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Challenge: NICU Parenting

Deklan Robert - Our Long Awaited Miracle

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Deklan was our third try at IVF. We had lost twins twice due to miscarriage after successful transfers. Finally we had transferred two embryos and one successfully implanted. My pregnancy was normal, aand at just over 37 weeks it was decided to induce due to high blood pressure. After 27 hours of labor we had an emergency c section due to his heart rate shooting up to over 200 while I was pushing. When he arrived he was perfect- was rated 9.5 on the APGAR scale. Everything seemed normal until we tried feeding him a bottle. My milk supply hadn't come in yet and the nurses recommended we give him some donor milk. As we fed him, everything that went in came out his nose. At first no one seemed too alarmed, he still seemed healthy. By day 3 he needed to go under bilirubin lights because his levels had gotten high. They put him in the special care unit. It wasn't until a nurse in that unit fed him that concern grew. A nicu doctor examined him. The doctor was afraid Deklan had a cleft in his soft pallet and no uvula. He was put on a feeding tube. The next day he was transported by ambulance to Children's hospital, NICU. First thing Monday morning an ENT came in and examined him. Everything appeared normal, and we thought we were going to get to go home on Tuesday. By Tuesday morning Deklan was still having feeding issues and his billirubin had gone up again. Back under lights he went. We were unable to hold him as he needed as much light exposure as possible. At this point the tests began. An MRI, an echocardiogram, swallow study, and broncoscopy. No one could figure out why this was happening. Speech therapists worked with him and us and determined he was aspirating when he swallowed therefore he had to keep his feeding tube and it was recommended we not orally feed him. After 2 weeks, he continued to grow stronger and healthy so they determined we could go home. Unfortunately we had no answers as to why he had his feeding issues, it was just something we were going to have to work on. After months of therapy, multiple surgeries, a ng tube for two month, and then a g tube placed in his belly to feed him. Deklan's ENT always felt he was healthy and strong enough to eat orally so we continued to work on oral feeding and after 6 months we were able to stop using his feeding tube all together. He has gone from the 5th percentile at 3 months to now the 80th percentile at almost 10 months. We had a long journey, though many have it harder than us, our baby had a long road, but now he is thriving!

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