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Challenge: NICU Parenting

Miracle Babies

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Our family's NICU journey began almost 4 years ago with our heart hero Kendall. I had a very complicated pregnancy from the time I found out I was pregnant. We were told on multiple occasions our baby wasn't going to make it to birth. At 23 weeks our daughter was diagnosed with a heart defect. Because of my prior complications we had already anticipated a premature birth, but with the added heart problems we were told again our baby wouldn't survive if she came early. At 26 weeks my water broke, we rushed to the hospital fearing the worst. They were able to stop my labor and from then on I would remain in the hospital on bed rest. For 13 days I went back and forth to labor and delivery. On March 1st our daughter started to show signs of being in distress after I fought off a 2 day stomach bug. The doctors decided she had a better chance of survival if they delivered. A few hours later our 1lb 15oz miracle Kendall was born and whisked away to the amazing hands of the NICU staff. We had been prepped for her to be transported to Children's Hospital right after birth but her cardiologist came to our hospital to assess her and decided it was safe for her to remain there for the time being. It was a rollercoaster ride I never thought I'd get off of. She was transferred at 6 weeks old for her first heart surgery. She was able to come back to our main hospital a few days after for recovery. She was thriving and doing so well after that. We prepared for her to come home. We got the nursery ready, pediatrician lined up, we were bringing in the carseat for her carseat test and Bam! Just like that our world turned upside down again. Kendall was struggling to breath more and more. The head neonatalogist put in a call to the cardiologist and set up transport for Kendall to go back to Children's Hospital in hopes they would perform her needed open heart surgery. Within 24 hours of being admitted Kendall had went down hill and ended up coding. The longest 26 minutes of my life were spent watching the team whirl around the room working to save her life. I had never seen CPR performed let alone on my less than 5 pound newborn baby. Finally they got her stable and our nightmare was over. It was a rough few days as we just watched and waited for Kendall to slowly get better. Once again the rollercoaster ride was headed back up. The cardiology team wanted to keep her stable and let her grow before they performed her surgery. It was the longest waiting game. I drove an hour every day to hold her and be with her. Within time her body started to get tired again, she required more and more oxygen. We had meeting after meeting with the team trying to talk them into doing the surgery. One night we got a phone call from the hospital we feared. Kendall once again needed to be intubated. We rushed to the hospital to see our baby fighting once again. Later that day the surgeon came in to see us, he decided to listen to me and my gut and schedule the surgery for that Monday. It was a brutal 2 days as we waited for the day to come when we once again handed over our precious baby not knowing what was going to happen. We sat surrounded by family patiently waiting for the play by play from the nurse. After a long 8 hours Kendall was out of surgery and resting. They led us to see her, my baby was almost unrecognizable with even more tubes, wires and machines. We sat by her bedside day and night watching her every breath waiting for her to open her eyes. From the day she finally looked at us until the day we went home was a blur. It was a short 2 1/2 week recovery and we were finally on our way home with our precious little fighter! Now she is a thriving, sassy almost 4 year old that I could never imagine my life without! It was a long 5 months living within the NICU walls of 2 different hospitals, but we survived knowing that if Kendall could fight the way she was fighting then we could stand by her side and fight with her!! Almost a year ago we were blessed with the birth of our twins who also started their lives off in the same NICU Kendall had called home for so long. We feared what could happen if I became pregnant again knowing the chances of having another heart baby and another preemie. The day we got confirmation I was pregnant we also got the news it was twins. We we're shocked and even more terrified knowing that twins usually make an early entrance and now we were worried about 2 babies having heart conditions. The twins were monitored closely with biweekly ultrasounds and a fetal echo to look at their hearts. We saw one of the same cardiologists Kendall had seen and she gave us the news that she was 99% sure the twins were heart healthy but we'd have to wait until after birth to get the definite answer. It was such a relief! I had an uneventful pregnancy until 30ish weeks when I started having Braxton Hicks that progressed day by day. At 32 weeks I went into labor and the twins were delivered. Quinn was 3lb 13oz and Callen was 4lb 4oz. Right after they were born Callen became distressed and once again my babies were whisked off to the NICU. This time my NICU experience was completely different than the time before. The twins progressed and gained faster than I had ever imagined they would! We got the amazing news they were heart healthy and after a short 13 day NICU stay we were sent home just days before Christmas. We were so thankful we got to spend that holiday at home together! No NICU stay is easy no matter how long! Now I'm part of my hospitals NICU Parent Advisory Board where we are on hand to help any family member needing support during their NICU stay. It's the most rewarding feeling knowing I can help a fellow NICU mom get through a very trying time and help her to stay focused and keep faith that the NICU rollercoaster will eventually end!

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