My Survival Story
David came home from the NICU on May 27th. This is when I started spiraling. I think post- partum isnt talked about enough, and I know that the effects of a NICU stay are not talked about enough. This was my 5th child (4th biological baby, my oldest is my stepdaughter), and I felt clueless. My world was just rocked and I no longer had the eyes of the doctors and nurses on my child and I. I couldnt sleep, I could hardly function. I felt like I was doing everything wrong and if I wasnt watching my baby constantly he was going to die.
I was still pumping and David struggled with his bottles. He would take an hour to eat, coughing and gagging throughout his feedings. I would spend 30 minutes pumping, and hour feeding him, pump for another 30 minutes and then it was time for him to eat again! I was not handling it well. I was shaky and nervous with everything I did... then 7 days after we were released from the NICU he started projectile vomiting. It was green and he wasnt keeping any of his feedings down, finally at midnight I decided we had to go to the ER. It was clear very quickly that he was being admitted. At 4 am, I called in the troops. Told my husband he had to come to the hospital and called my mom to go stay with our other children.
He had a bowel obstruction, he needed surgery again. We waited the first 4 days to see if rest would fix his obstruction... by the end of day 4 I was yelling (not really, but I was so upset) at the nurses to call the doctor immediately and get my son help. I felt like I was watching him starve, he was on bowel rest which meant he received nothing but IV fluids those 4 days. Every time we tried to give him anything he vomited green again. It was clear to me this was not going to heal on its own. At 6 pm that day I watched him be taken away again by the nurses and surgeons. He ended up having "100s of adhesions and 1 big obstruction." We were in the hospital for another 7 days.
For the next month we had a hard time with his bottles, it took him a long time to eat, and then he started to make noises, which turned into retractions. I took him to the ER a couple of times but his oxygen levels were ok so they sent us home. A couple days later we saw a pediatric pulmonologist that ended up admitting David so they could do some testing. It was clear that something wasnt right. The testing showed he wasnt aspirating, but the doctors could see I wasnt crazy… He could not tolerate his bottles without it turning into retractions. They decided to put an NG tube in and hold bottle feedings for the time being. The doctors planned to send us home and again I lost it. How could you send us home with an NG tube, no idea whats going on and no plans on what we are doing about this? One of the doctors agreed, he said “honestly we are throwing shit at the wall and hoping it sticks”. FINALLY I started doing research of my own. I found that Cincinnati Childrens has a CDH clinic, a whole team of doctors that handles babies that were born with CDH. I told the doctor I wanted a referral there ASAP. They did that and we went home with David on an NG tube waiting for a call from Cincinnati….
