From Arriving Seven Weeks Early To Starting Kindergarten
Skylar was born 7 weeks early on August 16, 2013 and just 4lb 6oz in Elkhart Indiana. I remember feeling like the thought of her having to stay in the NICU for any time at all was devastating. I couldn’t imagine not being able to take our baby home right away. Little did we know that a stay in the NICU would be the least of our worries. On the night Skylar was born she was given her newborn EKG. The lady checking her heart actually worked at Riley and found a murmur in her heart. The next morning Skylar was air lifted to Riley, they released me the next morning and we followed them down.
After additional tests at Riley they discovered Skylar had a couple of problems with her heart. First, she had a VSD, a hole in her heart not allowing the proper circulation of blood between her chambers. Second, something called an Interrupted Aortic Arch, where her aortic arch in her heart was not attached. Because of her heart disease and the discovery of a soft cleft pallet, little or no thymus gland which leads to immunity disorders, and prematurity they believed Skylar had a chromosome disorder called DeGeorge or 22q11.2 deletion syndrome. Later in our stay, her blood test confirmed she did have partial DeGeorge or 22q11.2 deletion syndrome. This disorder is passed on from the mother but after testing from both of us we found out we were not carriers and the chances of a child being born with this are 1 in 4,000.
On August 30 (4 days old) Dr. Brown performed a left swing down procedure on her aortic arch and also place a pulmonary band. The surgery went well and things looked positive and we were hoping to be home soon until Sky was bigger to fix the rest of her heart. Erik had to return back to work so I stayed at Riley with Skylar. On the night of September 4th Skylar developed a small grade fever. By 5:00 am Thursday morning they were rushing her into emergency surgery. They discovered Skylar had NEC (Nexrotizing Enterocolitis) which is an intestinal disease. They also felt like her heart was not allowing enough blood flow through to her stomach and body so they needed to go in and perform an emergency heart surgery. They decided to perform surgery on her stomach first and Dr. Ladd would perform it. I remember Dr. Ladd talking to me (Erik was still on his way down) and trying to explain the seriousness of the situation. They were giving her a less than 20% chance of survival and that we needed to prepare for the worst. Erik finally arrived at 11:00am. Skylar would be in surgery for over 12 hours. I remember sitting in the waiting room and one of the nurses who watched Skylar almost every day since we got to Riley came in a sat with us after her shift was over and waited for a while with us and talked with us and cried with us. This is just one of the many examples of how amazing the nurses and doctors were at Riley and how they became our family.
Skylar was finally out of surgery and the doctors were still not sure what to expect. We would just have to wait and see over the next couple days. Dr. Ladd had to remove 90% of her large colon and placed an ostomy. Dr. Hoyer tried to balloon Skylar’s arch open to allow more blood flow but that was not working so he placed two metal stents in there. After 2 days Skylar finally opened her eyes. We had no idea what to expect but we knew we were so lucky to be at Riley. We ended up staying almost six months at Riley. I stayed the entire time, not ever leaving Skylar’s side and Erik had to work. Erik would come down as soon as he could Friday and would leave again Sunday. The rooms at Riley allowed us to stay with Skylar which was so important to us and to her recovery.
We waited week after week until Skylar was big and strong enough to undergo another open heart surgery to fix her VSD, her ostomy repair, and colon reconnection and soft pallet closure. I remember the doctors talking with us at the end of our stay and remarking what a miracle and strong girl we have, because they honestly did not think she would make it. We were finally able to go home on January 11th.
Sky saw an immunologist for the first 4 years for her immune deficiency and she was and would get sick more often and more severe than normal. Skylar hardly spoke and ate until she was about 4 ½. Today Skylar is a beautiful six-year-old who is loving Kindergarten. She has no delays socially, emotionally or academically and has no restrictions. On her 6th birthday we were finally able to take out her feeding tube port. She continues to get speech services but is a little chatterbox. All together Skylar has had 11 surgeries. We owe Riley and her doctors and nurses so much.
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