We didn't know anything was wrong with our baby boy until the day he was born. He was measuring larger than my three previous pregnancies which in all are a different topic themselves. In every ultrasound he had his hand over his mouth so it was very unclear that anything was wrong or different about him. My blood pressure was high and no medicine was helping to reduce it. My OB was concerned about my baby going into distress so he took me in for an emergency C-section. On April 9th, 2012 my baby boy was born.
We hadn’t chosen a name for him yet as he came 35 weeks gestational. I didn’t even get a chance to see him as I overheard the doctor and nurses running to his side and saying he wasn’t breathing. So many thoughts were going through my mind as they rushed him into a separate room to intubate him. I asked how he was doing and to keep me calm they told me he was fine but I knew he wasn’t because usually my OB shows me my baby right after their born over the curtain as this was my fourth C-section.
Panic set in and it felt like an eternity I kept asking the nurses for my baby but no one would tell me what was going on. Finally my OB came in and talked to me and told me my son was born with a large tongue and they were taking him to All Children’s Hospital (ACH) in St. Petersburg to run some tests. They quickly brought him into my room in a traveling crib as he was being flown to ACH, I still wasn’t able to hold him or really see him as I tried to get up and they told me not to move. My husband rushed to the hospital to be by his side.
The longest two days of my life staying at the hospital without seeing my baby boy, my OB discharged me although he felt I needed another day to stay but knew I wouldn’t. On my way to the hospital to see my baby boy my husband and I started thinking more about names for him. We already had a few different ones in mind but I needed to see him in order to name him. My husband held my hand as we walked into the NICU,my heart was overwhelmed as I was finally able to meet my baby boy for the first time. I looked at him and said “Nathan, I love you.” Nathan meant a gift from God so the name was perfect for him. He was covered with a mask and under lights with tubes and wires all connected to him. A team of doctors came to talk to us they explained how they were still running tests and looking for Down syndrome or Beckwith Weidemann Syndrome or other syndromes. They also tried to feed him with a bottle but found it difficult so they put an NG-tube for feedings. They talked about a plan and getting him a tracheostomy to help with breathing. He had low blood sugar, a stork bite in between his eyes, a large stomach, a VSD in his heart, a PFO in his heart, he was born with a hypospadias, and he had an undescended right testicle.
We were staying at the Ronald McDonald House next to the hospital, but I felt it so difficult to ever leave his side. One night the nurse told us to try and relax and head back to the Ronald McDonald house to shower, eat, and sleep and she would call if anything happens. As soon as we were ready to head back to the hospital we get the call that Nathan pulled out his breathing tube and was breathing on his own. What a sign of relieve that he didn't need a tracheostomy. Now our new goal to leave the NICU was to try and feed him. So daily we would try feeding him in different way, this was an emotional roller coaster. We tried regular Gerber bottles, a syringe, a dropper, I tried breast feeding, and he latched but they wanted to measure how much he drank. He finally ended up liking a different nipple at the hospital that is hard to get once we left but at least he started eating.
Almost three weeks later we finally received the news from Genetics that Nathan had Beckwith-Wiedemann Syndrome (BWS). We didn’t know anything about BWS and we were scared as we researched it. We didn’t know what was in store for Nathan's future and we were looking for hope and answers. All we knew was that we were all in love with our new gift from God.
After twenty-eight days of being in the NICU, Nathan was coming home!
Every three months Nathan goes for his ultrasounds, every 6 weeks he gets his blood work and AFP tested. Every 6 months he goes to the cardiologist, every 6 months he goes to Oncology, every 6-8 months he goes to Urology and every year he meets with the craniofacial team.
At 5 1/2 months of age Nathan got his tongue reduction at Miami Children’s Hospital by Dr. Perlyn.
It was so difficult watching him go through that but he really bounced back right away. The first year was the hardest year as I was learning but Nathan has truly made the process an easy one. I am always worried and hoping that I am doing the right thing for him but I know no matter what comes his way he will be the fighter he’s been since day 1. He is so smart, kind, happy and a strong trooper. He continues to teach us every day and amaze us with his strength. God has truly blessed us and completed our family!
Nathan today almost 3 years old 03/18/2015.