Ella's Halo

Halo Happenings (January Edition)

2012-01-19T13:43:00.002-06:00

Like I said in our last post, 2012 is definitely starting off with a bang! We are so excited about the fun things we have been working. Here is a quick overview of what we have been busy doing.

First up, is an exciting article that was posted in Parents Magazine in their February issue about Ella's Halo. It was on page 8, so if you haven't seen it yet, head out to the newsstands and get your copy! I will post the article here on our blog in February. They wrote a sweet little piece about Ella and Ella's Halo. Not only did they put something in their magazine but they also made a $500 donation to us. What a fun way to help get Ella's Halo's name out there and also to share what our cause is all about to so many others.

We had an awesome turn out of book donations during this holiday season. I am actually still going through all of them, counting them, boxing them and putting Ella's Halo stickers on all of them. We are hoping to make this large donation later this month. So stay tuned to find out how many books were collected in November and December! Thank you to the sweet little girls of the Lino Lakes Girl Scouts for their book donations!

This week we meet up with the 5th Graders at Plymouth Creek Elementary School. They made blankets and donated them all to Ella's Halo. We received so many blankets to help donate to families in the NICU. It was a great learning experience for the students about volunteering and giving back. We are also going to the work with the PTA at Plymouth Creek later this month. The parents at the school are going to do a service project and make blankets for Ella's Halo too. Thank you so much Plymouth Creek! We appreciate your hard work and know many families will love the blankets too.

And finally, we are in full swing planning mode for our 3rd Annual Bowling for Babies! We are excited to start figuring out raffles, silent auction and fun activities for the day. May 12th, 2012 at Park Tavern has been set and we are are excited about a family fun day together raising money for Ella's Halo. If you are interested in donating or being a sponsor, email me at info@ellashalo.com. Mark your calendars and we will see you in a few months out at the lanes!

2011 Year in Review

2012-01-09T12:09:00.000-06:00

What a fun year 2011 was for Ella's Halo. We helped so many families this year, helped spread the word about Ella's Halo to others and our Welcome bags are now being given to every NICU family in three NICUs in Minneapolis and St. Paul. Here is a quick run down of our crazy year.

*January:    Completed our first donation of Welcome Bags to Children's St. Paul

*February: Ella's Halo hosts a fundraiser at Borders Book Stores

*March:      We celebrate Ella's 2nd Birthday with more Welcome Bag donations to Children's St.
Paul, DVD players and cameras to Children's Minneapolis, and blankets and books to Amplatz Children's Hospital

*April:        Ella's Halo provides its first Feature Family Series which are real stories from NICU families

*May:        Ella's Halo hosts 2nd Annual Bowling for Babies and raises over $12,000

*June:        Ella's Halo sponsors the water stop at Children's Hospital Baby Steps

*July:         Ella's Halo starts donating Welcome Bags for Children's Minneapolis and becomes an Alliance on Caringbridge

*August:     Kids' Company donated blankets to Ella's Halo and we had a feature article in the The Prior Lake Newspaper and we also were part of the Macy's Shop for a Cause.

*September: Ella's Halo served dinner at the Ronald McDonald House in Children's Hospital and also was in a contest for Parent's Magazine for best blogger

*October:     Ella's Halo had a table at the Birth and Baby Expo and meet many families who had received our Welcome Bags. Also hosted our 2nd Annual Strides For NICUs and raised over $3,000 to help families.

*November: Ella's Halo is part of the Pepsi Refresh vote and also wins $1,100 from KARE 11.

*December: Ella's Halo starts to donate Welcome Bags to 3rd hospital at Amplatz and also starts to donate Sibling Bags to Children's.

As you can see it was a busy year, and the way it is looking 2012 is starting off just as crazy!

January Feature Family

2012-01-04T10:32:00.012-06:00

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story, please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.

**Our post this month is a little late due to the busy holiday season.

I met this former NICU mother on the Parent Advisory Board for Amplatz Children's Hospital. We both care very deeply about helping children, giving back, and helping the hospital, especially the NICU. Bo and her husband had 3 little babies in the NICU. Here is their story.

Brooklyn, Bailey and Jordan Moore
Written by Bo Moore

Former NICU Mommy

In October 2008, my husband and I were thrilled to learn that I was pregnant with triplets. While that was not something we expected to hear; we were just excited that after years of miscarriages and infertility, we were finally adding to our family and our son was going to be a Big Brother!

As soon as we knew I was carrying triplets, I was referred to a Perintologist at UMMC Riverside. For the next few weeks, my husband & I had numerous appointments with a team of specialist there who discussed the risks that come with higher order multiples. I must admit that the information we learned was very worrisome; however, we felt as though our family, love, faith and marriage could handle whatever this unknown path may bring.

With the exception of horrible morning sickness, things were going fairly well in the beginning of the pregnancy. I had lengthy doctor appointments and level II ultrasounds every 2-3 weeks, which continued to show the babies were healthy and things were progressing as “normal”. When I was 16 weeks along, I was put on bed rest to keep the four of us as healthy and stress-free as possible. At 26 weeks, I was diagnosed with gestational diabetes and became insulin dependent, which is very common with multiples.

At my 28 week ultrasound/appointment, my husband, mom, sister and I were all excited to see the babies in action during my first level III ultrasound. About half way through the ultrasound, the technician excused herself. She came back in with a few doctors and they all starred at the large screen monitor as she was checking “Baby C”. After a few head nodding gestures amongst the doctors, we were told that “Baby C” appears to have an overriding aorta. This heart defect is usually one of four defects found with a heart defect called Tetralogy of Fallot.

My stomach dropped, heart grew heavy and eyes filled with tears. As a mother, I will never forget the heart ache and loneliness I felt. Even though my husband, mother& sister were with, I felt completely alone and was beyond devastated.

A week later, we had in-uteri heart echoes done on all of the babies and it confirmed that “Baby C” had Tetralogy of Fallot (TOF). A few days later, we met with the heart surgeon who explained what TOF was, how it’s surgically repaired, and what the care plan was for our baby.

At this point, I was seeing the Perintologist 2-3 times a week and having level III ultrasounds completed at each visit. When I was 32 weeks, my blood pressure was severely high and I was admitted to antepardum. The initial goal was for me to make it to 36 weeks, but at 33 weeks and 6 days, I started having health issues and they had to do an emergency c-section.

April 9, 2009, our triple blessing arrived! Weighing in at 4lbs 10oz, 4 lbs 8oz, and 4 lbs – our two girls and one boy made their grand entrance into this world. A team of over 20 doctors & nurses helped deliver them and I am happy to say we had no complications. Everyone was doing well and receiving the specialized care they needed.

Thankfully, the TOF baby who we named Bailey was doing fabulous and amazing all the doctors. Each baby had a nurse assigned to them as they were monitored closely. After 10 days in the NICU, the two “healthy” babies were able to go home. I remember how hard I cried having to leave Bailey alone in the NICU, but I quickly realized she wasn’t alone. The NICU nursing staff was filled with second mom’s to her. They loved and cared for her and her siblings as if they were their own.

Within a few weeks, the TOF started to show itself. Bailey started having “blue spells” and her health was deteriorating. It was determined that she needed to be in the PICU where the cardiology team was able to keep a close eye on her.

After almost 3 weeks of being in the PICU, it was determined the initial plan of waiting 3-6 months for her open-heart surgery was no longer an option – she was too critical. At just 6 weeks old and barely over 5 lbs, Bailey underwent her first open-heart surgery. She was the smallest patient this heart surgeon had ever attempted this type of repair on, so there was a lot of concern. Not because of the heart surgeon’s abilities, but because they were not sure if her tiny body could handle the extensive trauma it would be faced with. After 7 hours in surgery, we got the phone call in the patient lounge that they were able to repair 3 of the 4 defects and Bailey was stable.

As prepared as we thought we were to see her, we weren’t! I was in such shock that I couldn’t even cry at first. Seeing your tiny doll size baby with numerous tubes coming out of her stomach/neck/groin, with an incision that went from her neck to her belly button, while on the ventilator was unbearable. I was in such shock that I couldn’t even cry at first. Then, the PICU nurse hugged me and reassured me that she was going to be okay and that’s when the flood gates opened.

Later that night, Bailey had some complications and did have to have another emergency procedure done. Over the next few days, she continued to heal and 4 days after her heart surgery, she was taken off the ventilator. A week later, she was transferred to the floor, and a few weeks later she was finally discharged! After 3 months of calling the NICU/PICU “home”, Bailey was finally able to join the rest of our family at our home.

Bailey has continued to suffer and battle through a long list of health issues, some of which have been life threatening, but she continues to overcome the odds and is still with us. Unfortunately, her triplet sister (Brooklyn) was just hospitalized and diagnosed with juvenile diabetes in September of this year after being sick with a cold. Between Bailey & Brooklyn, they see 16 different specialists at UMACH. We continue to spend a lot of time at the hospital/clinics, and I am grateful for the amazing staff that goes out of its way to make sure we know that we’re more than just “patients” – we are part of the UMACH family.

Every night when I say my prayers, I thank God for all the blessings and miracles he has provided us. We know how lucky we are and do our best not to take anything for granted. We could not have survived the long emotional rollercoaster life has kept us on over the past few years, if it weren’t for the amazing staff in the NICU, PICU and CFL (Child Family Life). The heart-warming care and tenderness they gave our entire family while providing exceptional medical care for our children was second to none. All the hugs, words of wisdom, warm smiles, treats from the vending machine/break room, toys from the toy stash for big brother, and toothbrush runs, will be something I will forever be grateful for.

I’d like to thank Ella’s Halo for allowing us to share our story. I could not imagine the amount of heart ache you endured after Ella earned her angel wings. I imagine the pain and sorrow doesn’t go away, but I hope knowing all the good you’re doing in her honor brings some comfort to you.

God Bless!

The Moore Family

Happy Holidays

2011-12-28T08:56:00.000-06:00

Happy Holidays from your friends at Ella's Halo!

Catching Up

2011-12-14T09:26:00.000-06:00

Wow, I can't believe I haven't blogged in such a long time. I guess there is just too many things going on around here with the holidays. Here is a quick recap of what we have been up to here at Ella's Halo the past month!

Minnesota Paralegal Association Fall Gathering-

We were selected by the Minnesota Paralegal Association to be the nonprofit at their Fall Gathering. We held a book drive at their event on November 17th and collected over 150 books for our book drive. It was a fun evening collecting books, sharing our story about Ella's Halo, and meeting others within the community. Thank you MPA for letting us be part of your evening!

Taryn standing at our table with the books collected at MPA

Taryn speaking to the Minnesota Paralegal Association about Ella's Halo

Plymouth Creek 5th Grade Class-

Ms. Kostik's 5th Grade Class decided they wanted to help Ella's Halo this holiday season by making blankets and doing a book drive. I went to talk to their class on November 21st, told them about Ella and how Ella's Halo was started. They were an excited bunch of kids eager to help out babies. It was a fun morning and we look forward to the awesome donations they will be delivering to Ella's Halo in the coming weeks.

Taryn with Ms. Kostik's 5th Grade class and the kids showing their Ella's Halo bracelets

Ella's Halo Helping Hour-

We hosted our first ever Ella's Halo Helping Hour on December 1st. We invited our volunteers to come to help us put together 500 welcome bags that would be delivered to NICUs this holiday season. It was a fun evening with over 25 volunteers who helped put 500 bags together in 20 minutes! We had appetizers and wine to help our helpers get in the holiday spirit. We are looking forward to putting together another volunteer event in the future to help us continue to make bags.

Volunteers at Helping Hour making bags

500 bags our volunteers put together

Donating Bags to Amplatz-

Our bags are now being donated to the University of Minnesota Amplatz Children's Hospital in Minneapolis. This is now the third hospital in the Twin Cities that are giving our bags to families in the NICU. We are so excited to be able to donate these bags to families in the same NICU we were in with Ella. On December 9th we donated 50 bags to families currently on the unit and another 50 bags for future families. It was a great way to start the holidays by being able to donate bags that will help families in the NICU.

Taryn and Ryan donating bags to Amplatz

Staff at Amplatz that helped with dropping bags off to families in the NICU

So as you can see it has been a very busy month for us here at Ella's Halo. In addition to all of these things we have been doing, we are still holding our book drive. While you are out shopping this holiday season, remember to grab a book to donate to Ella's Halo.

Happy Holidays from Ella's Halo!

December Feature Family

2011-12-01T11:05:00.000-06:00

Our Feature Family this month are friends we have met through Faith's Lodge. They even spent time in the same NICU that we did with Ella. I work on the Family Outreach Committee for Faith's Lodge with Kari and have enjoyed the friendship that we have formed over the last few years. It is fitting to have Faith's Lodge friends tell their NICU story during December since it was two years ago this December that we went to Faith's Lodge and started our own journey of hope and healing.

Brandon Patrick Elias
Written by Kari Elias
Former NICU Mommy

July 19, 2006 our son, Brandon Patrick Elias, was born. At the time, we did not know it, but we were about to embark on a 25 day stay in the NICU. The NICU was a bittersweet place for us. The blessing was the support of our nurses and doctors. The hard part was wondering if we would ever get to experience a night at home with our son.

After Brandon was born, he was rushed to the NICU for special support. At the time, we did not know our son was very ill. We spent the first five days in a level two NICU trying to find out why our son was having trouble breathing, why he could not eat food like a healthy baby and why he had very low muscle tone. Over those five days the doctors ran a series of tests and we then made the decision to have our son moved to a NICU at the Fairview University Hospital so we had faster access to more doctors. That move was one of the best decisions we could have made. Although our experience at Fairview Southdale was top notch, things moved at a much quicker pace when we got to Fairview University Hospital.

After our move to Fairview University, we met a doctor that specialized in Neurology. He ran a test on our son that examined the “very long chain fatty acids,” which we were not familiar with. However, we got the results within two days. I remember the morning we got our son’s diagnosis. We had just gotten him to eat almost a full bottle. As many NICU parents learn, the criteria for taking your child home is getting him/her to breathe and feed on his/her own. We were so excited because we felt we might be on the home stretch. Later that morning, a doctor came to visit us. As we sat holding our son, he explained that Brandon had a rare genetic disorder called Zellweger Syndrome. From the look on the doctor’s face, I knew it was not good. I asked the doctor if it was terminal. His response was yes. I asked him how much time we had. He told us they really did not know. The life expectancy of a child with Zellweger Syndrome averaged six months to two years. I did not know what to think. He left and arranged for a geneticist to come and give us more details. In a weird way, it was at that moment I felt a little relief knowing there was a diagnosis, but in a split second it all changed to fear

After hearing our son’s diagnosis those in the NICU rallied around my family. They gave us time to cry, allowed extra visitors and worked with us to ensure our son could get home. Once we knew what lied ahead, we focused on bringing our son home to live.

Our son came home after 25 days in the NICU. We gave him as much life as we could by showing our little guy as much of the world as we could. My son, Brandon, went home with the angels on October 2, 2006. He lived two months and 14 days. I thank God every day He gave us the blessing of bringing our child home. I also thank God for the many people that came into our life because of the NICU: Amy Vivant, Cathy Hennessy, Dr. Keri Roberts, Dr. Lisa Schemmenti, Dr. Christina Morris and the interns at the hospital that gave us so much love and support. I sometimes wish I would have never met them, but I am so thankful that during our journey they supported us and helped us through one of the toughest times of our life.

Top Ten Tuesday

2011-11-15T22:11:00.000-06:00

In honor of November being Prematurity Awareness Month and also World Prematurity Day on November 17th I thought I would do a top 10 about things you may not know about preemies.

1. Did you know that over 13 million premature babies are born every year world wide? That is a lot of preemies who have to spend time in the Neonatal Intensive Care Units. (info from here)

2. Did you know that one of the greatest minds in history, Albert Einstein was born preterm? How about Stevie Wonder or Mark Twain!? Yup, they were preemies too.

3. Did you know that average cost of having your preemie in the NICU is roughly $15,100? And that is before medicine, doctors, specialist and machines that your preemie might need which could dramatically increase these costs. Prematurity accounts for 47% of all costs related to infants. (info from here) That is over half!

4. Did you know preterm infants that have skin to skin connection with their parents gain weight faster, cry less, have a more stabilized body temperature, sleep better, breathe better, are often more alert, and have more stable heart rates? Preemies need to be touched and connect with their parents. Usually this is done through Kangaroo care and is so important to preemies and parents.

5. Did you know that a simple bad cold in a full term baby could be life threatening for a preemie? Preemies have lower immunity and need to be protected the first two years of their lives from the common cold and germs. That is why hand washing, keeping preemies home and out of large public places are so important.

6. Did you know that preemies are not just tiny little babies, they also are little fighters that have to overcome many health concerns? The range of health concerns is quite large and can range from short term problems such as breathing, heart problems and eye functions to larger long term problems such as cerebral palsy, hearing and visual impairments and developmental concerns. Each preemie has his or her own health concerns and what might happen to one 24 weeker isn't always the same for another 24 weeker.

7. Did you know a preemie could be less than one pound or as big as 9 pounds? Premature babies fall in the range of 24 weeks to 36 weeks. Their sizes, weights, needs and health conerns can all be very different.

8. Did you know that most babies who spend time in the NICU do eventually come home? Some babies spend a few hours, some a few days, and some spend many months in the NICU. Thankfully, with modern technology, much research and experienced doctors, many premature babies get to leave the NICU with their parents.

9. Did you know that even though a preemie might have tubes, wires and vents all connected to them, they do know that their parents are there? Preemies can sense, smell and hear their parents. It is important for them to have their parents read books to them, to hear their parents talk to them, and to have their parents close.

10. Did you know that preemies are celebrated in November and especially on November 17th? What a wonderful way to help others understand and learn more about preemies. Wear your purple this Thursday for Preemies!

Just Vote

2011-11-14T10:02:00.000-06:00

We are so excited to be up for KARE 11 and their $11,000 Charity Vote. The local non-profit with the most votes will receive an $11,000 grant from the Gannett Foundation and KARE 11! Voting ends at 11:59 p.m. on Wednesday, November 16, 2011. So please check out KARE 11's facebook page and vote!

Also on Friday 11/11 we were the lucky winner of $1,100 also from KARE 11. Check out their website to see other nonprofits that won $1,100 too.

Don't forget we are still up for the Pepsi Refresh Project Grant too. Voting goes until 11/30 so keep voting. You can vote via facebook, text (Text 109357 to Pepsi 73774) and your email----or all three ways! Each vote helps! We need to be number 15 or lower so please share with your friends and help us win $10,000 to continue to help families and babies.

So many easy ways to help Ella's Halo and it only takes a few minutes to vote! Help us, help babies!

Halo Happenings (November Edition)

2011-11-08T15:20:00.000-06:00

Welcome back to Halo Happenings. November is definitely starting off to be a crazy month. We have lots going on (as always) around here.

As I am sure you have seen in emails or on facebook, but Ella's Halo is up for $10K Pepsi Refresh Grant. It would be so awesome to win this so we can continue to help families in the NICU. Here are a couple of easy ways to get your votes in now before November 30th. Remember you can vote everyday so go and VOTE.

3 Steps to Voting Online:

1. Follow this link: http://www.refresheverything.com/ellashalo
2. Login or sign up (to sign up it just takes a minute). You can even login with your Facebook account.
3. VOTE and make sure to come back everyday after and continue voting.
2 Steps to Text Vote:
1. Grab your phone and text Pepsi at the number 73774
2. Put 109357 into your message and text again the next day

We are also doing our babies and book drive. Join us now and during the holiday season by collecting new or gently used books for families in the NICUs. We are looking forward to the Minnesota Paralegal Association and their Fall Gathering on November 17th. We will have a table, will be collecting books and talking about Ella's Halo at this event and are super excited. So remember to grab some books when you are out shopping this holiday season.

We are also looking for supporters to email KARE 11 at share@kare11.com to nominate Ella's Halo. KARE 11 is celebrating 11/11/11 by recognizing local non-profits that give back to our community. Simply write a paragraph (no more than 111 words) telling them about your favorite local non-profit (Ella's Halo of course) and the difference they make for the community. Please submit these by November 9th at 8:00 am (tomorrow morning). Twenty-two entries will be randomly selected and announced on 11-11-11. So please send an email for Ella's Halo!

We are excited to host a volunteer event for Ella's Halo. We are hosting a welcome bag making party which will all then be donated to area NICUs. It will be a good way to get our volunteers together, enjoy some appetizers and cocktails, and help give back to our community. Details about our first volunteer Helping Hour will be coming out later this month. So check back soon!

And finally, did you know the November is Prematurity Awareness Month. Premature birth is something that can happen to anyone! Did you know that premature birth is the leading cause of newborn deaths world wide and that prematurity has risen by 30% since 1981. It is a cause for concern and November is a month where we can bring awareness to these issues. The March of Dimes provides so much information and statistics on premature babies. And November 17 is World Prematurity Day when we all come together and focus on the issues of premature births.

Check out next week when I pay tribute to Prematurity Awareness Month in my Tuesday Top Ten blog post.

November is already off to a fun month. So much to look forward to, great ways and ideas of giving back this holiday season, and we can't forget Thanksgiving and all that we are thankful for.

Refreshing

2011-11-03T16:38:00.004-05:00

We are so excited to be up for the Pepsi Refresh Project $10K Grant. It would be so amazing to win this grant so that we can continue to support babies and families in the NICU. Just think $10,000 would help us support 3 NICUs in the Twin Cities for 2 years! We would be helping so many families by providing over 1,000 bags.

It is sooooooo simple and only takes just a few seconds in your day to vote. There are two ways to vote. Online or Text (or both)!

3 Steps to Voting Online:

1. Follow this link: http://www.refresheverything.com/ellashalo
2. Login or sign up (to sign up it just takes a minute). You can even login with your Facebook account.

3. VOTE and make sure to come back everyday after and continue voting.

2 Steps to Text Vote:

1. Grab your phone and text Pepsi at the number 73774

2. Put 109357 into your message and text again the next day

You can vote everyday! So go and VOTE!

Now that you voted, help us spread the word too. It only takes a minute to pass along.

Here are some helpful tips:

1. Send an email to your friends and tell them to vote at http://www.refresheverything.com/ellashalo

2. Link up to our event on Facebook and share with your online friends

If we get enough votes from our supporters to stay in the top 15 projects in our category we will get a $10,000 grant!!

What perfect time to be up for this Pepsi Refresh Grant. You have the entire month of November to vote and November just happens to be Prematurity Awareness Month. So go on and keep voting so we can keep helping little preemies!

November Feature Family

2011-11-01T10:19:00.000-05:00

Our November Feature Family are very special to us. They are friends that we didn't meet in the NICU but through our Support Group. If you have been following our blog, you know that the friendships we made in the NICU and in our Support Group are so very important to us. When we first met Molly and Zach, they did something very special, they held their very own blanket drive and donated them all to Ella's Halo. I know Molly doesn't know this, but their kind gesture is something I will always remember and that touched us. To know these two parents were wanting to help others during their first holiday without their little baby boy was just so special. Their NICU experience may have been short, but it left a huge impact on them as they continue to give back to the NICU.

Dylan Quinn

Written by Molly Quinn

Former NICU Mommy

Our son Dylan was born on August 10th, 2009 at 29 weeks 1 day gestation. We were going along in our pregnancy with no problems until we were told at our 20 week ultrasound that he was sick with what is called Fetal Hydrops, we were shocked. Hydrops causes a baby to develop at a poor rate due to fluid filling the body in two or more cavities. The fluid is a result of and underlying problem, we never found out what this was. My husband Zach and I were heartbroken. Nobody really thinks something like this will ever happen to them.

Upon finding out that Dylan was sick they told us our chances of him surviving this was somewhere around less than 5%. The following weeks were filled with countless doctors visits and a lot of waiting. We were waiting to feel because we did not know what the outcome would be. Our doctors thought that our little boys heart would stop by 22 weeks because there was so much fluid throughout his entire body and at times I was essentially waiting for that to happen. At 22 weeks his heart was beating and he was still strong. Over the weeks he started to move more and grow a lot. We of course were so in love with this baby and thought "we are going to make it!“. At about 27 weeks they started to become very concerned with my health and feared I was developing mirror syndrome which would cause me to mirror Dylan’s’ fluid, and also be at risk for preeclampsia. At 28 weeks I had developed polyhydramnios, too much amniotic fluid, and they decided to do steroid shots to try and mature his lungs. They also offered to do a thoracentesis. This is a procedure where they use a needle draw to remove fluid from the baby’s lungs. We decided it was our best option to help save Dylan who had plural effusions (fluid in both chest cavities), ascites (fluid in the tummy), and skin edema (fluid under the skin). He was a very severe case. The main concern of Dylan’s survival was lung development due to the fluid preventing this from happening, so we scheduled the procedure to be done.

As we were getting closer to a possible delivery we went to meet with our neonatologist at the University of Minnesota Riverside NICU on the morning of August 10th. We really wanted to plan and be ready for Dylan’s visit to the NICU after he was born. Everything went great, we were even shown a hydrop baby in the NICU that was doing really well. Our doctor explained all of the machines and what they did, he also went over detailed information on what exactly would happen as soon as our baby was born. We left feeling happy and full of hope because of the staff making us feel so welcome and we knew they would love and care for our son when he arrived.

Immediately following our meeting we were scheduled for the thoracentesis. The doctors were able to drain almost all of the fluid off of Dylan's left side of his lung and a liter and 1/2 of amniotic fluid from me. It was quite painful and I had been contracting through the entire procedure. We were done and happy, they actually said let's do the other lung but take a break first. We were put in a recovery room to monitor his heart and his movements and I felt so great, I kept thinking that we were on the road to taking our boy home. Then my water broke, my heart broke, I knew this was not good.

They delivered Dylan by Cesarean at 4:58 pm. I was able to see his perfect face and kiss him before I handed him over to the NICU team. Dylan was in the NICU for almost an hour as they worked on him. The doctor called my husband Zach down to show him x-rays of Dylan's chest and show him all of his vitals on the machines, he was very sick. Dylan was trying so hard, yet his oxygen levels had now affected his health even more, and Zach and I knew it was time to let him go. I will never forget the sea of sad faces that received me as I was wheeled in. They handed Dylan to me and he was at peace, he took his last few breaths in my arms. He was there with Zach and I as we told him we loved him and kissed him.

Not all of the NICU stories end how the parents and staff would like them to. Although we only spent a short time in the NICU with our son, it is the only time we ever had with him. The doctors and nurses made sure it was something special, and what happened in the short time we had with Dylan was somewhat magical. We were able to baptize our perfect little angel and spend almost 3 hours with him after he went to heaven. We were able to have the time to stare at him and kiss him like any parent would. Our amazing nurse Michelle took many pictures and also allowed Zach to give him a bath and change his diaper. Michelle brought us many different outfits, allowed us to choose our favorite one, and dress him. These are the moments that every first time parent dreams of, and she knew exactly what we needed. She will never be forgotten, she holds such a special place in our hearts.

We just celebrated Dylan’s 2nd angel birthday. For the past two years we have gone to the NICU on this day. We love to bring the staff flowers and say hello. We have also chosen to donate books, clothes, and other items that will allow the current NICU families and their babies to feel more at home. We continually want to let the staff know how much they impacted our lives. As parents that had only hours with our son, we feel lucky to say it was such a positive and memorable experience. This is because of what these nurses and doctors do each and every single day. The true sincerity we felt from each person that day will never be forgotten, and we thank them for that.

Dylan touched so many people that day and throughout his journey, as his parents, we hope he is never forgotten. Our wish is that his story can inspire even a small amount of greatness in anyone reading it. He was a fighter and has changed our lives for the better. My husband and I look forward to telling his little brother Brody his story someday.

Thank you to the staff at the University of Minnesota Amplatz Children’s Hospital. A special thank you to Ella's Halo for all that you do, we are lucky to know you Taryn and Ryan. And lastly, thank you for allowing us to share our son Dylan’s story.

~ Molly Quinn (Dylan and Brody’s mommy)

Babies and Books

2011-10-28T12:20:00.000-05:00

Join us this holiday season as Ella's Halo hosts our first annual book drive. We are very excited about setting up a book drive to help NICUs here in the Twin Cities.

WHY BOOKS:

Here are a few benefits you may not have known about why it is so important to read to babies, especially babies in the NICU!

Reading aloud to your baby is a wonderful shared activity you can continue for years to come — and it's an important form of stimulation and communication. It usually is something that is continued once the baby gets to come home.
When reading, babies hear different emotions and expressive sounds which helps to foster social and emotional development even at a young age.
And most important it helps to create a bond between baby and parent. Babies love their parents closeness and voice while parents get to bond with their bundle of joy. The Journal of Developmental and Behavioral Pediatrics did a study on reading to babies in the NICU. They found that 70% of parents that read to their babies in the NICU felt a closer bond with their preemie.

***And for many other reasons check out this site to learn about the benefits of reading to babies.

Not only are we are we accepting new or gently used children's books but are also accepting adult books as well. We spent many hours sitting next to Ella's bedside. Often times when I wasn't taking to the nurses, listening to lullabies with Ella, or telling her stories and reading her books, I was sitting in the chair and reading about NICU life and preemies myself. Sometimes even reading romance novels to help take my mind off being in the hospital. So check your bookshelves to see if you have books that you have read and would like to donate to parents of the NICU too.

HOW TO HELP:

Book drives can be something you start on your own or by simply going through your bookshelf. Here are some helpful tips for helping you get started in collected new or gently used books.

During your holiday party this year, instead of doing an ornament exchanges or having guests bring an appetizer to share, have them bring a book they could donate. What a fun way for people to get together around the holiday season, spending time with family and friends, and donating a book that could be read to a baby who has to spend Christmas in the NICU this year.
Set up a box at work and have your co-workers join in on the fun. Getting others involved and organizing your own mini book drive is half the fun of giving back. Check with your employer and start collecting books this holiday season.
Check with organizations your kids are involved in. Mother's Day Out programs, after school programs and Boy and Girl Scouts are always looking for service projects to get kids involved. See what Kid's Company did this summer at their book and blanket drive for Ella's Halo.

WHERE TO DONATE:

It is easy to donate! Just contact us by email at info@ellashalo.com and we will arrange for you to ship or for pick up of the books you donated. Also we would love to hear your stories about how you are organizing your book drive to support Ella's Halo!

WHEN TO START:

Right now! We are hoping to donate all of the books before December 25th to area NICUs. So start collecting today!

Check out Minnesota Paralegal Association and see how they are helping Ella's Halo with their very own book drive.

Babies and Books- Ella's Halo book drive! Help us, help babies this holiday season.

Twin Cities Birth and Baby Expo

2011-10-19T10:49:00.000-05:00

Ella's Halo had the opportunity to have a booth at the Twin Cities Birth and Baby Expo. It was such a fun day. There was so much excitement and energy at the event. It was hard not to catch the baby fever!

The Expo was started in 2009 with a mission to connect local families with empowering, multicultural resources and education that promotes healthy birth and parenting and to celebrate the transformative experience of becoming parents. Check out their website to learn more here.

There were local businesses and organization that all offer products and services for families. There were over 75 exhibitors at the event and it was so fun to meet other organizations that are helping within our community.

The highlight for me, was having the chance to meet families who had spent time in the NICU...even meeting some families who had received one of our Ella's Halo Welcome Bags! I got to meet this sweet family below and their twins. They received one or our welcome bags during their NICU stay. To see their faces and know that we are helping families makes all of the hard work so worth it.

I met families who had a preemie in the NICU years ago and who gave me a hug to thank me for having our services now valuable to families. Having them tell us their story and explain about items they had wished they had while in the NICU helped to confirm that we providing things most needed to NICU families.

The Twin Cities Birth and Baby Expo was just what my soul needed to keep doing what we are doing. It was what I needed so that I could find hope and happiness in future pregnancies again. It was just seeing families spending the day learning about birth, parenting, families, and children that makes doing Ella's Halo all worth it.

We can't wait for next year!

October 15th

2011-10-15T07:00:00.001-05:00

Don't forget to light a candle for one hour at 7PM (all time zones) for the Oct. 15th International Wave of Light. Remembering all little ones who left us too soon.

Top Ten Tuesday

2011-10-11T17:18:00.000-05:00

Since October is Pregnancy and Infant Loss Awareness month, I thought I would do a top ten about things people should know about parents who have experienced infant loss in the NICU. This actually happens to more families than you might think. Check out the top ten things I think you should now about bereaved NICU parents.

1. The March of Dimes states that premature birth is the leading cause of newborn deaths. 45% of babies born under 750 grams (1 pound 6 ounces) don't survive. Although there are many advancements with preemies and premature births, there are still many families who not only leave the hospital empty handed but also leave the NICU empty handed.

2. Not only have parents experienced rollercoaster journey while in the NICU with their baby, but after the death of their child they are now going to be experiencing a rollercoaster of emotions due to grief. Many of the emotions they felt while in the hospital they will feel now at home. Guilt, grief, helplessness, shock and sadness are many of the emotions parents feel while their baby is in the NICU and also feel after the death of their child.

3. The adjustment after being in the NICU with your child back into your regular life is hard enough. It is even harder if you come back to your regular life without the baby you were caring for in the NICU. It will take time for things to get back to normal for these parents however it is not the old normal but a new normal. Be supportive as they are trying to adjust to the new chapter of their lives.

4. The connections and friendships made while in the NICU are so important. It is only those parents who have experienced the NICU that really know what it is like to have a baby in the hospital. The same is true for parents who have experienced a loss. Both types of these friendships are so important to bereaved NICU parents. The doctors and nurses become your friends too and some days the only adult interaction you have. They are the only ones who knew your baby and their friendships mean so much even after you leave the NICU, especially for parents who leave without their baby.

5. Memories are sometimes the only things parents have. All of our memories with our daughter have to do with the NICU. It was her home. Let me talk about her even if it sounds strange to you by me starting starting off with ...."while she was on the vent" or "the day she peed 50 grams"...these memories are all we have left. They may not seem like what most parents talk about, but believe me, that is what NICU parents DO talk about.

6. We are still parents. Even though my baby didn't come home with me, I am still her mom. I was her mom in the NICU and I am still her mom now. Bereaved NICU parents are still parents.

7. Many things are lost with the NICU experience. Parents not only lose a child, but lose the dreams they had for their baby to grow up, they lose the joy and happiness for future pregnancies and sometimes they just simply lose hope. We lost many things during our stay in the NICU and after our child's death, but we didn't lose our love for each other, love for our baby, and even love for the nurses and doctors in the NICU.

8. Parents miss their baby and they miss the NICU. After Ella died, I missed the routine of going into the NICU, seeing the nurses, hearing rounds by the doctors, and humming of the unit. When parents first entered the NICU with their baby it is hard for them to imagine getting used to sitting in a hospital next to our newborn. But after 83 days it became part of being Ella's parents. I missed the normalcy I felt while I was in the NICU advocating for my daughter. After she died, I didn't know what my role was any more and I so badly wanted to walk down those hospital halls and back into the NICU. I felt that was the only place we belonged as preemie parents.

9. It is very hard to forget what life was like in the NICU. One step forward, two steps back, Is and Os, Bilirubin, blood gases, vents, jets, Hemoglobin, PDA, brain bleeds, PICC lines, ROP, desats, Surfactant....I still remember what all of this means. It feels like yesterday that we were there with our baby. Obviously the NICU has become part of us and we will never forget our time in the NICU.

10. It is just plain hard. It is hard to have a baby in the NICU and it is hard to lose a baby.

So join us on October 15th and remember all little ones who have gone too soon. Light a candle and help us remember.

Halo Happenings (October Edition)

2011-10-06T13:43:00.003-05:00

Welcome to another edition of Halo Happenings. As I said before, so much is happening and so here is a quick run down of what we have been up to at Ella's Halo.

We just got finished with our second annual Strides for NICUs event. It was a chilly beautiful fall morning on October 1st in Perham, Minnesota. We had a great turn out of racers and family walkers. Check out our facebook page to see all of the pictures from Strides. We raised over $2500 on Saturday to continue to help families in the NICU and to help continue to raise awareness about our organization and our mission. It was a fun morning seeing friends, families and others from the community out to support our cause.

Again, another thank you to all of our awesome Strides for NICUs event sponsors. It is because of you that our event was so successful.

Allegro Marketing,

Bremer Bank,

Carr's Tree Service,

Judd and Soleil Palubicki,

KLN Family Brands,

Nadine's,

Natural Nutrients,

Red Roof Animal Hospital,

RedKing Foods LLC,

United Community Bank,

Wedding Designs and Rentals

Did you know that October is Pregnancy and Infant Loss Awareness month? The Pregnancy and Infant Loss Awareness movement began in the United States on October 25, 1988 when former American President Ronald Reagan designated the month of October 1988 as "Pregnancy and Infant Loss Awareness Month". On October 15, at 7:00 pm in all time zones, we will light candles in memory all of the precious babies who have been lost during pregnancy or in infancy.

October is a month to remember all of our sweet little ones who left us too soon. Check out these websites to learn more about this special month and to learn about ways they are helping to spread awareness about prenancy and infant loss.

Also this month we are super excited about being part of the Twin Cities Birth and Baby Expo! Ella's Halo will have a booth at this event to help spread awareness about our organization and helping families in the NICU. We are so excited to be part of this wonderful expo for mothers, babies and families. Come check us out on October 15th at Midtown Global Market in Minneapolis. It should be a fun day!

Also starting this month through November 30th, Ella's Halo will be kicking off our Babies and Books book drive. Over the next couple of months we will be collecting new and/or gently used books for the family lounge in the University of Minnesota Ampatz Children's Hospital NICU. We are so excited to be partnering with the Minnesota Paralegals Association. They are kicking off our babies and books this month as one of their pro bono and community service projects. We will be posting more information on our blog and facebook regarding our upcoming book drive so check back soon as we get ready to launch this fun project.

So as you can see October is off to a busy start! We are excited about being part of the expo next weekend and also getting ready for our book drive during the holiday season. Before we know it, October will be gone and it will be November.

October Feature Family

2011-10-02T10:55:00.010-05:00

**Our post this month is a day late due to our Strides for NICUs event yesterday.

Our Feature Family may not even know they touched our lives when they first did, but we actually met Jedd when we were in the NICU with Ella. He was hosting the pizza party in the family lounge for the Parent to Parent Volunteer Group. I remember him telling us about how his three babies spent time in the NICU and how his daughters never got to make it home. I think I remember him so well because I knew at this time that it was a very real possibility Ella might not make it home either. But seeing him there giving back to help other families who were in the NICU inspired me.

After we started Ella's Halo I meet Amy at a Parent to Parent meeting when I went to get ideas and talk to the group about how Ella's Halo can help families in the NICU. Little did I know that a year later I would be joining this awesome group of families and be part of Parent to Parent also. Over this past summer Amy and Jedd hosted a birthday party to celebrate Charlie's 5th birthday and to honor Grace and Julia. Instead of asking for gifts, they decided to have guests support Ella's Halo and CaringBridge. She sent me a letter after the party along with their donation, I kept the letter and still have it today. I pull it out and read it from time to time, especially the line she wrote that says, "I'm sure she is very proud of her mommy and daddy." I know Ben, Charlie, Grace and Julia are all very proud of their mommy and daddy too. They both continue to do great things for the Amplatz Children's Hospital NICU. We are honored they shared their story with us.

Charlie, Grace, and Julia Hanson

Written by Amy Hanson

Former NICU Mommy

It’s strange to think back to that day in December, 2005 when we found out that we were pregnant with triplets. To think about the chain of events that lead us to becoming the very different people we are today seems almost unreal. Being NICU parents changed everything.

We were shocked to find that there were not one but THREE little people developing inside of me. There were mixed emotions, but we were mostly excited. Our son, Benjamin, had recently had his second birthday. I worried about the attention that would be taken from him, but I vowed to not let that happen.

The pregnancy was physically exhausting, and the planning that had to be set in place for three babies coming into our lives was mentally taxing. We read books about multiples, made lists, bought a van and a large freezer for the basement. We thought we were as ready as we could be.

What we were NOT ready for was the idea that these babies would struggle for their lives. We were told that the identical babies, (at that time named Baby B and Baby C) had Twin-to-Twin Transfusion Syndrome, meaning their fight would start in the womb. We were NOT ready for their arrival, 13 weeks early, when Charlie came into the world at 2 pounds, four ounces, Grace weighing a mere 15 ounces and Julia was in the middle at 1 pound, two ounces. This is not the way it was supposed to happen, but even if someone had given us a play-by-play of this scenario ahead of time, we could not have been ready. No one can prepare themselves for something like this. And so, this story is not to prepare anyone, or even to tell you what it will be like, but to let you know that you are not alone.

Their lives began with tubes and needles, pain and discomfort, scans and x-rays and test after test. It was chaotic and confusing, but that’s the NICU. I heard the voices of the doctors, nurses and fellows explaining that Grace needed to pee, Charlie had a grade 4 brain bleed, and Julia’s stomach was distended and not getting better. When all this shocking information is coming to you from all sides your body starts to go into protective mode. You may go into shock. You go through the motions, sign the paper of consent for surgery for your one pound child and move through the days. People wonder how you make it through, and you just think, ‘well, I breathed in and out, because it’s what I automatically do, and that is what got me through’. Looking back, I know it was more than that, but at the time you just allow yourself to be pulled from bedside to bedside.

And then there came a Sunday that snapped me out of my shock for a little while. My husband and I had just dropped Benjamin off at my parent’s house so we could spend the evening with the babies. I always looked forward to getting to the nursery, especially on the weekends, when the time spent there was less. For reasons unknown to me then, as we got on the freeway that day I began to cry. I didn’t want to go and I didn’t know why. I was shaky and anxious before we even got there and I didn’t want to walk into that busy nursery. Once we got there it only took a few moments to realize why I was feeling that way - Grace was so very sick. She had more than an extra pound of fluid on her 15 ounce body and her skin was stretched to its limit. She was on full assist and she had not peed. It was no longer about what the doctors were doing for her, but rather what they were doing to her. We were told we had to make a decision. No parent should ever have to make this kind of decision for their child. We felt like her life was in our hands. But if you could’ve seen her, well, it was obvious what had to be done. But still, we had to say the words. We decided it would happen the next morning so we could have our family and our priest there. Grace would be baptized and be given her last rites on the same day.

Grace in the NICU

That next morning was surreal. And as crazy as it sounds, it was one of the best days of my life. It was beautiful. It was peaceful. It was LIFE. Extreme emotions surrounded by love and support. We were being HELD, and not by each other. God’s presence was so big in that tiny room… How else can you make it through something like that?

The talk the fellow on duty had with us before it all started was insane. She said that when they take out the tube, there may be some gurgling sounds, some gasping for air. She said Grace might turn blue. She wanted us to be “prepared” for that. Ha! She told us that Grace was on a lot of morphine to make sure she wasn’t uncomfortable. This made me really sad. I wanted her to know we were there. I wanted her to know what it felt like to be touched by her own mommy and daddy (something we hadn’t been able to do because of her underdeveloped skin). I wanted her to hear our voices. I was afraid that the drugs would not allow that but now I think that maybe she had been sitting comfortably in God’s lap, watching it all happen. And maybe her arms were around us as well.

We sat off to the side of the nursery, away from Julia and Charlie, in this little room. My parents were there, as were my brother, my sister-in-law, our priest and the NICU Chaplin who had become a dear friend. My husband Jedd and I each held Grace for the first time as did each member of our family. We kissed her and stroked her cheeks. I questioned what God would think of us, giving Him back this beautiful little girl he had just given us. God answered my question through the people there that day. He said, “This decision has already been made for you - you are now just letting her go to the place she is supposed to be.” He said, “Maybe you are not human beings having a spiritual experience, but rather spiritual beings have a human experience.” He said, “You are a good mother. You are a good mother. You are a good mother.”

Julia in the NICU

After she was gone, life went on. Can you believe that? Grace was still warm in my arms, and as Jedd looked out the window he saw people heading out to lunch, going for a walk, laughing… people were just going on with their lives while our hearts were breaking and our daughter was making her transition to an angel. Unbelievable!

We were moved to another nursery the next day, as the staff thought it might be upsetting to see Grace’s empty spot in the nursery. Her funeral was on the same day that I got to hold Julia for the first time. We went to the funeral with good news about Charlie and Julia, telling everyone they were doing so well. We hadn’t a clue. You see, we had told the doctors early on that we didn’t want to hear the statistics and the worse case scenarios. We wanted to hear about what was happening with our children at that time, and not what they think could or might happen. This way it was easier for us to hold on to HOPE. Hope is what also carried us through this journey. If you don’t have hope, you have nothing. And so we took great delight in the little things - open eyes, a wet diaper, a new hat, a change in ventilator settings - these may seem like little things to a person who has not been in the NICU, but to us they were reason to rejoice and smile and let down our shoulders a little. We knew there were peaks and valleys in this place, but when you know how deep those valleys can be, you stay up at the top for as long as you can.

That first day I got to hold Julia was the day that they were showing the last of the neonatal team the consecutive scans of Julia’s brain. The scans were getting worse and worse, and the neonatal doctors had agreed unanimously that the scans foretold the story of a life confined to a wheelchair, without words, without noise, and quite possibly full of darkness. The news was devastating, of course. The fellow who had to tell us cried right along with us. His eyes filled with tears and his voice shook as he tried to make predictions from this little black box, this thing that no doctor truly and completely understands…the brain. Before this meeting I had been feeling good about both Charlie and Julia. Charlie was ready to switch from a ventilator to a CPAP and Julia seemed to be bringing herself back up again whenever her oxygen saturation levels would drop. When all of this news was thrown at us, I felt myself going down a drain. I felt the spiraling and the dizziness and suffocation coming at me, and I didn’t have a clue how to stop it all. I leaned against Chaplin Chuck and thought maybe some of his “Chaplin-ness” would rub off and I would feel God lifting me from the haze. But that didn’t happen. I held on to Jedd’s hand, like I had so many times before, and squeezed.

As we let this all settle in and tried to think about what life would be like with a child who would have lots of special needs, life went on again. I couldn’t get over that part. People who have not been in the NICU have no idea what it is like. They can imagine, and do their best to make you feel better. They say things to you with good intentions, but sometimes leave you speechless with their inconsiderate words. You have to remember that they don’t know. They don’t know what it’s like and they say the typical things that people say during hardship or loss. They are doing their best without knowing what it is they would want to hear if the roles were reversed. Sometimes silence is golden. A hug can say so much more than any word could get across. How could they know this?

Having Benjamin in our lives was a Godsend! Many people think it would be hard to have a little one at home, but he actually was our break from reality! We kept him in daycare so he had that constant in his life, and our days were free for being at the NICU. Benjamin always made us laugh and smile and helped us put our minds on other things, like what his favorite song was, how many bananas he could eat at one time or how long he could ride his Big Wheel. He kept us sane.

Charlie was sort of put on the back burner during most of his stay. His brain bleed required surgery to place a shunt, and we were told the outcome could be anything from a completely “normal” child to severe cerebral palsy. We would have to wait and see. His weekly eye tests were normal and his PDA fixed itself with meds. He finally got on a nasal cannula (we got to see him without tape squeezing his cheeks together!) and then an open-air crib. Thank goodness he was moving along without too much fuss. He was a trooper and a fighter, just waiting for us until there was time. Our little bear!

Charlie in the NICU

In the meantime, Julia was slowly taking a turn for the worse. She was not absorbing her calories, even with the two sets of steroids that she was given. She was unable to wean down on her vent settings and she eventually required surgery for her perforated intestines. She also had a shunt placed, just like her brother, although she had a harder time with the surgery and got an infection and a collapsed lung. The doctors told us there are two things a baby needs to get off of a vent – a strong heart and lungs, and a brain that remembers what to do. She only had one of those things. It was just one thing after the other with her. She hadn’t had a break since conception.

And so, eventually we had to make another decision. I couldn’t believe it. To do it once was unimaginable, but TWICE?! I couldn’t wrap my head around it. When Julia would look at me with her big, dark eyes I couldn’t see the pain and the sickness and the doubt. I only saw her soul. My daughters beautiful soul was there in those eyes. We had made a connection. Because of this, it was harder to come to terms with having to make this decision. Who were we to decide what to do? Wasn’t this the doctor’s job? Wasn’t this God’s job?! We were swayed to let Julia make the decision. Not just by the doctor’s, but by our hearts, in so many (private) ways. She would decide.

It was a Monday morning and we held her for a while before they took out her tube. We took pictures which was awkward, but necessary. That was one of the regrets I have from the NICU… we didn’t take enough pictures and videos. With three sick babies, pictures and videos were not at the forefront of my mind, and I only wish someone would have thought to just be present and do it more often. But I have the memories, clear as day, in my heart.

That Monday was a pretty good day, once she was off the vent she actually held her own - in fact, she seemed to be doing even better! My mind and my heart were a huge bundle of emotions. I didn’t know if I should pray that God would just take her so she wouldn’t have to live a life like the one that was predicted for her, or if I should pray that she would be strong enough to stay with us so we could show our little girl what it’s like to be loved and held. Maybe all of the doctors were wrong. I was being selfish either way.

When Jedd and I walked in to the nursery on Tuesday evening, I knew. I knew we would be there until Julia was gone. Her breathing was labored and there was a sort of rattle. She had spit up her food, which she had never done before. I just knew. And so I held her. I touched her and whispered to her how much I loved her. Through my continuous tears, I told her it was okay to let go - that her sister would be waiting for her and she didn’t have to be afraid. And as I held her in my lap with Jedd by our side, she laid with her eyes closed. Her head was in my hands and she was quickly slipping away. Her heart rate was down in the twenties and I knew it was almost over and so I asked her to open her eyes. “Just one last time, baby. I need to see those eyes one more time”. And she did!! She opened her eyes with peace and comfort, and they seemed to say that she was going to be okay. And then she closed them and she was gone. It was 12:02 a.m. I knew it was happening, but when Julia was gone I just couldn’t believe it. I couldn’t believe that we had lost another daughter. I couldn’t believe that He would give us three beautiful babies and then take away two of them so quickly. Why would He do that? What was He trying to teach us? Were all of our prayers, that we so fiercely repeated over each isolette, not good enough for Him? What did we do so wrong? I was mad. The thing I held onto with all my strength had disappeared… my faith was gone. My faith was crushed and my spirit broken. I was done with Him.

Each time I went into the nursery I would put my hands over Charlie, trying to protect him from something horrible happening. It scared me to have a doctor walk into the nursery as I feared he would want to ‘talk’ to us about Charlie. Fortunately, there were no care conferences for Charlie. He pushed his way through, learning to drink a bottle and breath at the same time. He made if home three days before his due date.

Leaving the NICU was bitter-sweet. I didn’t want to leave the only place my girls ever knew. I didn’t want to leave the comfort of our new family, as after three months and such extreme emotions, the staff there had become our extended family. They new, first-hand, what we were going through. They saw what had happened and had walked by our side with tears in their eyes from our losses, or cheers of joy for our Charlie bear! Five years later we are still in contact with them and many of the NICU staff came to Charlie’s fifth birthday celebration. They will always have a part of our hearts.

Nothing I can say can prepare you or make you understand what life is like in the NICU. Our story is one of great loss, but there was also a wonderful, great success, as after several surgeries and lots of therapy, Charlie is just like all of his peers. You most likely could not pick him out as the preemie. He is sweet and patient, loving and empathetic… like no other child I have ever known. Sometimes I think that his personality is God’s way of saying “I’m sorry.” Charlie is my hero.

Ben and Charlie

We have come out stronger on the other side of our NICU experience. God has never been more present in our lives and I have come to understand that God did not set us on this journey as a punishment, but rather as a chapter to lead into the next. We have met many wonderful, kind people and made lots of new, supportive friends that we would not have met otherwise. Our faith has depths that I didn’t know were possible. We count each day as a blessing and Charlie has taught us to slow way down. Life is busy, but we feel like we know what is important. We know that it doesn’t matter if the kitchen floor needs to be swept or that we need to go through the mail… it’s a beautiful day, and what we need to do is go for a bike ride, be together and remember that life is about spending time with those we love.

Striding into the Weekend

2011-09-27T15:58:00.000-05:00

I can't believe Strides for NICUs is already here! We are finishing up the last minute details and so excited to be striding into the weekend. We so honored to have so many wonderful sponsors supporting our cause this year.

Thank you to the following sponsors:

Allegro Marketing,

Bremer Bank,

Carr's Tree Service,

Judd and Soleil Palubicki,

KLN Family Brands,

Nadine's,

Natural Nutrients,

Red Roof Animal Hospital,

RedKing Foods LLC,

United Community Bank,

Wedding Designs and Rentals

Check out the story about Strides here in Perham's Newspaper. We are so excited to be joining forces with the city of Perham and celebrating not only our 5K but Harvest Fest. There are tons of fun activities going on including flea markets, pumpkin carving, and concessions will all be available in downtown Perham.

Events for Strides for NICUs include:

9:00 to 10:00 am- Check in and registration begins at Arvig Park for Strides for NICUs
9:00 to 10:15 am- Games and warm refreshments
10:15 am- Meet at the start/finish line to explain rules and to get everyone ready to race
10:30 am- Race time for 5K runners
10:40 am- Walkers begin their 5K walk on the bike path
11:30 to 11:45 am- Awards and final remarks from Taryn and Ryan Krumwiede

We are looking forward to a fun family filled fall day this weekend. Come out and join us for our 2nd Annual Strides for NICUs and enjoy Harvest Fest. And don't forget to stop at a pumpkin patch too!

Wishing

2011-09-20T17:18:00.000-05:00

Today I turn another year older.....

.....and I am wishing for more pink sunsets,

.....wishing life would slow down a little bit,

.....wishing for more vacations with my husband,

.....wishing I could spend more time with my girlfriends,

.....wishing to see a few more rainbows this next year,

.....and wishing my little girl was here to celebrate with me.

NICU Nurse Day

2011-09-15T08:00:00.005-05:00

Happy Neonatal Nurses Day! We love all of the wonderful nurses that help all of our sweet little preemies in the NICU. There is a special place in any parent's heart who has had a preemie in the NICU for the nurses that take such good care of our babies. They often become part of our families even after our babies are out of the NICU.

We were so lucky to have 5 of the best NICU Nurses taking care of our little Ella. I think about them often and know that we wouldn't have survived our NICU rollercoaster ride without them. Happy NICU Nurses Day Diana, Pat, Amy, Betsy and Jess. Thank you for all that you do for families and our little miracles.

Today our guest blogger, Nurse Jodi from Peek-a-Boo ICU wrote a blog from March 4, 2011 about what it is like for a Nurse in the NICU. If you have any NICU questions and would like Nurse Jodi to answer, please leave us a comment. Happy NICU Nurse Day!

The NICU ride, through the eyes of a Nurse
March 4, 2011 By Jodi RN

Parents of premature babies often refer to the NICU as a roller coaster ride of ups and downs, never knowing when to hold their breath and grab on tight or let go and enjoy the ride, all along trying not to throw up.

As a NICU nurse, I can tell you that we experience a similar kind of up and down feeling that lives in the air of a Neonatal Intensive Care Unit. As I prepare for my work day I often wonder what lies ahead of me. Who will I encounter? Will this be an easy day, taking care of growing; feeding babies that I’ve watched come so far and are almost ready to go home with their family? The good moments of the NICU are finding that those babies once fighting for their lives are now off respiratory support, increasing on feedings, being held by parents for the first time, or even gaining the slightest bit of weight. These days make NICU nursing great. But not all days are like this. I must prepare mentally for the moments I come into work knowing immediately from the scene of chaotic hustle and bustle, that the day that lie ahead of me was going to be a difficult, rough and bumpy ride.

“Please secure all loose articles”…

As I prepare for my shift and enter the world of the Neonatal Intensive care, I must throw out any mental picture of what I wanted this day to be, and begin it like any preemie parents has to. I must get behind the eyes of the family, and empathize with them, and try to understand what they may be feeling and going through. This can often be very difficult in times where stress and uncertainty linger. The baby will always be in the front and most important seat in these times of priority, for as NICU nurses we are their biggest medical advocate.

Welcome to the NICU- “Please keeps your hands, arms, and legs inside the train at all times”…

This is life on the edge. Nowhere else in the hospital do they weigh their patients in grams instead of pounds, to avoid a medical mistake or drug overdose. Nowhere else is the margin of error so incredibly small. Everything has to be perfect, there is no room for mistakes as these little lives hang on the line; and I am holding on to the other end of it. We as NICU nurses treat these babies as if they were our very own, and when everything turns out well, we rejoice and celebrate alongside the parents. Yet when the outcome is not what was wanted, even if it was out of our control, we too, like the parents have sadness and grief.

Just like everyone else, NICU nurses have good days and bad days themselves. Good days of personal happiness, feeling elated and energetic. While other days we may feel tired, stressed, discouraged, or even burnt out. There are the days we enjoy coming to work and making a difference and other days we would rather be on a different roller coaster…maybe at Disney World?

It’s important for you to know that we are not here for the great hours, the coffee breaks, or the money- but we are, and always will be here for your baby. There is great satisfaction in taking them through skydiving and mountain climbing to finally smooth sailing as they are discharged home.

At the end of the day I, unlike the parents, get to leave the NICU behind and go back to a more predictable and somewhat calmer world at home. The blessings and depressings of the NICU still remain, but lying beneath my mental and physical exhaustion is the overwhelming feeling of satisfaction that comes along with being a NICU nurse, and really there is nothing I’d rather be.

http://www.peekabooicu.net/2011/03/the-nicu-ride-through-the-eyes-of-a-nurse/

Tell us about your favorite NICU nurse by leaving us a comment. We would love to hear your story.

2nd Annual Strides

2011-09-14T08:23:00.002-05:00

We are so excited to be gearing up for our 2nd Annual Strides for NICUs 5K and Family Walk. We will be hosting our event in Perham, Minnesota at Arvig Park on October 1, 2011. Please come out and join us for a morning of fun, family and friends.

Registration takes place from 9:00 a.m. to 10:00 a.m.; the 5K race begins at 10:30 a.m., followed by the Family Walk/Run shortly after.

This event is open to participants of all ages. There will be two age groups for both Men’s and Women’s 5K divisions, under 25 and over 25. The Family Walk/Run is also open to everyone and is a great way for anyone that doesn’t want to participate in the race to get moving and support a great cause.

The cost for the 5K is $20 for all racing participants. The cost for the Family Walk/Run is $20, but kids 12 and under are free. All paying participants will receive a t-shirt.

If you are interested in attending Strides for NICUs or if you would like to be an event sponsor, contact us at info@ellashalo.com. Registration will be up on our website at http://www.ellashalo.com/ too.

We can't wait to see you, striding together to help babies.

Goodbye Summer, Hello Fall

2011-09-08T12:06:00.000-05:00

Even though I hate to see summer come to an end, I do enjoy fall and the slower pace it brings with it. I am getting excited for some of the fun events and activities that Ella's Halo has planned over the next couple of months. I am so looking forward to cooler sweater weather, cozy curled up evenings with friends and family and spending more time working on EH! Can't wait to fill you all in on our Strides for NICUs event coming up this October, our book drive and also a few other things that we still have in the works.

I received this beautiful sunset over the weekend. My cousin ordered it from here and had it emailed to me. It just felt like a perfect fitting to end summer with a beautiful sunset (and to welcome autumn)!

So Goodbye Summer and Hello Fall!

September Feature Family

2011-09-01T08:38:00.000-05:00

We met this family after our NICU experience. Casa De Calvo family were the March of Dimes' Ambassador Family this past 2011 year and are also very active at Children's in St. Paul. Janet and her husband lost one of their twins, their preemie son Joseph, but also got to experience the joy of finally bringing their sweet daughter Gabriella home after three long months in the NICU. We are so happy to share our NICU bond with the Casa De Calvo family.

Joseph and Gabriella Casa De Calvo

Written by Janet Carlson-Casa De Calvo

Former NICU Mommy

Our story begins in late 2005 with our first pregnancy. I was blessed to be able to become pregnant without any difficulty. My pregnancy was going along just perfectly, except that I was nauseous constantly and vomited several times a day. When I went for my 12 week doctor appointment, I was told I was measuring 20 weeks along instead of 12. I was sent to have an ultrasound, because the doctor thought I either had a cyst, I was off on my dates, or I was having twins. As I left her office, I assured her, I wasn’t having twins. I couldn’t be, I didn’t have any risk factors and they did not run in my family. Plus, I didn’t think I was lucky enough to be able to have something so special as twins. Well, as my husband and I were at the ultrasound, the technician told us with a huge smile on her face, “There are two babies in there!” We were beyond ecstatic. We were grinning from ear to ear. This truly was the biggest surprise of our life. This was our first clue that we definitely weren’t in control of what was going on. We couldn’t wait to tell all of our family and friends that we were not only pregnant, but expecting TWINS!!!!

I believe it might be Mother’s instinct, or maybe God’s way of preparing me, but in addition to feeling thrilled that we were having twins, I instantly felt fear. Not fear that we could handle two babies at once, I knew we could do that, but fear that something would happen to one of these babies. I said to my husband on several occasions, “I REALLY want BOTH of these babies. I hope that they both make it.” I didn’t have any reason to have fear as they said at the ultrasound that both babies looked healthy, but they did tell us what I already knew, that the “risks” increase in pregnancies with multiples. Exactly what those risks were, we weren’t sure, but we soon would find out.

I continued along with a healthy normal pregnancy, praying daily that both babies would be healthy and safe. At 19 weeks gestation, our world shattered. Out of nowhere, my water broke with one of the babies, Baby A. After being admitted to the hospital, we were told to go back home and wait to go into labor, and then come back and they would deliver both babies and they would die. Needless to say we were devastated. We truly were in shock. After a night of agony of “waiting” for labor, we pleaded with our doctor that there might be something else we could try to do to save our babies. She agreed to send us down to Minnesota Perinatal Physicians to see what they thought, but not to get our hopes up. Upon first meeting with the specialist, undergoing an ultrasound and an amnio, we were told that the chance of either baby surviving was in the single digit percent rate, but if we were willing to try bed rest he would support us. We were so grateful for at least a chance to try to save our babies lives. I was then admitted to United Hospital, what would become my new home for 6 ½ long weeks.

During my stay there on strict bedrest we had many scares, but the ultimate one came early in the morning on January 20, 2006. I went into labor. I was only 22 weeks along and had been told that we needed to get to at least 23 weeks for any hope of viability. We knew that if I delivered, Baby A, who was out of his amniotic sac, would not survive. After we delivered our first Son, Joseph Anthony Casa De Calvo, we held him, baptized him and cried. He was perfect, just too early, and too small. Joseph was laid across my chest and held my finger. He could not open his eyes. He lived for one hour and nine minutes before passing away into Heaven.

Joseph

It was decided that we would try to stop labor and try to keep Baby B inside. I was taken into surgery to stitch my cervix closed and given a lot of medications to stop labor. We were then told that almost always the other baby is delivered within 48 hours, so you go through 2 labors, 2 deliveries, and 2 losses all within 48 hours. As horrible as that would be, that was a chance we were willing to take. Miraculously, through the power of prayer, and a skilled medical team, we were able to keep Baby B in for three weeks and two days longer! On February 12th, 2006 I delivered Gabriella Lorraine Casa De Calvo. She weighed one pound eleven ounces. She was 25 weeks and 2 days gestation. Here started our entrance into what would become our new home for the next three months, St. Paul Children’s NICU.

Life in the NICU is quite difficult to explain to someone who has not lived it. It is scary, comforting, confusing, isolating, supporting, spiritual, emotional, exhausting, uplifting, lonely, full of love, inspiring, and a constant rollercoaster. Each day I would arrive at 8am and stay until 11pm. Food was not allowed in Gabriella’s room, so I lived on Boost drinks. I pumped every hour and a half, and would freeze every ounce of the precious breast milk in hopes that someday Gabriella would be able to take it from a bottle and begin nursing. Gabriella was on a ventilator and eventually transitioned to a C-pap mask and then nasal oxygen. She was fed breast milk through a feeding tube that went in her mouth and down her throat. She underwent several blood transfusions, and received surfactant therapy for her lungs. (Thank you March of Dimes)! She had jaundice. Alarms would sound frequently throughout the day as she would stop breathing and the nurses would have to come in and get her breathing again. She literally was being kept alive by these precious NICU nurses. She had a PIC line. A serious wound was created on her leg when they pulled off the tape from one of her IVs. She underwent bladder punctures, and regular heel pricks. She was covered in tubes, wires, and stickers. Truly, for awhile, I couldn’t see what she really looked like. Once, I decided to take off her breathing mask to look at her face. It was terrifying as her delicate face had gotten deformed from the pressure of the mask. She no longer looked like she did when she was born. The nurses told us, they THOUGHT her face would go back to normal, but they weren’t sure. Everyday we were grateful for another day with our beautiful special Daughter, and we would pray for one more day. One day at a time is how we got through.

On our second day of NICU life, my husband was wheeling me down from United to the NICU to visit Gabriella. On our way into the unit, we ran into a friend of mine from college. Oddly enough, she had just delivered a baby boy that was there, but after a week he was already going home. The next day she gave us a bear that when you squeezed it’s belly it said, “Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night and keep me in their blessed sight. Amen.” We believed that Joseph was Gabriella’s angel watching over her from Heaven and protecting her. That night we started a nightly ritual that we would do every single night of Gabriella’s NICU stay. Before we had to leave her for the night, we would pray with our hands over her and then we would squeeze the bear’s belly as we walked out. I would cry every single time. To this day when I hear that precious prayer out of that bear’s belly, I get tears in my eyes.

Gabriella

On April 27th, 2006, on her Daddy’s Birthday, Gabriella was finally able to come home with us. That was the best Birthday present my husband ever had. Once home, we brought her around from room to room with us, never letting her out of our sight. For almost 8 months we kept her in the cradle next to our bedside. We had been separated long enough! As thrilled as we were to be home, we found that we actually missed our NICU room and nurses. It also was quite bittersweet, because although we were fortunate enough to be able to bring one baby home in our arms, we also had to pick up one baby’s ashes from the funeral home.

I feel very strongly about volunteering and donating to organizations like Ella’s Halo, the March of Dimes, and Children’s Hospital. I now volunteer in the NICU at Children’s so I can help support other families who are going through similar struggles, and to be able to give back to a special NICU and staff who gave our Daughter the very best of care. When I am in the unit and I pass by Gabriella’s old room #13, I am instantly taken back to a time where time almost seemed to stand still. A time where we were so focused on our mission of praying for our Daughter’s life, that nothing else seemed to matter. A time where we literally were in our own world. I also am reminded that each baby is a gift, no matter what their start at life is, or whether or not they make it out of the womb alive. We are blessed to have had the opportunity to have them in our lives.

Now, 5 ½ years later, Gabriella is starting Kindergarten. We marvel at all that she has been through, and all of the miracles that have taken place in order for her to not only be here with us on Earth, but to be truly thriving. We also have a deep appreciation for every person who contributed towards making Gabriella’s life and health as amazing as it is now, and who supported us during our difficult time. We can now look back on our experience and really feel blessed for all that we have been through, for it made us stronger, more spiritual, more loving, more appreciative, and better parents. Most importantly it gave us our children, both here on Earth, and in Heaven.

Top Ten Tuesday

2011-08-30T13:14:00.000-05:00

Sometimes I think about our time in the NICU. It amazes me how I still miss things about the NICU. You aren't supposed to want to be there, you aren't supposed to grow to love things about the hospital, and you aren't supposed to develop good friendships with the doctors and the nurses. Here is my top 10 things I miss about the NICU.

1. I miss knowing that a little girl was waiting for me to get to the NICU every morning and she would be so happy she would wiggle her toes in excitement when she heard our voices enter her room.

2. I miss my daily coffee runs for cold de-caf frappachinos for me and for the nurses and having the coffee guy downstairs know exactly what I wanted before I ordered. It was the only thing I could count on being the same each and every morning.

3. I miss the humming of Ella's vent and the beeps of the machines. It is all we ever heard when sitting next to my baby girl's bedside. Her humming vent would sometimes put me to sleep.

4. I miss hearing her nurses call her Tootsie and putting pink little bows in her pretty blond hair. Ella's primary nurses paid special attention to our little princess making sure she was always well cared for, that she had the cutest blankets, and the sweetest pictures hanging on her walls. They not only took care of Ella but provided constant hugs and support for us too.

5. I miss the morning and evening rounds the doctors and staff did regarding Ella's health. They made us feel like part of her care team and let us know that we were her biggest advocates. Our voice mattered to those doctors. They wanted to teach us everything they could about her care so that we could better understand therefore be better parents to our preemie daughter.

6. I miss taking her temperature and changing her diapers. Those are the very few things we could do for our baby and each day we took pride in doing these simple things for our daughter. I would even get super excited over a poopie diaper. I love those nurses for helping us feel involved and needed as Ella's parents.

7. I miss kangaroo care. Kangaroo care is when a mother or father gets to snuggle with their little preemie, skin to skin. I got to hold Ella a few times in kangaroo care and we would cuddle for hours. She would even make sweet little noises letting us know that she liked it too.

8. I miss the smell of the soap in the hospital. I know this sounds odd, but after washing your hands constantly for 83 days, the smell sort of grows on you!

9. I miss going down to the cafeteria or into the family room to make a quick phone call and running into other parents of NICU babies. Without knowing anything about them, they became instant friends because they know all too much about the NICU rollercoaster. The common thread of NICU life runs deep in all parents who has ever had a child in the NICU.

10. I miss when Ella would squeeze our fingers and we would rub her blond little head. She would peak out at us just to make sure it was her mommy or daddy comforting her. We would hold her little hand for hours and she would never want to let go of our fingers. We would kiss her little toes and her sweet little checks to show her just how much we loved our baby girl.

If you have been in the NICU, what are some of the things you miss?

Halo Happenings (August Edition)

2011-08-25T12:03:00.001-05:00

Since so much changes around here and so quickly, I thought it would be fun to do a monthly update called Halo Happenings which we will feature on the 25th of every month. Obviously as things come up, I will still post about what is going on with Ella's Halo but thought Halo Happenings would be a good look at what is to come. We hope to eventually launch this into a quarterly newsletter that we can send out to our supporters and donors very soon.

Coming up on August 30th, Ella's Halo will be serving dinner at the Ronald McDonald House again. Last year we had so much fun helping families with sick children in the hospital while giving them a warm meal, that we decided to do it again this year. We posted a vote on Facebook about what we should serve and tacos won. We will be having a taco bar and enjoying a fun evening with families.

Also we are excited to have added a new board member to our group. Angela Kruchten will be working with us now and we are excited to have her enthusiasm and networking skills to add to Ella's Halo. Welcome aboard Angela!

We have two exciting events coming up this fall as well. We are gearing up for a book drive and also for our 2nd Annual Strides for NICUs 5K and Family Walk in Perham, Minnesota. Dates and information will be coming out very soon! We are so excited to have had Small Bird Studio design our new logo for our Strides event. So check back soon for our upcoming event information! We have exciting things happening this fall!

Don't forget our Macy's Shop for a Cause this Saturday August 27th. Donate $5.00 and receive a coupon to get 25% off at Macy's. Who doesn't love to shop especially when you know you helping babies while you SHOP!

And also our blog has been nominated for Best Blogger by Parents Magazine. We are so honored to be part of this group of awesome bloggers. Please take a minute to go on and vote for us!

Miracle

2011-08-19T09:54:00.000-05:00

Kids' Company

2011-08-16T10:55:00.001-05:00

I love it when we get emails from people wanting to help support our cause and/or wanting to donate to Ella's Halo. I love it even more when supporters approach us with their own idea about how they can help Ella's Halo.

Kevin from Kids' Company in Prior Lake, Minnesota contacted me and wanted to find a community service project his 5th grade class could do this summer. Together we came up with a blanket/book drive and from there the kids took over and did all of the work arranging the donations and making blankets. What an awesome lesson for these kids to learn about helping their community and others in need. Plus we got to go and talk to them and thank them in person for all of their hard work. It was a fun day meeting all of the 5th grades that are helping us continue our mission, and the hugs and high fives were pretty fun too.

Check out the story and pictures about Kids' Company helping Ella's Halo. Prior Lake American Newspaper did a feature story on August 5th with a follow up story coming out this week.

Local angels help ‘Ella’s Halo’
by Meryn Fluker
Prior Lake
August 05, 2011

WestWood Elementary School’s halls are full of students, in lines, in pairs or alone, with adults guiding and directing them, even though it’s summer. Winding through the building’s maze of corridors – forward, a quick left, then a right – punctuated with easels reminding students of the activities they’ll soon participate in, eventually you’ll come to a bustling room full of excited fifth-graders and the adults who care for them.

On Tuesday, the room’s floor was dotted with partially finished “no-sew” fleece blankets, the cozy and colorful leftovers of a morning activity and the child care’s latest charitable venture.

Since last week, Kids’ Company students in grades four through seven have directed their energies toward benefiting Ella’s Halo, a Richfield-based nonprofit dedicated to easing struggles for families of children born prematurely. The fifth-graders, corralled by Site Leader Kevin Humbert, have taken the project’s reins. The students drew and designed posters advertising the drive, which collects books and disposable cameras for Ella’s Halo to provide to families whose children are in neonatal intensive care units (NICUs), and also decorated boxes to hold donations. Area parents Ryan and Taryn Krumwiede founded the charity in late 2009 and named it for their prematurely born daughter Ella, who lived in an NICU for 83 days before passing away.

“One thing the hospital lacks is small comforts of home, those personal items new parents have for their newborn babies,” Taryn Krumwiede said. “Having a special blanket to wrap Ella in was important to us, and it helped us be able to feel like her parents even though doctors and nurses were really taking care of our daughter on a daily basis. We felt that others in the NICU missed those small comforts of home, too, so we wanted to do something to help bring that into the hospitals.”

The Kids’ Company fifth-graders got crafty, making five sizes of the no-sew bed and crib coverings – often called “tie blankets.” That day, trios and quartets of students made about 30 blankets, 10 more than Humbert had anticipated.

“I was obviously excited that we were able to exceed that goal,” he said. “We had 37 kids and every single one of them participated.”

The students participated despite varying levels of familiarity with the craft.

“In third grade, we had something just like this, where we made blankets and scarves,” said 11-year-old Cameron Mathis of Savage.

“I knew how to tie them because I was in Girl Scouts, but I didn’t know how to measure and cut them,” added 10-year-old Leah Keil, also of Savage.

Cameron even made an extra blanket in his group. The students cut and measured the fabric and tied the fleece pieces together, completing the blankets in time for an Ella’s Halo representative to pick them up. The blankets are made to fit beds in Children’s of Minnesota’s Minneapolis and St. Paul hospitals and the University of Minnesota’s Amplatz Children’s Hospital.

Humbert was unaware of Ella’s Halo until he began organizing Kids’ Company’s involvement.

“I was kind of struggling with, ‘How far do we want to go with this?’” he said. “As site leader, I kind of felt like it was my duty to get it started.”

Humbert is supported by co-site leader Katie Youngblut and assistants Jessica Arseneau, Renee Orton and Jean Borger.

“I think it’s fabulous,” Borger said of the project.

Though Ella’s Halo helps families of children far younger than the Kids’ Company fifth-graders tying those blankets, Humbert thought the two organizations were a great match.

“I think because it’s for premature babies, they can make that connection more, because many of them have little brothers and sisters who are babies,” he said. “I just think they’re at the age where they’re able to appreciate the cause.”

Krumwiede is excited by Kids’ Company’s involvement and said it would be a “great lesson” for the students that will last a lifetime.

“I love the fact that other children are organizing this drive and wanting to give back,” Krumwiede said. “Not only is Kids’ Company helping the families and babies in the NICU, they are also learning life lessons about giving and caring for others in need. We are so thankful for their kind donations and for them wanting to support our cause.”

Humbert worried that the students would struggle with the work, even though they’ve done community service crafts this year and in past sessions. The students trust Humbert and responded positively to making the blankets for Ella’s Halo. Ten- and 11-year old girls chase Humbert as he moves throughout the room, calling choruses of “Kevin” – the leader swears he hears his name 4,000 times daily at work.

“I think it’s pretty helpful,” Cameron said. “It was pretty fun. I wouldn’t mind doing that for an hour a day every day or once a week, making blankets.”

WestWood Elementary- 5th Grade Class donating to Ella's Halo

Check out the article here at Prior Lake American.

Summer Ramblings

2011-08-09T12:53:00.000-05:00

I don't know where this summer has gone. It sometimes makes me so sad to think how fast time is moving. To think that a little over two years ago we said goodbye to our little girl. It still hits hard sometimes to realize that our life has continued to move on, our lives have now settled into a new normal, and that we still don't have our daughter.

So as summer is slowly coming to an end, I thought I would do a top five of what we are currently enjoying this summer.

1. Summer Activities: Summer has been filled with picnics, weddings, BBQs, long weekends at cabins, soaking up sunshine, block parties, mini vacations, boating and being with friends. I really couldn't think of any other way I would want to spend June, July and August!

2. Sunsets: Pink sunsets out on the lake just melt my heart in the summer. I love sitting on the end of the dock and watching the sun sink down into the water. It makes me feel like my little girl is showing me a little piece of heaven.

3. Baseball Games: Watching the Minnesota Twins is one of our favorite things to do in the summer. Ella was a big fan of the Twins too. Her daddy even bought her a pink bat and ball. We just love going to the games, sitting outside, eating hot dogs and cheering on our favorite team. However, it does help if they are winning!

4. Bonfires: I love sitting around the fire with good friends, telling old stories, laughing until your sides hurt and singing along to music. Roasting marshmallows for our smores and taking in the stars are probably the best things about summer nights.

5. Ella's Halo Projects: We are looking forward to the launch of our upcoming book drive, meeting with students at Kids' Company in Prior Lake, Shop for a Cause with Macy's on August 27th, and serving dinner again at the Ronald McDonald House. All of these things in August as summer comes to an end.

What are you enjoying this summer?

August Feature Family

2011-08-01T09:22:00.000-05:00

This family is very near and dear to our hearts. Their little guy, Colby, was born in March of 2009 and was in the hospital pretty much the entire time we were there with Ella. We are so lucky to have his parents as friends and to see how much Colby changes and grows. Colby's parents stayed at the Ronald McDonald House during their NICU stay and is one reason why Ella's Halo volunteers at the RMH.

Colby Thompson

Written by Heather Thompson

Former NICU Mommy

In early 2009, my husband and I were preparing for the arrival of our first child. The pregnancy was near perfect – just a little bit of nausea in the beginning that only lasted about a week. At the 20 week ultrasound, we learned we were expecting a little boy and that he was measuring exactly to his due date of June 13. Then, on day one of week 27, my water broke. We rushed to Trinity Hospital in Minot, ND (which was an hour away), where we learned the baby was in the transverse position (sideways) and I was fully dilated. During an emergency c-section, the doctor also discovered a placental abruption. Colby was born at 3:14 AM on 3-14-2009. He weighed an even 2 pounds and was 13 ¾ inches long. His early arrival was completely unexpected. Even today, there is no answer as to why he came 13 weeks early.

It was a few hours before I was taken up to my room from recovery. I had developed a fever and was not allowed in the NICU to see my baby. He was a day and a half old before I got my chance to meet him. Thankfully, the wonderful nurses in the NICU had been taking pictures and printing them out for me. Colby was pretty beat up from the delivery – his entire face was bruised, as were his legs and feet. But, he opened his eyes almost right away and had a head full of blond hair. He was handsome. I knew he was small, but seeing him for the first time took my breath away. It is hard to see in a photo just how small these premature babies are. My husband could slide his wedding ring up Colby’s arm with no trouble.

We did not want to go to our home an hour away from our little baby. Luckily, the hospital has a guest house for family members of ICU patients. It is located right across the street from the hospital and was so convenient for us. The first week or so, it was my routine to get up at 3 AM to pump breast milk and when I finished, we would walk across the street to say hi to our little guy. It was my favorite time to visit him. We were usually the only parents there and it was so quiet. We could see Colby and chat with the nurses as long as we wanted. We quickly learned that life in the NICU is a rollercoaster. One day, the doctor is coming to you and preparing you for the worst. The next day, things are better than ever. We realized that with each exam, test, x-ray, and ultrasound, you should never assume the results – you are almost never right. “One day at a time” became our motto. We used the CaringBridge site to keep our family and friends updated on Colby.

Colby was one week old when I got my chance to hold him for the first time. It took a lot of prep work and 2 nurses to get him moved from his isolette over to my arms. I held him for about 2 hours and it was wonderful. For those 2 hours, the worry and anxiety melted away. I was surprised to hear Colby making little baby noises – grunts, groans, and moans. You could not hear those noises when he was in his isolette. Colby was actually a very strong, healthy baby – his main issue was being premature with premature lungs. He was on a ventilator but was doing pretty well. He was getting nutritional supplements and just a few meds that went along with the ventilator.

At 20 days old, things changed. Colby was requiring more oxygen use than ever before. It became apparent we would have to change hospitals. The Trinity NICU in Minot is only equipped to handle a certain level of care, and now Colby needed more than they could provide. The ventilator was too much for his little lungs and began to harm more than it helped. He was developing emphysema and had to be transferred to a higher level facility. At 3 weeks old, he was put on an airplane headed for the U of M Medical Center, Fairview in Minneapolis (now U of M Amplatz Children’s Hospital). There was room for me to fly along, but my husband had to make the trip by car – a 10 hour drive. Once there, we were totally lost. We had to find our way around the hospital and NICU, we had to find a place to stay, and we had to find a way to cope with a whole new set of emotions. Suddenly, we were 10 hours from home with no idea when we would return. The NICU social worker got right to work, and thankfully, the Ronald McDonald house had room for us move in right away. Next began the process of learning the set-up, routines, and staff of the “new” NICU. The first thing the doctor told us was that Colby was doing much better than expected. That was the best thing to hear at that moment. He was put on a jet ventilator, which is gentler for the little lungs of a premature baby. The first few days, there was a lot of “tinkering” with his ventilator settings to get things just right. It was kind of a waiting game.

Time passed so slowly. Looking back on pictures, I realize what was about 2 weeks’ time in my mind, was only a day or two in reality. We had developed a routine that worked pretty well for us. Each day, we’d head to the NICU right after breakfast and hang out there all morning. For lunch, we’d grab something close – either the hospital cafeteria or a restaurant within walking distance. Then, back up to the NICU we’d go until it was time to for the evening meal at the Ronald McDonald House. Of course, as soon as we were done eating, we’d head right back to the hospital until we were ready to get some sleep. Our life revolved around the NICU. Our days were filled with numbers: pounds, ounces, oxygen percentages, milliliters of milk…Family and friends kept telling us how strong we were, but we did not feel strong. Not even close. All we knew was that we had to be there for our baby. There was no choice…you are thrust into this situation and all you can do is try to keep up.

Colby ended being on a ventilator for 6 weeks and 3 ½ weeks later had surgery for bilateral inguinal hernia (groin). 4 days after his surgery, we moved from the Ronald McDonald House into a hospital boarding room to help us prepare for his discharge. One week later, we were told we could take him home. Colby had been hospitalized for 11 weeks (80 days). We had a 10 hour drive home and I was so nervous, I had an upset stomach for probably the first 3 hours. We brought him home on oxygen and a few medicines. He received oxygen through a nasal cannula until he was a little over 6 months old. About a month after we brought him home, we had to return to Minneapolis so he could have surgery again on the groin hernia, though just the left side this time. He was hospitalized overnight and we were on our way home the next day.

Today, he is a happy, very healthy almost 2 ½ year old. He has had a few ear infections that required antibiotics and a couple colds that he recovered from on his own. He is a little smaller than the average 2 ½ year old, but he is within range for his age.We are very aware of how blessed we are. When Colby was first born, we asked ourselves, “Why did this happen to us?” Today we ask ourselves, “How did we get so lucky?” We took the longer, bumpier road to get to where we are today, but I know it is all just a part of who Colby is.

Shop for a Cause

2011-07-21T14:39:00.000-05:00

CaringBridge

2011-07-13T17:19:00.001-05:00

During our stay at the NICU with Ella we received so many loving emails, phone calls, notes and CaringBridge messages. We started our CaringBridge to help keep all of our friends and family up to date on the daily and sometimes hourly changes that were happening to our little girl in the NICU. It is a wonderful organization that helped us tell Ella's story while having others give us hope through their messages.

Now even two years later, I go back to her CaringBridge site and re-read our experience and our story. Not to mention the many encouraging words, notes of prayers and well wishes. It still can bring tears to my eyes remembering where we were and how far we have come with Ella's Halo. Ella's CaringBridge site is sort of like our baby book. It is where we documented everything in our baby girl's short life and is such a special reminder of our time together as a family.

CaringBridge offers a free website service to help people connect with others during a health situation. It was started back in 1997 by a woman whose friend had a premature baby in the NICU and after 9 days in the hospital passed away.

CaringBridge has helped so many of our friends share their own personal stories about a loved one, about other preemies in the NICU, or about facing their own battles of cancer or other health issues. I find myself coming back to CaringBridge to check in on so many people, even sometimes people I don't know, just to read their inspiring stories of strength and bravery.

We are so honored to have a link to CaringBridge on our website under our Ella's Friends! But we are so thankful that CaringBridge has Ella's Halo as one of their Nonprofit Alliances. What a beautiful partnership between two organizations wanting to help others and that were both started in memory of two sweet preemie girls.

Thank you CaringBridge for letting us tell our stories and for giving us a place to encourage others along their journeys too.

Random Thoughts

2011-07-07T16:59:00.000-05:00

It has been awhile since I have sat down and posted my thoughts on here. Here are a few things that have been on my mind lately.

We spent the 4th of July up at the lake this past weekend. It was nice to have a few extra days to relax. The weather was perfect! I even got out to the cemetery and took a beautiful picture with a pink sunset in the background. Every holiday always brings a little sadness and reminds us that someone is missing. But I am sure my baby girl was celebrating and enjoying the fireworks too.
It was nice to have a little vacation, however, when I get back my mind races with new ideas for Ella's Halo. We are meeting with a couple of people from Amplatz Children's Hospital to share an idea I have brewing. Looking forward to get their feedback and their ideas about how we can get this idea moving.
We love working with other organizations and meeting other people who have started small nonprofits too. Especially ones that help children! We have been tossing around an idea to put together a joint event with another nonprofit called Sweet Dreams for Kids who donates pajamas to sick kids in the hospital. How perfect would blankets and pjs go together for kids who are in the hospital.
Faith's Lodge, another nonprofit that is near and dear to our hearts, was hit by a bad storm this past weekend. They are in need of volunteers and donations to help in the clean up. Check out their facebook page to learn more about ways you can help.
Ryan and I had a quote featured in the Children's Hospital and Clinics of Minnesota Annual Report. Check it out here to see our quote on their website. We are so honored that they choose our quote about why we love Children's and why we help donate to the NICU.
On June 16th and June 20th, Ella's Halo donated another 200 welcome bags to Children's Hospital and Clinics of Minnesota at both the St. Paul and Minneapolis locations. It brings our total of bags donated since January 2011 to 500! How awesome is that!

As always, we are looking for people who would like to partner up with ideas, discuss donation options, if you would like to be our next Feature Family, or if you want to donate your talents such as graphic design work, writing or other advertising skills and also MOMs clubs. We would love to come to talk to MOMs clubs, boy/girl scouts, or other organizations looking for ways to help the community. We have some fun projects coming up and are looking for volunteers and people who will help us spread the word about Ella's Halo. Please email me if you are interested in helping out in any way at info@ellashalo.com. We would love to hear from you.
Lastly, I am so looking forward to our next board meeting this month. I love getting together with our board and sharing ideas about how we can continue to help others. Plus we need to start working on our next event and work on some of our goals! I can't wait to see them, we kind of miss them since we really haven't gotten together since BOWLING!

Wow, I guess I need to get better about posting what we are thinking and what we have been up to on here. It is getting to be a long list! The first half of the year was awesome and I am so excited about what the second half of 2011 will bring!

July Feature Family

2011-07-01T08:53:00.000-05:00

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story, please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.

July's Feature Family had two children in the hospital at two different times. As preemie parents, our paths have crossed with this family and we enjoy seeing them each time it does. Julie is on the STEPs group at Children's Hospital in St. Paul and works hard to make the NICU a little better for parents and babies!

Alexander and Isabella Bixby

Written by Julie Bixby

Former NICU Mommy

In 2006, I was pregnant with my first child and had an easy, non-eventful pregnancy. I had read every single pregnancy book out there and received the daily emails from multiple sites explaining what was going on at that particular time in my pregnancy. I had done so much research and felt as prepared as possible. I had plans to deliver at a hospital in Woodbury where my OB/GYN delivered. I had everything perfectly planned out. That was, until my water broke unexpectedly at 33 weeks.

At the time, I wasn’t sure what had happened and decided to call my OB/GYN to see if the feeling I had was normal. They weren’t sure but told me I needed to be seen just to check to see if my water had broken. My OB/GYN called back and told me that they had realized I was earlier than 34 weeks and therefore the hospital I had planned to deliver at wouldn’t see me. They suggested a few different hospitals and told me to call my insurance company to determine which I could go to. Still, I didn’t even think about a NICU--none of my books really even covered that....at least not at the 33 week chapters. We hadn’t even taken our parenting classes.

We randomly chose United Hospital as it was closest to our house. It was a decision that would forever affect our lives. I do believe that everything happens for a reason and that fate actually sent us to United so that we would be next to Children’s Hospital.

We checked in to L&D at the hospital and they confirmed that my water broke but I wasn’t having any other signs of labor. So, they put me on IV medication and the doctor came in to tell me that they were just waiting for a room to open up in the area dedicated to the bed rest mothers. The goal was to keep the baby inside as long as possible, which meant I could be at the hospital on bed rest for 7 more weeks.

Later in the day, while waiting for the room to open up, a nurse came in and asked if I was feeling the contractions. I wasn’t—thankfully! I think my brain/body were in such a whirlwind/haze that I still don’t think anything registered. Everything was definitely out of my control.

Less than a day later, on December 1, 2006, our son Alexander was born. He was a very healthy 5 pound 33 weeker. I don’t remember much from those first few days. I’ve tried to go back mentally but I just can’t. My perfectly planned pregnancy and delivery was anything but and I think I was in a form of shock. It was my first and I didn’t know any different other than what all the books had told me.

What I do remember is that I was able to see my son quickly and then he was taken down to the NICU. My husband accompanied him and the doctors.

Alexander Bixby

It was a few long hours before I was allowed down to meet my little guy. I still remember going into the room and only being able to put my hands in the holes on the isolette. We had to wait a few days before we could hold him whenever we wanted.

In total, he spent 21 days in the NICU and was released just a few days before Christmas. Bringing him home for XMAS was the best gift!

Having a baby in the NICU is not how you envision your birthing experience. Leaving the hospital without your baby is not in your plan. But it was our reality.

Having a baby in the NICU is anything from normal and there really aren’t any books that can prepare you for it. What can prepare you is knowing there are other families out there that have been in your shoes. I still remember receiving an email from a neighbor of mine who I hadn’t even met who had a NICU baby just 6 months prior. Her words meant so much to me… knowing there was someone else out there that understood my situation. She is now a very dear friend of mine and I still have that email she sent me.

No one is better off or worse off in the NICU… each child is different. Some babies are healthy, some are not. Some are big, some are very tiny. But the common thread is that there are families that are all equally as worried, scared and fearing the unknown. I spent as much time as possible in my son’s room trying to bond the best I could with my little boy who was closed in an isolette and not at home where he should have been.

I did feel helpless at times, but I tried to make the best of our situation and surroundings. Children’s NICU in St Paul has amazing private rooms where every detail is thought of to help families and their babies. There wasn’t much I could give my son right away but what I could give was a soothing, quiet environment much like the womb. I would nap on the couch in our NICU room and would lower his isolette almost to eye level with me so I felt like we could nap together even though he was in his isolette and I was on the couch. As ironic as it may seem, in this chaotic time, this room became my peace...my quiet...my time alone with my son.

It definitely was an emotional time....many times coming back from lunch or a quick restroom break and it was all I could do to keep myself from sprinting back to the room where I would come in, close the curtain and door and sit on the couch next to my son and cry. It wouldn’t last long....as comfort seemed to take control again.

Some of the most basic things that one would take for granted actually helped me more than I would have ever expected. Something as simple as a rocking chair in my room allowed me to hold and rock my baby that I wasn’t able to bring home to rock. Kangaroo care became a routine of our days and something my husband and I looked forward to in “our chair.”

When we decided to get pregnant again, we took precautions to help our baby stay in utero as long as possible. However, even after 16 weeks of Progesterone shots (I became a pro at receiving these painful shots), our daughter arrived early, just like her brother, at 33 weeks.

Again… I felt that same haze/bewilderment that I had with my first born. Even as a NICU veteran, it was just as scary and foreign the second time around. Just as each child is different, each NICU stay is different as well. And this time, it was complicated by a needy 2 year old boy at home who was longing for his mom and dad. We only spent 12 days in the NICU with our daughter Isabella.

Isabella Bixby

2 NICU babies and 2+ years later, we have 2 healthy and happy children. Not exactly how we had planned for them to enter the world but that is how their story began. Today, we put Children’s Hospitals and Clinics of MN/St Paul NICU at the very top of our list for our charitable giving. Nothing makes us happier or prouder than to make even a small difference on the unit where both of our babies spent their first few weeks of life.

We will always have a special place in our hearts for Children’s St. Paul NICU....it was the address/home for both of our kids for the first few weeks of their lives. Would I change our experience? Of course! I would have loved to have had my 2 children home with me when I was discharged from the hospital. But, given that wasn’t an option or our reality, we couldn’t imagine being anyplace else.

Turtles

2011-06-27T12:52:00.000-05:00

On Friday June 24th, Ella's Halo sponsored a turtle at the University of Minnesota Amplatz Children's Hospital Turtle Derby. It was the 25th year that the hospital did this fundraiser for families, patients, hospital staff and community sponsors. It was a beautiful summer afternoon outside the new hospital.

The new University of Minnesota Amplatz Children's Hospital! Home of the 25th Annual Turtle Derby Day. Click here to read about the hospital and their Turtle Derby.

Ella's Halo's Turtle did not win, but it was a fun day raising money for the hospital so they can provide comfort items to their patients and families. Even making the day a little more perfect, all of the turtles were brought in from our hometown, Perham, Minnesota!

Daddy

2011-06-19T20:43:00.000-05:00

Happy Father's Day to all Dads!

Thank you for spending time with us doing the things we love.

Thank you for holding our hands when we are scared.

Thanks for cuddling us when we need a little extra love.

And thank you for all of the good night kisses.

Music To My Ears

2011-06-16T10:09:00.000-05:00

Today marks two years since we lost our sweet Ella. There are many things we miss about our little girl, but one thing I know we both miss is sitting by her bedside listening to music. When Ella was in the hospital, she loved listening to her lullabies. We listened to Twinkle, Twinkle, You Are My Sunshine, and Somewhere Over the Rainbow on repeat for 83 days.

As June 16th seemed to approach, I was trying to find our little something special we could do to remember our angel. So last week Ryan and I went for a walk around one of the beautiful lakes in Minneapolis. We stopped and listened to music at the Lake Harriet Band Shell and had ice cream. The park hosts music every evening during the summer and it is free to the public so we decided to stop and enjoy the sounds.

It was a nice summer evening and as we listened to music we glanced down and saw names written in the pavers. The park sells pavers by the band shell and you can have names, quotes or anything etched and personalized! It was perfect and almost like some little angel tapped us on the shoulder and said I belong here. It felt perfect to have Ella's name etched in a paver and placed in front of the band shell so that she can enjoy music by the lake.

The Lake Harriet Band Shell. The pavers are now placed under the benches.

Every evening during the summer there is free music for the public to enjoy.

This is the lake behind the band shell where we release Ella's birthday balloons.

We can't wait to go to our little lake and see her name as music is playing in the background. It just sounds like music to my ears.

Happy Angelversary Ella. We miss you every day!

Here is the link to the park page to learn more http://www.peopleforparks.net/index.html

Lessons Learned

2011-06-14T13:31:00.000-05:00

My sweet little girl has taught me many lessons. Here are just a few little lessons she has left me with.

1. Life doesn't go as planned. So I need to stop planning each little detail of our life and sit back and enjoy the ride.

2. There are just some things that are simply out of our control. No matter how much you pray, how much you wish on shooting stars or how determined you are, sometimes you have to sit back and put it into God's hands.

3. Even when you don't think you can keep going on, somehow you still do. We are all stronger than we ever thought we could be. Looking back over the last two years I see how much this experience has changed us and how we have gotten so much stronger.

4. We regret more about the things we didn't do than the things we did do. I have learned to take more risks and do things I believe in because I don't want to look back on my life and think I should have followed that dream.

5. I have learned that it is not what you have in your life but who is in your life that really matters. I am reminded by this every day when I look at my husband and remember my sweet Ella.

6. Life is a journey full of obstacles. We will have challenges along the way but I need to use these experiences to help make me a better person. If life was perfect we would never have a chance to find ourselves.

7. Live your life how you want to live it, not how people want you to live your life. Never follow the traveled path, because it will take you where others have been. I tend to do what others sometimes expect of me and have learned that sometimes we all need to find a new path. Probably the least expected way. Luckily our new path lead us to Ella's Halo.

8. Enjoy life because we might not have the chance to do it tomorrow. Life's too short. Live everyday to the fullest, laugh when you can, and love with your whole heart. Ella taught us that you just never know when your last day will be so live everyday like there might not be a tomorrow.

9. Every day may not be good, but there's something good in each day. It is okay to have a bad day but don't forget to look for the little things that make each day a little better. Twinkling stars, a singing husband, warm coffee, or a pink sunset. I have learned to look for these sweet little things each day.

10. Nobody can do everything, but everyone can do something. Ella left me with a passion to help others. I may not be able to change the world, but knowing we are helping one baby or one family in the NICU is the something I need.

Terrible Twos

2011-06-09T13:58:00.000-05:00

One week from today will be two years since we lost our little girl. I can't believe how it has already been two years and how vivid those memories of that last day still are and probably will always be.

I know that if Ella was here we would be going through the terrible twos with a little toddler. I sometimes picture how different our lives would be with a spoiled little blond haired girl running around. But now, the terrible twos has a whole new meaning to us. As parents who are grieving the terrible twos means something so different.

The first year after Ella passed away, it was very difficult. I believe we were just trying to survive and get through that first year together. It was hard year, I cried so many times, my heart always hurt and I felt that we would never be really ever as happy as we once were. People wanted to hear our story, ask us questions about our baby girl, how we were doing and even let us cry on their shoulders. People expected this from us and didn't seem to think it was weird or strange for me to get tears in my eyes when someone would mention her name.

Now after two years I sometimes think it is even harder. People talk about her less, ask us about her less and people we meet don't know about her. The pain might be less raw but the pain is there just different. The hurt of having to move on and find a "new normal". The little sting of someone not knowing about our little girl. Having others not remembering. The looks of wonder about why we haven't moved on and had another baby. Feeling guilty about bringing her name up. Knowing that a little bit of her memory and her life is starting to fade away into the past. To me, that is really what our terrible twos are all about. Two years later and knowing that it is still just plain hard.

I know that even in the years to come it will still be hard, we will still cry, we will always have a missing piece to our hearts and we will continue to slowly find happiness in our lives. And sometimes as a parent, you just have to face those terrible twos.

Baby Steps 3K

2011-06-06T14:39:00.001-05:00

Children's Hospitals and Clinics of Minnesota hosted an event called Baby Steps 3K and Family Reunion. They raised money for the Minneapolis and St. Paul Children's Hospital NICUs! Walkers helped to raise over $46,000 for the NICUs and over 1,700 people participate in the 3K walk.

Ella's Halo sponsored the Water Stop during the 3K. It was so fun to see so many walkers, old and young, out walking for NICUs on such a beautiful June morning.

We had awesome volunteers helping to spread the word about Ella's Halo and passing out water cups to the many walkers. Ella's Halo can't wait to help out again next year and support Children's Hospital NICUs!

June Feature Family

2011-06-01T08:43:00.001-05:00

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story , please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.

June's Feature Family were in the hospital the same time we were there with Ella. Evelyn Titus was Ella's first little friend and neighbor in the hospital. Just this past month the Titus family was helping to support Ella's Halo at Bowling for Babies! It was so nice to see their little girl enjoying the day and bowling to help other little NICU babies like her.

Evelyn Titus

Written by Amanda Titus

Former NICU Mommy

Our story starts at the 20 week ultrasound. I will never forget that ultrasound and the technician who seemed very nervous – so nervous that we thought he was new! Turned out he knew something was wrong with our baby. The ultrasound showed very little fetal growth since the last ultrasound 10 weeks earlier. I was immediately afraid for our little girl’s life! We were referred to the University of Minnesota and met with a specialist and had more ultrasounds at 23 weeks and 26. Both showed the same thing – little fetal growth. I guess you could say we knew we were going to have a preemie by this time, especially when the doctor told us we would be lucky to make it to 34 weeks.

At 28 weeks I was admitted to the hospital on bed rest. At the end of my 30th week, I had an ultrasound that showed that my little one had grown very little since the last ultrasound. The doctors made the decision at that time to deliver.

On April 20, 2009 at 31 weeks 1 day we were blessed with Evelyn Grace. We had no idea what to expect. We were very lucky that at Evelyn’s birth she was crying and breathing! She was small at 2 lbs 1 oz. We were lucky enough to even hold her right away! This began our 62 day stay in the NICU.

We live 2 hours away from the hospital. We were very lucky that I was from the Twin Cities and all of my family was still in the area. They were my support system when my husband was back at home working. I stayed with family during the whole NICU stay and my husband would come on weekends after work. Unfortunately, my husband lost his job just a few weeks into Evelyn’s NICU stay. It did turn out to be a blessing in disguise because he was able to be with us in the hospital all the time.

The NICU was a difficult full time job. I would leave at 9am and not get back to a bed until 9, 10 even 11 pm. I couldn’t stand the thought of leaving her at the hospital alone yet I needed sleep to function. I was lucky that I was able to sleep the few hours I had available for sleep. The first time I left Evelyn in tears was about a week after she was born. We were visiting her and were able to hold her. As I was holding her though, her oxygen level would drop. She was stressed out because I, her mom, was holding her. It broke my heart! I left many other days in tears also – when I realized that I was unable to pump enough breast milk for her, when day after day after day I had to leave her at the hospital just waiting to be able to take my little girl home!

The most stressful part for me was not knowing what would happen when I walked into the hospital room each day. Usually for Evelyn, we would find out she had a lot of desats (her oxygen level would drop) and they had to put her on oxygen. Our other challenge was eating. We spent countless hours with Occupational Therapy teaching Evelyn how to eat. We tried different nipples and different techniques to give Evelyn the optimum eating situation – we would have her wear just a onesie to keep her cooler and more awake, we would wrap her in a blanket really tight to keep her attention on the bottle, we would sit her straight up and tilt the bottle up for 5 seconds so she could take a drink and then put the bottle back down to give her a rest, we didn’t allow Evelyn to eat more than 30 minutes at a time – more would burn more calories than she ate in the 30 minutes. These are things that I don’t think the average mom or dad has to think about.

Evelyn finally learned to eat just a few days before her due date of June 21. We went home June 20, 2009. I don’t think I had ever been so happy in my life and what a wonderful Father’s Day gift for daddy.

Two years later, Evelyn is still behind developmentally. She started walking at 23 months. She has a lot of problems gaining weight which is common for babies born so little. At two years of age, she is not quite 20 pounds yet. We have dealt with our fair share of lung problems like pneumonia and respiratory distress that first year of her life along with two hospital stays. The first year of her life we only took her to daycare and the doctor for fear she would get sick again. The latest condition we found out she has is aspiration. We now need to thicken everything she drinks to the consistency of honey. All in all, she is doing great and one day, no one will even know she was a preemie!

Best NICUs

2011-05-24T10:18:00.002-05:00

U.S. News does a report regarding the best Children's Hospitals. And Children's Minneapolis and Amplatz Children's Hospital both were in the top 50 in the country for having the best Neonatology Units. We are so proud to support awesome NICUs here in Minnesota. Ella's Halo is proud to support Children's Minneapolis, Children's St. Paul, and Amplatz Children's Hospital NICUs.

Check the link here to read more.

Thank You

2011-05-19T12:10:00.001-05:00

Wow! Saturday was such a fun day bowling for babies. We raised $10,000 to help little ones in the NICU. How amazing is that!

Thank you to our awesome event sponsors. Your support is so appreciated!

River's Run and Ride Rally

Clinic Sophia

TownePlace Marriott Hotel

Broadhead

Brian & Laura Bredenberg

Another thank you to our lane sponsors:

Andy and Chelsea Marthaler

Reside

Visual Impact

Jenny and Michael Reyes

Wedding Designs and Rentals

Natural Nutrients

Paradigm Reporting

A huge thank you to our many volunteers and board members. Tracy, Alisha, Diana, Gail, Shanna, Lynn, Angela, Misha and Sharzy.....thanks for your help on Saturday! We couldn't have done it without you.

Thank you to Park Tavern for providing a fun venue for our bowling event.

And last but not least, thank you to all of our supporters who showed up to bowl for babies. It was a fun day!

B4B

2011-05-13T15:47:00.001-05:00

Tomorrow is the big day! It has been a crazy and hectic last few days but we are so excited and can't wait for another fun Bowling for Babies event.

Here is a quick run down of the day and of the many awesome prizes we have.

What: Ella's Halo Bowling for Babies

Place: Park Tavern Bowling and Entertainment Center, St. Louis Park Minnesota

Time: Saturday, May 14th from 2:00 - 5:00 pm

Event Schedule: Raffle begins at 4:00pm with the Silent Auction ending at 4:30pm

General Raffle: 1 night stay at Marriott, Twin Cities Live Tickets, Casino stays, MN Science Museum Tickets, $50 gift card to Target, Wine Tasting passes at St. Croix Winery, Tastefully Simple gift set, Rocket Club signed CD, MN Lynx Tickets, Lia Sophia necklace, Ipod, Percy Harvin autographed photo, MN Wild gift set, Duluth gift pack to Great Lakes Aquarium and Vista Fleet, $25 gift card to Crave, Free dessert from Caffe Latte, St. Paul Saints Tickets, MN Twins Tim Laudner autographed photo, $75 Pazzaluna gift card and much more!

Individual Raffles: American Girl and Stages Theatre gift set, Mall of America gift set, Yoda Bowling Ball and bowling passes, mom and baby gift set with photography session, ladies gift set with an 1 hour massage, and a northern MN golf course gift pack.

Silent Auctions: We-Fest Tickets, Date Night at the Gutherie and Seven, Twins Tickets, TPC Golf Pack, a handmade quilt, and Disney passes with 2 airline tickets.

Must be present to win raffles and door prize. Silent Auction closes out at 4:30.

***And don't forget, we have a fun door prize for all bowling guests and a couple of mystery prizes as well. Early bird ticket buyers will be entered into a separate drawing to receive a gift too.

Kids can come and get their face painted and to pick a prize. And there will be pizza available at 3:30 for all bowlers who worked up an appetite.

Coffee with KARE talked about Ella's Halo on Wednesday morning. Here is the link to check it out. And the Star Tribune did their story on Ella's Halo on Tuesday.

What a fun week it has been and what a fun day tomorrow will be.

Star Tribune Article

2011-05-10T09:50:00.000-05:00

Today Ella's Halo was featured in the Star Tribune. Here is the link or read the article below. Thanks Jean for writing such a beautiful piece about Ella's Halo.

Charity helps parents of preemies

Article by: Jean Hopfensperger , Star Tribune

Taryn Krumwiede wasn't expecting to give birth when she went to the emergency room for what she thought was a minor pregnancy complication.

But daughter Ella was born that March evening in 2009, weighing just over a pound. Krumwiede and husband, Ryan, found themselves reeling with emotions and unprepared in many ways for a round-the-clock vigil of their daughter.

"When we went to the hospital, I just had a purse,'' said Krumwiede, of Richfield. "We didn't have toothbrushes, not even a piece of paper to write the doctor's name on.

"But we weren't about to leave,'' she said. "Those first few hours, few days, are critical.''

Baby Ella died 83 days later. The couple decided to direct their heartbreak into something positive, creating a nonprofit called Ella's Halo to help other parents in similar straits.

The nonprofit gives parents some basic creature comforts to tide them over in those first frightening hours. It has donated hundreds of "welcome bags'' for parents at Children's Hospitals in St. Paul and Minneapolis containing items such as cameras, toiletries, reusable water bottles, pens and notebooks.

It also donates CD players, soft lullaby music and even molding kits that make replicas of baby footprints or hands. Those donations go directly to the neonatal intensive care units of several hospitals.

For brothers and sisters in the waiting room, Ella's Halo donates toys, books and DVDs.

The Krumwiedes get their donation ideas by visiting support groups for parents of premature infants. Their work continues to expand, even though both hold full-time jobs. Taryn Krumwiede works in human resources and Ryan is an advertising representative.

"I still consider it a hobby,'' joked Taryn. "But I'm not sure that's how my husband feels.''

On Saturday, Ella's Halo's second annual "Bowling for Babies" fundraiser will be held at the Park Tavern Bowling and Entertainment Center in St. Louis Park. Kids are welcome. For more information, go to www.ellashalo.com.

Mother's Day

2011-05-08T22:01:00.000-05:00

Thank you Ella.

Thank you for blessing me as your mommy. Thank you for giving me the best 83 days of my life. Thank you for letting me kiss your little toes and rub your sweet little blond head. Thank you for making our moms, Grandmas. Thank you for giving me such wonderful memories with my daughter. Thank you for being such an inspiration to me and your daddy. And thank you for letting me hold an angel in my arms.

We Heart Nurses

2011-05-06T10:46:00.001-05:00

Today kicks off National Nurses Day. Nurses Day is always celebrated on May 6th and kicks off National Nurses Week. National Nurses Week begins each year on May 6th and ends on May 12th with activities for nurses throughout the week to celebrate all that they do. So this week we thank all of the nurses that work long hours on their feet helping our babies, mothers, fathers, sisters and brothers.

Thank you to the NICU Nurses that not only give babies special care but the scared parents who need some guidance along the way too. And a very special thank you to our primary nurses that cared for our baby girl Ella in the NICU. Diana, Pat, Betsy, Amy and Jess.....We heart you! It is the NICU nurses that help make the exhausting roller-coaster ride a little easier. It is their compassion and love of their job that is truly an inspiration.

Thank you NURSES......We HEART you!

Area Events

2011-05-03T11:27:00.000-05:00

There are so many fun events coming up to help hospitals, babies, children, families and NICUs. Here are just a few to check out.

River's Run and Ride Rally - Check out this event on Saturday May 7th in Milltown, Wisconsin. This nonprofit was started in memory of River Wheeler and the money they raise goes to help Faith's Lodge and The Compassionate Friends.

Bailey's Blood and Toy Drive - This family is hosting their 2nd Annual event Thursday May 26th at St. Vincent de Paul Church in Brooklyn Park, Minnesota. This event was started in honor of Bailey Moore and all toys donated will be given the the University of Minnesota Amplatz Children's Hospital.

Twin Cities Thursday Happy Hours - They are hosting a charity event on May 26th at Stella's Fish Cafe in Minneapolis, Minnesota. This 2nd Annual Twin Cities Thursday Happy Hours Charity Event is benefiting Children’s Hospitals and Clinics of Minnesota NICUs.

Baby Steps 3K and Children's NICU Reunion - This will be a fun filled day for NICU families to walk together and catch up. This event is set for June 4th at the Minnesota State Fairgrounds. Ella's Halo is helping to sponsor this event too!

And don't forget BOWLING FOR BABIES on May 14th. Check it out here and KARE 11 will be doing a little bit on May 11th about our upcoming event too. We are looking forward to a family fun filled day helping to raise money for Children's Hospital NICUs in Minneapolis and St. Paul and University of Minnesota Amplatz Children's Hospital NICU. Purchase your tickets, come by the lanes on May 14th, eat pizza, do some raffles, get your face painted and don't forget to bowl for babies.

May Feature Family

2011-05-01T14:41:00.003-05:00

At the beginning of each month we will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU.

For this month's feature family, I thought this family would be perfect to share their NICU story, especially today as we would be seeing them at the March of Dimes Walk. The Case family was the 2010 March of Dimes Ambassadors and have been big supporters of the March of Dimes over the last three years. They also shared their story on CaringBridge back in October 2009 and Heidi is on the Children's St. Paul STEPs NICU Parent Committee. We are so lucky to have the Case family as supporters and friends of Ella's Halo.

Ellery Case

Written by Heidi Case

Former NICU Mommy

Two and a half years ago my daughter, Ellery was only given a 5% chance to survive. Her story begins when I was 30 weeks pregnant; doctors discovered my unborn daughter was critically ill with a rare and life-threatening condition called Fetal Hydrops. The mortality rate of Hydrops is up to 98%, as it's a condition where fluid overtakes a baby's body. Ellery's heart and lungs were surrounded by fluid, which prevented her lungs from fully developing. For three weeks we watched our baby continue to worsen through ultrasound, and our medical team finally said enough was enough when the fluid spread to Ellery's abdomen. At 33 weeks gestation, my very sick baby was born seven weeks early; she came out blue, limp and not a whimper of a cry as fluid surrounded her heart and lungs which made it impossible for her little lungs to inflate.

Neonatology staff at Children's worked on my daughter, and finally stabilized her after the longest 25 minutes of our lives. She then began her 28 day NICU stay. Within my daughter's first 24 hours, she developed a deadly lung condition called pulmonary hypertension, high blood pressure in the lungs. This condition doesn't allow the heart to push oxygen to the body. Ellery was put on nitric oxide to treat this condition, but my husband and I were told to expect the worst. We were called in multiple times in her first two days and told she had no reserves left, and she could leave us at any moment. I can't put into words what it's like watching your baby fight for her life - you really just go through the motions and go into survival mode for your child...and for yourself.

Ellery endured so many medical issues: congenital chylothorax, pulmonary hypertension, multiple pneumothorax, severe reflux (GERD), and jaundice. She required multiple blood transfusions, fresh frozen plasma, multiple chest tubes and sometimes hourly pokes for blood gas draws. It's exhausting just thinking about it and typing it now, I don't know how I lived it - it seems surreal now.

The "mommy guilt" of leaving one child to be with another was horrible. Leaving our then almost two year old son to be with Ellery made me cry and wishing God could put me in two places at once. I'll never forget leaving for the hospital one afternoon only to have my mom call me saying Wyatt was crying for me. It's one of the worst feelings in the world when both your babies need you.

The journey was long and painful, it took a toll on our marriage, our family, our son and our parents. The NICU stay was grueling, as we stayed with Ellery almost every night - fearing that would be the night something terrible would happen. Looking back, we were so incredibly fortunate to have a private NICU room where we were able to stay with our baby. And the staff was top notch, especially the doctor studying to be a neonatologist, Dr. Christina who followed Ellery; she holds a very special place in my heart! We're were so lucky to have such advanced medical staff caring for our child.

Today, Ellery has developmental delays; she not walking yet (but VERY close) and she has a speech delay. But she is a happy, healthy, beautiful two and a half year old stubborn little girl!! She loves to color, wear jewelry and steal her brother's Matchbox cars! She will start pre-school this fall and continues to do well in therapy.

We have Children's Hospital of St. Paul Staff and the March of Dimes to thank for Ellery's love of Barbies today, as it was their amazing work, and the March of Dimes' funding that made the research and development possible for nitric oxide! Without that therapy, my little girl would not be here. The March of Dimes has funded many other instrumental life-saving therapies that save thousands of preemies and sick babies every day! Their work is amazing, powerful and helps families be just that - a family.

Through the last two and a half years we've shared Ellery's story countless times and tried to put our difficult times to good. One way we give back is walking in the March of Dimes' March for Babies walk. We walk as team Ellery's Entourage in honor of Ellery, but also in honor and memory of all little ones born too soon or too sick. Thank you for following Ella's Halo's blog and for supporting their mission. We're also proud to support Ella's Halo and firmly believe in their mission and cause! We're proud to know Taryn and Ryan, and see the amazing work they do for others.

Thank you for allowing me to share Ellery's story - I hope her story brings you hope and inspiration that miracles can happen! If you're a family in the NICU now, may God bless you and see you through this time.

~Heidi Case - Wyatt and Ellery's mom

Walking Together

2011-04-27T20:26:00.000-05:00

A nonprofit that is obviously very near and dear to our hearts (well, besides Ella's Halo) is the March of Dimes. This weekend they are hosting their March for Babies Walk both in Minneapolis and St. Paul, MN. We are walking with our parents and the extended Krumwiede family.

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives.

As Team Krumwiede Kids, we are walking for many little ones in our family that have been born too early. Our family is walking together for stronger, healthier babies.....oh and little angels too!

Easter Blessings

2011-04-24T21:53:00.000-05:00

The Value of Volunteering

2011-04-20T11:46:00.000-05:00

My little girl has taught me many lessons and I actually find she is still teaching me things now even two years later. One thing that I didn't expect our daughter to teach me is that I love to volunteer.

It started first with simply donating to the hospital and starting Ella's Halo. I enjoy working on Ella's Halo, marketing our nonprofit, meeting contacts within the NICUs, and knowing that putting together blankets and books are going to help families. I love putting all of my extra time, my heart and soul into Ella's Halo because I know we are doing something that matters. Our first hand experience of the NICU helped us to realize that sometimes it is often the smallest things that mean the most. Receiving a cute little blanket to wrap your baby in for the first time while in the hospital seems like a small little detail but it can help bring a smile to a parent's face. And to me that is no little detail. I love that our little nonprofit can help other nonprofits like serving dinner at the Ronald McDonald House. Any way that Ella's Halo can give back and help families is inspiring to me.

I realized I need to give even more than just simply Ella's Halo. We went to Faith's Lodge and had a wonderful experience there. I felt that I needed to help give back to this wonderful cause as well and joined their Family Outreach Committee. This group of parents work to help spread the word about Faith's Lodge. We also put together a Holiday Tribute event, give new ideas about how we can help families attend Faith's Lodge and help spread awareness about this organization. I knew that I loved to help and be part of this nonprofit as well.

I also wanted to reach out even more and being more active in the hospital communities we were helping through Ella's Halo. I became a member of the Parent Advisory Board for Amplatz Children's Hospital and love that I get to help a wide range of families in the hospital with their children and not just the NICUs only. However, I did become a member of the Parent to Parent group in the Amplatz NICU. Volunteering at open houses for the new hospital, helping with pizza parties at the NICU for families, or just simply giving feedback about how to make things easier for kids and parents are just a few of the things that I now love to be a part of.

Make a Wish is another organization that I wanted to be a part of. I want to see kids with smiles and have happy moments when faced with scary and uncertain medical conditions. I am taking part in a training session this June to become a wish granter volunteer and excited to see the big smiles on the faces of kids. I am excited for yet another opportunity to give back and help kids and families.

Through volunteering at hospital functions, severing dinner at the Ronald McDonald House for Ella's Halo or becoming a wish granter for Make a Wish, I have finally found something I am passionate about and can do alongside another passion of mine Ella's Halo! Volunteering is something I didn't know was missing from my life until I started becoming active in helping others.

Amazing how a one pound baby can teach us so much about life, learning and love. Thank you Ella for teaching me that there is more of me to give.

Where Dreams Come True

2011-04-13T12:43:00.002-05:00

{via here}

When I was a little girl, there was just something magical about Mickey Mouse and all of his friends. I was lucky enough as a child to get to go to Walt Disney World and see the magic first hand. And this year for our Ella's Halo Bowling for Babies on May 14th, you could have the chance to win a trip to Walt Disney World and see the magic for yourself!

Walt Disney World has donated 4 one day passes to any of their Disney World Theme Parks plus Southwest has kindly donated 2 free airline tickets which will be included in our Disney World gift pack.

Not only do we have tickets to Walt Disney Word, we have some fun prizes for adults too. There are 2 three day passes to We Fest Country Music Festival in Detroit Lakes, Minnesota up for grabs too. How fitting that this year their theme is Heaven in 2011! You could go see all of your friends like Sugarland, Brad Paisley and Rascal Flatts at this country fest in August.

We are also excited for our Mall of America gift pack, American Girl, Lia Sophia jewelry, autographed Minnesota Wild hockey puck and gift set, Dick's Sporting Goods gift card, Twins tickets, and Guthrie tickets. And, of course there are golf packages, hotels, wine tasting, casino nights and restaurant gift cards too!

We have so many fun prizes this year and we are gearing up for a fun afternoon of bowling! Remember to purchase your tickets for Bowling for Babies before April 15th (FRIDAY) to be entered into a special early bird drawing. Click here to get your tickets!

And I found the below quote and think it is perfect! I am so glad our little girl left behind a dream in us to help others, because Ella's Halo is doing exactly that! See you on May 14th!

{via here}

A Birthday Wish

2011-04-05T12:43:00.000-05:00

I can't believe we celebrated Ella's 2nd birthday. Sometimes it feels like it was just yesterday and I was kissing her sweet little cheeks and other times it feels like a million years ago. And no matter how many years will pass, there is always something about her birthday that brings pain and happiness together.

Leading up to her birthday was a little tough. My heart just gets so heavy and I can't think about anything else but how much I miss my little girl. However, we are surrounded by such good people who continue to remember our baby girl's birthday. We received flowers, cards, emails, and donations all in her memory. It helped to lift my spirits a little on Friday.

Friday morning we started bright and early with our Ella's Halo donations. We felt it was a fitting day to do donations on her birthday. We went to Amplatz, Children's Minneapolis and Children's St. Paul. Seeing all of our new friends and contacts at the NICUs was such a nice way to start off Ella's birthday. We know that many families and babies received some love from Ella's Halo on our baby's day.

Next we stopped at home so I could make cute little pink cupcakes. It is a birthday after all and my sweet tooth needed some birthday cake! Afterwards, we went to look for a birthday gift for our little girl's garden and went for lunch. It was nice to take our time shopping and eating and spending time together.

It turned out to be a sunny and beautiful afternoon so we went to the local florist shop where we bought Ella's memorial flowers. We purchased two pink little balloons from the lady that helped us two years ago. She was a sweet lady who also lost a baby many years ago and she remembered us. How sweet is that!

We went over to a nearby lake and since it has been so cold here in Minnesota the lake is still frozen, so we strolled out into the middle of the lake and released to pink balloons up into the bright blue sky. We watched them go all the way up and those two little balloons stayed side by side. It was just beautiful. And this year Ella didn't pop either balloon!

And of course before we fell asleep, a very sweet daddy sang happy birthday to his precious little angel. I couldn't have asked for a better birthday wish for our little girl.

April Feature Family

2011-04-01T09:31:00.000-05:00

Welcome to our first Ella's Halo Feature Family. At the beginning of each month we will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU.

For our first month, I thought it would be fitting to have someone who had not only one baby but two in the NICU at the same time. And she is on our board of directors for Ella's Halo! These two are wonderful parents to their twins and are huge supporters in helping NICUs. I am proud to introduce our April Feature Family, Tracy and Brian Krumwiede.

Kellen and Shea Krumwiede

Written by Tracy Krumwiede

Former NICU Mommy

It's an odd thing living in a hospital. The bed rest experience, in retrospect, was really not that bad. Laying in bed for almost two straight months in the hospital comes with its perks. Watching the entire series of Sex and the City, getting served meals in bed three times a day, and unlimited heated blankets to name a few. All of these and more - distractions. If I thought about the possibility of my babies being born within the time frame the doctors anticipated (within 24 hours of my 22-week ruptured membranes - not a viable gestation) I'd go crazy. So I waited. I hoped and prayed every day that I could keep them in there just one more day. And every day God answered our prayers. Every day for 48 days. Then, on November 28, 2005 we were thrust into a new world that we could never have imagined. The NICU. No more laying in bed, being served meals daily, and watching TV shows to pass the time. Oh, and no more heated blankets either. When our babies were born, we didn't walk out the front door with a cart full of fragrant flowers, pink and blue balloons, and footprints to put in baby books. We walked from the Maternity Ward at United Hospital down the hall to the NICU at Children's Hospital - and into a world that is unimaginable to those who haven't lived there - the Neonatal Intensive Care Unit.

Our son, Kellen, and daughter, Shea, were born on November 28, 2005 and spent 54 days in the NICU. It's such a cliche to say that it's like a rollercoaster, but let me tell you - it's like a rollercoaster. You just never know what the day will be like. You are so worried most of the time that your emotions are overwhelming. You celebrate poop and you cry over spilled milk. And by "cry" I mean "make a scene so unruly that your nurse thinks you've gone off the deep end and may never return." You file away hundreds of blue-tinted pictures because your babies are under billi-lights and who knows how long that'll last. You get excited when they take out a tube so you can actually see their little faces. You put on a brave face and try to deliver positive updates on your CaringBridge web site.

Kellen in the NICU

Every day for 54 days my husband, Brian, would drive me 20 miles to the hospital in the morning (I had a c-section so couldn't drive), drive 20 miles back to work, drive 20 miles back to the hospital after work, stay for a few hours with the babies, then drive 20 miles back home for the night. We left our house at 6:00 every morning and didn't return until at least 10:00. Then I had to get up and pump every two and a half hours and be ready to do it all over again the next day. It was exhausting to say the least. And that's just the physical exhaustion. The mental and emotional exhaustion were even worse.

But... you do what you have to do. You do the best you can as new parents being thrust into such an uncertain world where every day is a mystery and the highest of highs are oftentimes followed immediately by the lowest of lows - and vice versa. You learn to adapt and try to stay positive. You're in your own world and you have no idea what's going on around you - and that's okay. Everyone's NICU experience is a little different, although there are common themes running through all of them - the rollercoaster and bad cafeteria food to name a few. Here are a few of my highs and lows...

10 things I hate about the NICU:

1. Not being able to hold my babies until the doctors and nurses said it was safe.

2. Watching moms of full-term babies going by the NICU doors with their balloon bouquets and their babies in their arms.

3. Cafeteria food. For every meal.

4. Not knowing what will happen.

5. Worrying about germs.

6. Being away from my babies at night.

7. IV's in their heads.

8. Surgery.

9. Foam hand sanitizer.

10. Not all babies come home like mine did.

10 things I love about the NICU:

1. They saved my babies.

2. Primary nurses - thank you Deb, Charity, Barbara, and Darlene :).

3. Visitors.

4. Santa still comes - even to the NICU.

5. Singing Christmas carols to my babies.

6. Getting special surprises from donors (books, trinkets, sporting event tickets, etc.)

7. The ice machine and little round ice chunks - yum.

8. My nurse Deb helping me put both babies (still hooked up to tubes, etc.) inside their Christmas stockings and taking pictures.

9. Decorating their rooms however we wanted.

10. Surfactant. (Thanks March of Dimes)

In the end, both Kellen and Shea, despite their very early arrival and scary NICU moments, came home. On January 20, 2006, we brought our babies home and they have amazed us on a daily basis ever since. Thanks to the doctors, nurses, St. Paul Children's NICU, technology, and great organizations like the March of Dimes, Kellen and Shea have no long-term health issues related to their prematurity. We are so so blessed and grateful for their health and take so much pride in watching them learn and grow each and every day. They start Kindergarten in the fall and it's times like those when I'll look back on those scary NICU days - which seem like such a blur - and remember the miracles they are and how lucky we are to have them in our lives.

Shea in the NICU

Today I am the chairperson of the board for Ella's Halo. I am so proud to be part of such an amazing organization that helps babies and their families in the NICU every single day. As a former NICU family, we know how important and special the seemingly "little things" can be, and how special touches like the ones Ella's Halo provides can bring so much comfort in a time of so much uncertainty. Thank you to all of our friends and family who have helped us grow Ella's Halo into an organization that we are all so proud of and lucky to be a part of, and a special thank you to those of you who continue to support Ella's Halo in our efforts to provide some much-needed comfort to all the babies and families we serve.

And to any current NICU families who might read this - hang in there, stay strong, and may God bless all your little miracles.

Bowling, Birthdays and Babies

2011-03-30T15:06:00.000-05:00

Well it has been another crazy and hectic week for Ella's Halo. We are creeping up on our event B4B on May 14th. Lots of things to do yet before the big day. I keep thinking I have time but as we get closer to the one month mark the more things I remember we have to do yet.

We also celebrated Ella's birthday. I will do a post later on our special day of donating and remembering our little girl. Ella's Halo did three donations at 3 separate hospitals this past Friday in honor of Ella's special day and it was just so much fun. This is why we continue to do our events, so we can raise money and donations to be able to give back to the NICUs. It was such a wonderful day.

We are also looking for families who would like to include their baby's photo in the NICU in a little video we are going to play at our bowling event. We would like to include other families and show our bowling guests what NICU life is like. Each family has a different story about their NICU journey and each baby has a different experience. We would like to include other families who know this roller coaster all too well. So if you are interested in having your little NICU baby included in our video with your child's name, please email me at info@ellashalo.com. We would be so honored to have your child featured at our Bowling for Babies event. Seeing their little faces while in the hospital will be a great reminder to everyone about why we are raising money, to help babies and families in the NICU!

Ella's Halo had a planning board meeting last week as well. We are working on putting together silent auction packages and new raffle ideas. This year we will have a face painter for the kids in addition to little prizes for them as well. We are all getting very exciting for our favorite family friendly event and hope you are too. If you haven't purchased your tickets go here to register.

We have some awesome lane sponsors joining this year's event as well. Thank you to Paradigm, Wedding Designs and Rentals, Jenny and Michael Reyes, Natural Nutrients, and Andy and Chelsea Marthaler for being lane sponsors. If you are interested in being a lane sponsor or event sponsor, email us at info@ellashalo.com. The costs for an event sponsorship is $250 and lane sponsorship is $100. Contact us for more details.

And this year if you purchase your Bowling for Babies tickets by April 15th you will be registered into a special drawing. So hurry and order your tickets so your name will be included in the drawing! Tickets for adults are $20 and kids 12 and under are $10.

Also we have something special for you this Friday. A new feature we will be hosting here on our Ella's Halo blog! So come back on April 1st to check us out!

Happy 2nd Birthday

2011-03-25T08:46:00.000-05:00

{image from here}

Happy 2nd Birthday to our sweet baby girl. Two years ago you came into our lives and changed us forever.

Happy Birthday Ella!
We love you and miss you everyday.

T-W-O

2011-03-22T09:53:00.000-05:00

Two must be the theme for this week. We are less than two months away from our 2nd Annual Bowling for Babies event on May 14th and our little girl's 2nd birthday is on Friday. Two is definitely on our minds.

1. We are preparing for our 2nd Bowling for Babies event. So many fun things are being planned and we are looking forward to raising even more money this year to help NICUs. I can't believe our 2nd bowling event will be here in less than two months. Time flies when you are having fun helping others!

We currently have 2 wonderful sponsors for our event. River's Run and Ride Rally and Brian & Laura Bredenberg are our current event sponsors. As always if you or your company are interested in being an event sponsor or a lane sponsor, please feel free to email us at info@ellashalo.com for more information. Thank you to River's Run and Ride Rally and Brian & Laura Bredenberg for your support for Ella's Halo Bowling for Babies 2011 Event.

We have received so many awesome donations for our raffles and silent auction this year too. It is so fun to see all of the fun and different prizes we will be able to give to participants at this year's event. If you are interested in promoting your business, etsy shop or your creative side, feel free contact us on how you can donate items to Ella's Halo. All donations are tax deductible and help us raise money to help babies in the NICU. We have golf vacations, wine tasting, tickets to We-Fest and the Guthrie, autographed photos, a gift pack to the Mall of America and so much more. Don't forget to click here to purchase your tickets for our event.

2. Ella's 2nd birthday is March 25th. I definitely have a heavy heart this week but am also looking forward to the fun day we have planned. Ryan and I will be doing three donation drop offs at the 3 Level III NICUs here in the Twin Cities area. We have over 100 bags for Children's St. Paul, 60 cameras and a couple of CD players for Children's Minneapolis, and 75 blankets, 20 books and 25 hats for Amplatz Children's Hospital. It will be a nice way to give back to the NICUs on our little angel's birthday.

Ryan and I are planning to spend the day together and releasing 2 pink little balloons up to heaven to help our little girl celebrate. I really can't believe it has already been two years. It makes me sad to think of the things we are missing out on, things we don't get to do with our two year old little girl. But it brings me some comfort knowing that other babies will be receiving the love from Ella's Halo on March 25th too.

Feeling Lucky

2011-03-17T11:13:00.000-05:00

Most people think of green beer, rainbows and leprechauns on March 17th. So I decided today I would reflect on something different.....on just how lucky I am. Maybe it is the warm weather and spring being right around the corner but I am feeling lucky for so many reasons today.

{Image from here}

I am oh so lucky to have a wonderful husband and lucky he just happens to be Irish!
I am lucky to be part of Ella's Halo. I have to sometimes pinch myself to believe this is all true.
I am lucky because I have a little girl who is my own personal Saint watching over me.
I am lucky to be living in Minnesota. Lucky today's beautiful weather will bring green grass.
I am lucky to have lots of dreams. They give me hope and let me wish on rainbows.
I am lucky not to have a pot of gold but a heart full of love.

I hope that today you are all feeling as lucky as I am and may the luck of the Irish be yours. Happy St. Patrick's Day.

Happy Day

2011-03-11T14:32:00.001-06:00

Today is a happy day .........

{source}

Today my husband and Ella's Daddy turns 30. Happy Birthday Ryan! You make every day a happy day!

Time Flies

2011-03-10T14:50:00.000-06:00

Wow, it has been a few days since I last updated our blog. You don't realize how fast time goes until you take a quick vacation, catch a cold and try to get back into the swing of work – oh, and try to plan an Ella's Halo event.

Ryan and I took a nice mini-vacation to Nashville, Tennessee, to see some good friends. We had such a fun time visiting, and we can't wait to go back. We love country music, being country kids at heart, so it was fun to get into the small bars and hear some good old country music.

However, I did catch a cold, and I think Ryan might be getting it too. We are trying to get better before this weekend, we have another BIG birthday to celebrate. Ryan turns 30 tomorrow and I am excited for the weekend I have planned. I can't even believe we are a couple of old married 30-year olds! Ha! Time sure does fly by when you are having fun.

In between work and meetings, we are still finalizing details for the B4B event in May. We are getting so many fun and unique donations this year. And speaking of country music, we received 2 three-day passes to We-Fest! Yee-ha that is an awesome prize. We also have golf packages, hotel rooms, theater tickets, wine tasting, Mall of America gift pack and so much more. May 14th is going to be such a fun day.

But first up we have another birthday to celebrate on March 25th. Our little Ella will be two years old. Wow, time sure does fly by. I can't even imagine how crazy I would be planning a party for her if she were here with us. I am sure pink and princesses would be everywhere. I can't believe how fast these last two years have gone, and yet how they have taken so long too. I don't even know if that makes any sense, but it truly is the only way I can describe it.

Well, I am back into the swing of things and have lots of things coming up for Ella's Halo. Some exciting things to talk about, some exciting things for Bowling for Babies, and some exciting things to do. So I better get going - time flies and it’ll be here before I know it!

Soulmate

2011-02-25T09:17:00.000-06:00

Today is our 5 year anniversary. I still can tell him everything, we can be together 24/7 and never run out of things to talk about or do, and even shovling the driveway together (for the 10th blizzard this year) is fun. I couldn't imagine my life without him. He is my rock. He is the guy who gives me a hug when I am about to tear up because I miss a little girl, he is the only person in the room who gets my jokes and laughs, he is the man who loves me even when I wear two different pairs of shoes (for an entire day), he can look at me and know exactly what I am thinking, he comes outside in the cold to help me back my car out of the garage, and he's the one who gives me a kiss every night before bed. But most of all he is my sweet baby girl's daddy!

Happy Anniversary to my wonderful husband. You are and always will be my soulmate!

{Quote photo came from here.}

Little Obsessions

2011-02-23T21:33:00.000-06:00

I have a new little hobby or you could say obsession..........

I have been having so much fun making these cute little hats and I can't wait to donate them to the NICU. I know that when we were in the hospital with Ella, these sweet handmade gifts were so special. Especially now since I don't have many things of hers, these knitted hats are a few of my small treasures.

It is so fun to have a new little hobby that falls in line with my bigger hobby....Ella's Halo. Oh little obsessions.

Random Thoughts

2011-02-16T14:40:00.000-06:00

I sometimes have to step back and look at our life. I know that I am a huge planner and that I tend to overbook our life. I keep our schedule booked with dinners with friends, happy hours with co-workers, meetings for Ella's Halo, volunteering at the hospitals and spending time with family. There isn't always much room for rest and relaxation in our life. I don't know if it is my way of trying to keep busy instead of letting life happen or if I just naturally like to be social. But thankfully I have a good husband that reminds me to breath and just let things happen. I definitely need those reminders daily.

Ryan and I met with a group of parents called NEXT at Children's Hospital in Minneapolis. This is a group of parents who have all had a child in the NICU, and come together as a committee. Ryan and I met with them to talk about Ella's Halo, to see if there are ways we can help them, and to see what needs their NICU has that could benefit families and babies. It is fun to meet new people and spread the word about Ella's Halo with those who really understand what life in the NICU is like. We look forward to working with the parents and staff at the Minneapolis Children’s NICU in the future.

We have also been gearing up for Ella's Halo Bowling for Babies. May 14th is fast approaching and this year we started a little early with our planning. We are already receiving exciting donations for our raffles and silent auction items. Gift cards, tickets and wine tasting are all just some of the items up for grabs at this year’s event. We are also working on getting sponsorships for our event. If you know of anyone who would be interested in being a sponsor, just send us an email.

Over the next month, we have a lot of fun things to celebrate. Valentine's Day, our 5 year anniversary, Ryan turning 30, and Ella's 2nd birthday. Of course, both of Ella's Grandmas and one of her Grandpas also have a birthday in the next month. I can't believe we have been married for five years and that our little girl will be two. Time sure does fly by, probably because I have been over planning!

And don't forget our Borders "Benefit Days". Ella's Halo is the nonprofit on February 19-20 for the Minnetonka store's Benefit Days. Just bring the voucher below with you into the Minnetonka store ( Minnetonka - 1501 Plymouth Road, Minnetonka, MN 55305) and each time a voucher is used a portion of the sale will be donated to Ella's Halo.

***Print this voucher off and bring it to the Minnetonka Borders February 19-20! Help us raise money to help babies in the NICU.

Love

2011-02-14T08:51:00.000-06:00

I just love......

dark chocolate,

a good book,

sunsets at the lake,

a warm cup of coffee,

twinkling stars,

my sweet angel,

and him.

Happy Valentine's Day. May you enjoy the things you just love!

{valentine images from here}

Borders Benefit Days

2011-02-11T13:30:00.001-06:00

Borders "Benefit Days" is a fundraising event hosted by the Borders Bookstore. Ella's Halo is the nonprofit on February 19-20 for the Minnetonka store's Benefit Days. By using the voucher below you can bring it into the Minnetonka store and each time a voucher is used a portion of the sale will be donated to Ella's Halo.

Come out to Borders Minnetonka store and buy books to help babies.

For information on location and hours click the link below:

Minnetonka - 1501 Plymouth Road, Minnetonka, MN 55305

Print this voucher off and bring it to the Minnetonka Borders February 19-20! Help us to raise money to help babies in the NICU.

Update

2011-02-05T16:23:00.000-06:00

May 14th, 2011, is Ella's Halo Bowling for Babies event at Park Tavern in St. Louis Park. We are working to get donations and working on all of the details. I am really excited for this year's event and all of the fun ideas we are planning. The bowling event is currently slated for 2:00-5:00 p.m. It will be a fun filled family afternoon with music, bowling and pizza. More details about where to purchase your tickets will be available later this month.

If you or someone you know would like to be a sponsor for Ella's Halo Bowling for Babies 2nd Annual Event, please contact us at info@ellashalo.com. We are also taking donations for our raffle and silent auction. If you have items or services you would like to donate, please let us a know. All donations are fully tax deductible, we are a 501(c)3 nonprofit organization.

Thank you to the Minnesota Medical Foundation for giving our board of directors a tour of the new University of Minnesota Amplatz Children's Hospital and the newly remodeled NICU. We enjoyed our tour and it was nice to see the new facility for families and children. I hardly even recognized the NICU we spent 83 days and nights in. We were able to take the tour with two doctors that work in the NICU. It was really fun to see one of Ella's doctors again, and to spend an afternoon with him on the tour. It brings a smile to my face when her doctors recognize us and remember our baby girl. Those doctors and nurses not only touched us, but maybe Ella touched them too.

Also this past week we were a featured nonprofit here on The Blogunteer Blog. It is fun to be featured on other organizations' blogs and it helps us continue to keep spreading the word about Ella's Halo. The Blogunteer is a blog about volunteerism and highlighting organizations like Ella's Halo who are making a difference.

As always, we are constantly thinking of new ideas and ways to help spread the word about Ella's Halo. We are always open to your ideas and thoughts, so please share your comments, feedback and ideas in the comments section below, or email us at info@ellashalo.com, or write us on our facebook page.

Baby Fever

2011-01-31T14:09:00.007-06:00

January has been the month of babies. We have had so many sweet friends have their first or second little tike. We also have had some deserving babyloss mommas find out they are having another baby. It just seems like babies are everywhere right now. I am starting to get baby fever.

Ryan and I decided to take a little road trip and go visit two of our friends who both just had their second baby. It was so fun and just what the doctor ordered to be with our friends and their sweet little families.

Our North Dakota road trip started out to visit my friend Leslie and her hubby Dustin. They used to live in Minneapolis by us but moved back to ND this past summer. They have a little girl who we have gotten the pleasure of watching grow up and now they just added a handsome little boy to their family at the beginning of January. It was fun to spend the weekend with them, holding their new baby boy, playing with their little girl and hanging out after the kids went to bed. Leslie is such a good mommy and I hope when I have another baby that I am as much of a pro as she is!

On our way back to Minnesota, we made a pit stop in ND at another friend's who just had a sweet baby girl. She is such a little peanut and it was fun seeing her big brother too. Autum and Nick just had their little girl at the beginning of January and I am sure she will be a little girlie girl just like her momma!

It is so fun to see our friends and watch how their families grow. I can't wait until our kids will all be playing together. We had such a fun weekend. Lots of catching up with friends, puzzle playing and baby holding. It is hard not to catch the baby fever!

Angels on Earth

2011-01-26T10:48:00.000-06:00

{image by http://smallbirdstudio.blogspot.com/}

Losing a child can strengthen relationships. It never seizes to amaze me how wonderful and supportive our friends have been over the last two years. I know it is so hard for them to know how to help us, how to comfort us and how to be the friends I need sometimes. However, this experience has helped me realize the true friends that have been there for me when I really did need them the most. I only hope that I am half of the friend to them as they have been to me. My friends are my angels here on earth that give me strength every day.

As time passes on, I can see in the eyes of others that bringing up Ella is starting to be a strange topic for discussion. This was at first hard for me to take. I wanted to talk about her, I do have memories of her, she is part of us and always will be, and she changed me to my very core. Why wouldn't I talk about her? I have found comfort in knowing that I might not be able to tell every Ella story to some people but I am very lucky to have such good friends who will listen and listen with interest even now two years later. And even sometimes it is those friends who will bring Ella up in the middle of our conversation or say simple things like when you have another little baby. Those things mean the world to me and always makes my heart so full with love not only for Ella but for those sweet friends that truly understand how I have changed. It is the friend that knew I needed a girls weekend, a card just because it was Tuesday, a hug when I see a daddy with his little girl, a glass of wine to help unwind, a call on the phone to just chat and a friend who just knows I need a good cry. I can't even describe how these friends have touched my heart and mean so much to me, to us. These friends are our angels.

Losing a child can hurt relationships too. Some people just don't understand the depths of our grief or they themselves are too scared. I know that there are friends who simply can't reach out to us because it is something unknown to them. They don't know what to say, how to act or what to do so they instead do nothing. And I may have been selfish focusing on me and Ryan and trying to get through the first year without Ella that I didn't put time or effort into these relationships either. I guess it is just what happens in life.

Losing a child can also build new relationships. I never thought we would be part of the babyloss community or even the NICU community. They are friends I am so thankful for but really wish I never met because meeting them means they have had to go through the same journey of losing a child or having a baby in the hospital like we have. These friends are like no other. Sometimes they can see a look in your eye or a smile on your face and know exactly what you are thinking or what you are feeling. They understand our grief without having to explain. I know that no matter how life changes in the next few years, we will always have this network of friends and support, this network of angels here on earth.

As I continue to heal, I am even more thankful for the friendships that have grown during my time of need. I really do have some of the best people that care about me, my future and my baby Ella. You know who you are....so thank you from the bottom of my heart for your friendship it means the world to me. Every day the angels here on earth are helping me to heal and lifting me back to my feet. We are so blessed with such wonderful friends.

Winter Blues

2011-01-20T12:38:00.003-06:00

Maybe I am getting a case of the winter blues. The last two weeks I have sort of felt out of it and not wanting to do much. I always have so many ideas running through my head especially about Ella's Halo but I just can't seem to work up the motivation to do them. I was so excited to start the new year, but now with the cold temps and endless snow storms, I sort of feel like blahhhh.

I looked at my calendar today and I have decided it is time to start planning and get moving again. Over the next few months we have lots to do and now is the best time to get started and get rid of these winter blues.

In February, Ryan and I, and our board members are getting a tour of the new University of Minnesota Amplatz Children's Hospital. We are excited to see this new hospital and will also be stopping by the NICU to get a quick tour, now that it has been remodeled. This hospital will always have a special place in our hearts, as we spent 83 days and nights with our little girl there.

We are also having a Borders Benefit Days at the Minnetonka Borders Bookstore. A percentage of net sales raised will be donated to Ella's Halo. February 19 - 20 will be Ella's Halo Benefit Days at Borders and we will be providing vouchers so you can use the coupon at the Minnetonka store or online to buy books. Buy books and help babies.

Also, mark your calendars for Ella's Halo Bowling for Babies! We have the 2nd annual event scheduled for May 14th at Park Tavern. We hope to raise even more money this year to continue helping NICUs. We are working on getting letters together for prizes and for sponsors. If you are interested in donating items or would like to be a sponsor for this year's event, email me at info@ellashalo.com.

So, goodbye winter blues and hello to a busy next couple of months!

Her Name

2011-01-16T13:24:00.000-06:00

Over the holidays.......

just seeing her name.......

made me smile.

Just Different

2011-01-09T10:32:00.000-06:00

As we rang in the 2011 New Year, things just felt different. This year I am more hopeful for the future, more at peace with grief and more certain in our journey. I am looking forward to the new year and to whatever life throws my way.

Letting go of 2009 seemed so hard. That was the year my life changed. It was the best and worst year. Looking ahead to 2010 seemed like an up hill battle and I was hopeful but gripped with grief and uncertainty. I didn't know how two people could create a nonprofit and be able to live out our promise to Ella through Ella's Halo. I didn't know the journey Ryan and I would decide to take to continue adding to our family. I didn't even know how I would make it a whole year without Ella. 2009 was Ella's year and it was hard to say goodbye.

Leaving 2010 behind, however, is different. I jumped into 2011 excited, not to leave 2010 behind but, to all of the promise that I know 2011 has in store. 2010 turned out to be an exciting year for Ella's Halo. Our nonprofit became more than I could have ever dreamed it would in just one short year. We held two successful events for Ella's Halo in 2010 which I never imaged would have happened this time last year. And yes we are still always burdened with grief and it does still catch me off-guard but I have come to embrace that as a part of who we are. Grief is something I will always have and 2010 helped me be okay with that.

So here is to 2011. We are looking forward to expanding our Ella's Halo efforts and making our nonprofit even more than what it already is. We hope to come up with even more ways to provide comforts to families in the NICU. We want to continue to give back to nonprofits that have touched our lives since Ella. We even want to think about maybe adding to our little family someday too. In the next year, we want to continue to honor our sweet little girl's life in the things we do every day. We want to keep 2011 wide open for all of the possibilities that we may not even have thought of. That is what gives me the hope for this new year.

It amazes me how different one year can be. One year I don't want to let go, and the next year I am ready to jump in feet first. Either way 2011 is here to stay...for at least the next 12 months!

Year in Review

2011-01-04T21:12:00.000-06:00

2010 has been an exciting year for Ella's Halo. I can't wait for 2011! Here is the year of 2010 in review.

*January: Opened a bank account for Ella's Halo and deposited our first donation

*February: Officially became a 501(c) 3 Nonprofit

*March: Ella's First Birthday

*April: Taryn is interviewed by Fox 9 News about donating breast milk to families in the NICU

*May: Ella's Halo 1st event: Bowling for Babies raised over $8,000

*June: Ella stars in a music video by Rocket Club called One More Day

*July: Ella's Halo sets up Ella Jo Krumwiede NICU Fund at Amplatz Children's Hospital

*August: Ella's Halo is the charity for Reside's Cocktails for a Cause and raised over $1,000

*September: Ella's Halo Board of Directors serves dinner at the Ronald McDonald House

*October: Ella's Halo 2nd event: Strides for NICUs in Perham, MN raises $3,000 and Ryan

is on the radio station WDAY 970 AM in Fargo talking about Ella's Halo

*November: Ella's Halo is featured on a couple of websites including LaunchHER

*December: Ella's Halo donates new welcome bags to Children's St. Paul for all new admits in 2011

It has been a busy year and I know 2011 will be even busier! I sometimes forget all of the wonderful things we do to help others and it is nice to reflect on the past year but it is also exciting to look ahead too.

Happy New Year from Ella's Halo.

Welcome Bags

2010-12-28T17:37:00.001-06:00

On December 20th, Ryan and I went to Children's Hospital in St. Paul and donated our first round of welcome bags for families who are admitted into the NICU. This has been an idea of Ella's Halo for a long time. Back this fall I meet with the parent committee called STEPs and they provided feeback and ideas about our welcome bags. We decided that this was something we could do and started working on getting prices and vendors to help support our Ella's Halo Welcome Bags.

We dropped off 150 bags which included a reusable bag, reusable water bottle, camera, notebooks, pens, and a toiletry kit with Kleenex, shampoo, conditioner, soap, toothbrush, toothpaste, deodorant and a comb. These are items we wished we had or needed during those first few days we spent in the NICU with Ella. We still have 150 more bags to bring to them. Our hope is to be able to provide bags for the 2011 year to each new admit in Children's St. Paul's NICU.

We even got to present a bag to a new mother whose baby was just admitted into the NICU. I saw in her eyes the same feelings I remember all too well. The shock of what just happened, the excitement about a new baby and also feeling terrified of the unknown NICU world. I hope that this family will have a few comforts from our welcome bag to help make their stay a little easier. We hope these bags bring a little peace of mind to these families who are starting their journeys on the NICU rollercoaster.

Thank you to Mike and Annie for helping us get these bags to families in the NICU. We are lucky to have met some members from the hospital who are supportive of Ella's Halo. We know that working with them will help us be able to accomplish our mission of providing comforts of home to families in the NICU. Even if it was in a middle of a snow storm!

It was an amazing afternoon and perfect timing with the holidays. We donated in memory of a little angel and are looking forward to an exciting new year in 2011 with everything that Ella's Halo will do to help families.

Happy Holidays

2010-12-24T13:26:00.004-06:00

'Tis the Season

2010-12-16T10:20:00.000-06:00

Well, the holidays are fast approaching. We have been busy rushing around to get everything done before next week. No matter how hard I try, I just never really ever feel ready for it to be Christmas so soon...especially these last two years. I am scrambling to get cookies made for cookie exchanges, finding the perfect gifts for family and friends, getting my Christmas cards sent out (which I just ordered last night), holiday parties with friends, wrapping all of our presents to put under the tree, picking the perfect ornament for an ornament exchange and making sure I have my three stockings hung for Santa. Sometimes it is easy to get lost in all of the tinsel, sprinkles and wrapping paper. 'Tis the Season!

However, amidst the holiday rush, we do take time to remember others who might not be as lucky. We remember those who might not be rushing around with holiday cheer, but in a hospital with their sick child or grieving the loss of their little baby. We know all too well that gifts, cookies and Santa are not even on some people's minds these next two weeks. In between our trips to the mall and holiday parties with friends, we have been working on putting together our welcome bags for families entering the NICU this next year. On Monday, we will be donating bags to Children's in St. Paul and also blankets and books for gifts. 'Tis the season...'Tis the season to give back.

We are also going to take part in Faith's Lodge Holiday Tribute this Sunday for children who are not here to spend the holidays with us. This time of year always breaks my heart a little. I know my little girl is missing and for whatever reason Christmas makes it a little more painful that Ella is not here in my arms. But, she is always on our minds and in our hearts no matter what time of year it is but she will be even more so on the 25th. 'Tis the season to remember our loved ones who are not here and to be thankful they were in our lives.

Christmas isn't always about cookies, gifts and jingle bells. Sometimes it is reflecting on how you can help others. Sometimes it is remembering those who aren't here. Sometimes it is just being blessed to have so much to be grateful for in your life. I just need to be sometimes reminded that the Christmas spirit is more than putting up my tree and singing Frosty the Snowman. I need to slow down and enjoy this time of year a little more. So 'tis the season for all that Christmas can offer.

Have Yourself A Merry Little Christmas

2010-12-09T11:59:00.000-06:00

It is lightly snowing outside, the air is chill and our house is a glow with Christmas lights. It is hard to believe that Christmas will be here in 2 weeks. This time of year always makes my heart a little heavier. Missing my little girl and wondering what she would have wanted for Christmas in her stocking or wondering if she would burst in to tears on Santa's lap because she is scared of Jolly St. Nick.

Have yourself a merry little Christmas.

Let your heart be light,

From now on our troubles

Will be out of sight.

However, there are wonderful programs for bereaved families to remember little ones that remind us that Ella is here with us. There are also kind friends and family that remember with us so that we know Ella's life won't be forgotten and that she is missed in all of the holiday cheer.

Have yourself a merry little Christmas,

Make the Yule-tide gay,

From now on our troubles

Will be miles away.

Just this past weekend a friend of ours got married. For their dollar dance they donated all of the money to Ella's Halo. It brought tears to my eyes and still does that we are blessed to have good friends who will always remember a little girl that was only here for a brief time, even a year and half later.

Here we are as in olden days,

Happy golden days of yore,

Faithful friends who are dear to us

Gather near to us once more.

We also got to do a few of our "new" family Christmas traditions. Our parents and Ryan and I went out to the cemetery and brought Ella a Christmas tree with pink ribbons. The Grandmas spoiled her and put the ribbons on her freshly cut tree. I know she was smiling down on us that afternoon. We also attended the Angel of Hope ceremony on December 6th in Perham. Ella's stone is there and it is a beautiful way to gather with other families who are missing their angels. I said Ella's name and placed a white flower next to the angel statue as did Ella's Grandmas and Great Aunt Diane. We sang Silent Night in candle light together as a group of bereaved families. Faith's Lodge is also having a Holiday Tribute for our little angels on December 19th at the Woman's Club in Minneapolis from 3-5pm. We are looking forward to another new tradition of remember Ella this holiday season.

Through the years

We all will be together

If the Fates allow,

Hang a shining star

On the highest bough,

And have yourself

A merry little Christmas now.

Christmas might be a little easier this year, but it will never be the same without Ella. I know that she may not be here to hang her stocking or help us decorate the Christmas tree, but I do know she is with us and always will be. We know that our sadness will never go away but being able to remember her and having others remember her too eases that pain.

This holiday season we know the pain that other families are facing, a first holiday without their child. Our troubles might not always be far away or even out of sight, but just like the song says, "through the years we will be together", and that is all we have to hold on to. The hope that our angels are always with us.

Nonprofits

2010-11-30T09:51:00.000-06:00

With the passing of Thanksgiving, I realized how thankful I am for many things in my life. One thing that is new to my list is that I am thankful for the work of nonprofits. I never knew how much time, giving of talents, and love was put into making a successful nonprofit. Here are a few nonprofits that have touched me this year and I am so thankful they are helping others in our area.

The Ronald McDonald House- The Ronald McDonald House creates, finds and supports programs that directly improve the health and well being of children. They help families stay together during times of need. They provide a warm home environment for families to stay while a child is in the hospital or needing health care at a local hospital. This past fall we helped serve food at the Ronald McDonald House in Minneapolis. It was such a wonderful way for us to give back. Many of our friends in the NICU spend time at the Ronald McDonald House too. Click here to learn more.
CaringBridge-CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. I never had an experience with CaringBridge until Ella was born. It made it easier for us to share her story without having to repeat it over and over. Now I realize how important it is for family and friends on the outside as well. We have friends who currently are sharing their journeys on CaringBridge and I love how we can know what is going on with our loved one without having to keep bugging the family with phone calls, texts and emails. We still can feel connected whether it be reading the journey or sharing the story. We know how important connection is in the hospital and so we continue to spread the word about CaringBridge to other NICU families. Click here to learn more.
Faith's Lodge- Faith's Lodge provides a place where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future. If you have read my blog in the past, you know how much we love Faith's Lodge. As a bereaved parents, to us it was the place that wrapped its arms around us and helps us start the long healing process. We continue to give back to Faith's Lodge either by attending their events, taking part in their parent outreach committee, or donating money in memory of Ella. Ella has a beautiful stone placed on the pathway up at Faith's Lodge. A little piece of us will always be there. Click here to learn more.
March of Dimes-March of Dimes' mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Their website provides lots of information to NICU families. I remember sitting in the family lounge at the hospital searching information about prematurity and NICU terms so that we could be advocates for Ella. This year we walked in their March of Babies as Team Krumwiede. It was inspiring to be there walking alongside other preemies who started out at 24 weeks like our little Ella. The March of Dimes provides education and research so that other babies have the chance to come home some day. Click here learn more.
Ella's Halo- (of course)- Ella's Halo is helping to bring small comforts of home to NICU families. This past year has been amazing! We have had two successful events, have started working with all 3 Level III hospitals in the Twin Cities, and have started to raise awareness to others about what Ella's Halo is all about. I am looking forward to the new year and all of the exciting things Ella's Halo will continue to do for families. I know now that it doesn't have to be much to touch some one's life and that is exactly what we hope Ella's Halo does for NICUs. Bringing comfort to help babies and families and making their journeys easier.

All of these nonprofits have touched my heart in the last 20 months. And now that we have officially hit Black Friday and Cyber Monday it gets me thinking about how I can give back to these organizations. What can we donate to help them? How can I help them help others? Because without them families would have a harder journey. These nonprofits are helping families and I am thankful to help be a part of them now too.