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
