I won't bore you all with the details of how much pain I was in (HORRIBLE) but it was actually a welcome distraction from what was really going on. It took me a few days to be able to get out of bed and go see him. I was scared to see him, I knew if I saw him, that meant that this whole thing was actually real. He was beyond tiny, only weighing in at 1 lb 6 oz and had so many tubes & things on him that I could barely see what he looked like.
I don't recall who told me about the Pierre Robin Sequence or that he did not have Dwarfism, but I know I was told. All that mattered to me was hearing that Pierre Robin is fixable, and that was good news. Other than the PRS, he didn't appear to have anything else wrong with him. PRS consists of Cleft Palate, Underdeveloped chin & lower jaw, and the tongue is too big to fit in the mouth and stays in the airway, making breathing and eating extremely difficult. Of course it was something we had never heard of before. I'm not gonna lie, the inside of Bodie's mouth is a scary sight. Now that we've done lots of research we know that PRS does affect you in some way for the rest of your life (most commonly-hearing problems, teeth problems, speech problems). It is also usually associated with another Disorder. While in the NICU Bodie tested negative for everything but Muscular Disorders (dystrophy, myopathy), he will require a Muscle Biopsy in the near future to rule it out. He will also need surgey to repair the cleft, usually done between 1 & 2 years of age. I know there is a jaw lengthening procedure but the Dr's haven't talked to us about that, we are still trying to find info about it.
Back to the story...He was born at Memorial Hospital in Gulfport, MS and he gave them quite a run for their money as soon as he came out. They had to call someone from Ochsners Hospital in New Orleans LA to come and intubate him, because of his tiny size and blocked airway, they were having no luck. It horrifies me to think what Bodie must have went through in his first hours and what a terrible welcome into the world! A week later we all decided that Memorial was not quite equipped to handle an infant with such special needs and he was transfered to Ochsners.
Wade seeing his brother for the first time during the transfer.
Ochsners was a grueling 2 hour drive there and 2 hour drive back from our house, but we wanted him to have the best care possible. First impression of the NICU was good, the age cutoff for siblings was 3 so Wade could go in, which we were happy about and it seemed more lively and happy than the small Gulfport NICU. He was there for about a week when the Doctors decided he would benefit from a Tracheostomy. SAY WHAT??? What's the only thing worse than being told someone is going to cut a hole in your baby's throat? Actually seeing a 1 1/2 pound baby with a tube sticking out of their throat that is bigger than they are! Again with the Sobbing!
As much as I hated it, he did seem to come alive after that. He started opening his eyes and interacting. The next few months were a blur, we were basically holding our breath, waiting around for what other horrible thing awaited us. But nothing else really happened. He slowly but surely gained weight and improved. He had a wonderful Primary Care Nurse, Corinne, who really bonded with him and fought her heart out to get him better and make sure he had the best of everything! I still remember the best thing she ever said to me, he had been there about 2 months and she was bragging on how smart he was and said there was nothing wrong with his brain.I probably started crying, I'm surprised I didn't fall down & kiss the ground! That was my worst fear! I couldn't imagine he could have survived such a miserable existence in my womb and near suffocation when he was born and not have any brain damage. That's when the wall I had built up around my heart started to crumble. The wall I built to try to protect myself if something really bad happened or he didn't make it. And that's when hope started to creep in.
He was about 4 months old when they told us they wanted to put a feeding tube in his stomach because his reflux was a big problem with the trach. Another crappy surgery, the scars are adding up, but whatever is best for him.
-Brandi
