February 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.

We know Tina from back when we were in high school.  Coming from a small town, it broke our hearts hearing about a family we knew so many years ago was just starting their NICU journey.  It breaks my heart any time I hear about a baby entering the NICU, but even more so when we know the moms and dads and the journey they are about to embark on.  Here is their story.

Kaislyn Toni Drewes
Written by Tina Drewes

Former NICU Mommy

Things started to change at 25 weeks. I noticed swelling in my legs and just thought it was from being pregnant, and that I was retaining water until someone said I should go in. I went in to the doctor at 26 weeks and they noticed elevated blood pressure and protein, so I was asked to check in to the ob floor for monitoring two days later for just a few hours. However, a few hours turned into 3 days. After checking in, my blood pressure was 140/100. They thought it was from getting settled in, but it kept rising. They started pumping in blood pressure meds to lower it, but it got as high as 170/110. I was given a steroid shot in case of early delivery.

After three days I was able to go home on very strict bed rest! I made it two more weeks, to 28 weeks, and then had another doctor’s appointment. After looking at an ultrasound and checking my protein levels, I was told I needed to head to Fargo in case we had to deliver!

We checked in on a weekend and were told the baby would be delivered on Thursday. After they did some research, they determined we were able to hang out for a while and see how things would go. I was given a second dose of steroids and was put on magnesium sulfate (worst drug in the world). I was told that I was at a serious risk of having seizures or even stroking out due to how high my blood pressure was (which I felt fine the whole time).

They were monitoring me very closely, and I could not get out of bed for anything! I could sit up for only a little while, but needed to lie as low key as possible! The magnesium made me very sick, retain tons of water, and very weak – it’s a muscle relaxer that also helps with preterm labor. Each day we were told we may be having the baby or we may hang out but whatever is best for baby is the path we would take!! So 3 days after checking into Fargo, I knew at 3am we were going to be having a baby sometime within the day! They noticed on the ultrasound that the baby wasn't growing much since my blood pressure had spiked. I was told a C-section was our only option, but I wouldn’t need to be put completely out, and Darin could be there with me. Only to find out I was going to be completely put under, and Darin could not be with me! From the minute I left Darin, they had our baby girl to him in 12 minutes for a quick picture and off to the NICU. I had to go down a floor for recovery. I was finally able to be pushed back into our room later that afternoon and finally got to see our baby (besides pictures) at 10:30 p.m., when I actually had the strength to get out of bed to go to the NICU – and she was born at 1:42pm!

Kaislyn Toni Drewes was born on January 29, 2011 at 1:42 pm. She was 1 lbs 15 oz and 13.5 inches long.  I was finally able to get out of the hospital the following Thursday, because my blood pressure finally came down. Kaislyn was on a vent for almost 1 month and was in the NICU for 128 days – 4.5 months!

She struggled with sucking, swallowing and breathing, so she ended up getting a feeding tube put in due to her not finishing all her feeds. A week after surgery we were home free, with no monitors or anything other than a button in her belly for feeding (what she didn't take from the bottle), and a list of doctor appointments.

She also had a few issues with her heart. PDA open, ASD, and VSD, so we get to see a cardiologist for many years, and pray she will never need surgery! This month she will be 1 (9 months corrected age). Hard to believe, and wonder where the year went!

She is doing great, but is still very small (born at 1 lbs 15oz). In December she was 11 lbs 6 oz! Her feeding tube was removed in August and she is doing great! Right on track and continuing to go to follow up appointments, and to her cardiologist. 

Thanks for reading our little miracle’s story. 

Halo Happenings (January Edition)





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

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



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

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.