Happy Holidays

Happy Holidays from your friends at Ella's Halo!

Catching Up

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

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 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

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

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)

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

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

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 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

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!

1. 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.
2. When reading, babies hear different emotions and expressive sounds which helps to foster social and emotional development even at a young age.
3. 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. 

1. 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.
2. 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.
3. 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

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

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

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)

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

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 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.