My name is Tiffany. I am 28 years old, and a full time mom and wife. Having support, whether locally or across the world, is a key way we help people experiencing gastroschisis.
On May 9th, 2011, I learned two things. One, that my husband and I would have a daughter! Two, she would be born with gastroschisis. The results were from a blood test, and were confirmed by ultrasound. Like many parents of gastroschisis children, we were told that this was the birth defect to have if you had to have a baby with one. Naturally, this is not what any parent wants to here.
I continued with my pregnancy, and pushed for as much information as possible. Knowledge is power; with knowledge, I thought that I’d have the ability to do anything I could to help my little girl. That is when I found Avery’s Angels, and found hope for our daughter. I kept every appointment, did kick counts, and insisted on meeting with the medical team who would be called in for delivery as soon as I could- even though it was suggested that I wait until certain milestones in my pregnancy. On September 24th, 2011 I noticed that baby wasn’t moving like she usually did in the morning. By lunchtime, I was at Labor & Delivery on fetal monitors. Baby was stable, but was in distress. I was kept for observation overnight, and held the next night as well. On September 26, I was greeted by my Perinatologist first thing in the morning. I was told that come 11 am, I’d have a baby. My doctor and I had discussed the possibility of a natural, vaginal birth. I was no longer able to have that option, because with each contraction baby’s heart rate dropped down and then leveled out again. I was taken to the OR and prepped. At 11:02 am, Nora Evelyn was born. I did not get to look at her or touch her. All I was able to see was a nurse rushing a very purple blob into the next room. I was given additional medication in my IV (as per my request, I’ve never had major surgery prior to having a c-section). When I was wheeled out of the OR, we made a trip into where Nora was. She had been ventilated, and had a nurse breathing for her. Immediate closure was out of the question because she needed to be stable- she had aspirated amniotic fluid which almost caused her heart to stop. She had been stabilized, and that was what was most important.
Because it was impossible for a PICC line to be placed in Nora (even with MANY staff members attempting), it was decided that she would need to have a Broviac line placed in her chest to receive TPN. This was done immediately prior to closure, which was on September 28th. Her belly was too small to fit everything in and have stitches, so her surgeon used surgical mesh to close her abdomen, and utilized a Wound Vac to help the healing process. Nora was weaned from Morphine fairly quickly. She had bandage changes done 2-3 times a week- she HATED them.
After 29 days in the hospital, Nora was finally able to come home. We brought her home with the Wound Vac, and used it for a total of 77 days. Feedings had progressed wonderfully until it was time to introduce solids. Nora has worked past an oral aversion, and we found resolution to her reflux around her first birthday. Nora is now 2 years old! She loves eating popcorn, playing outside, helping fix things, and snuggling with her lovey, Lion!