NICU series Sonny

So Sonny gets to keep his name because he has some up coming benefits and will be pretty popular soon!

Sonny and his family are very special to our family! After we had been in the NICU for about a little over a month, someone told us that there was another baby in the NICU with arthrogryposis. We asked if we could meet the parents, we so badly wanted to know how their child was doing, if our two kiddos were similar, we wanted to talk and be able to connect with them! But we were not allowed to be told their names because of the privacy laws the hospital has. We could meet on our own of course, but there was no one who could tell us where he was or who the parents were. We were a little bummed about that but just kept on doing our thing.
One day right before I went to the pumping room, our OT came in and I was telling her how badly I wish we could just run into the family on our own so we could meet them! Our OT agreed she wished we could meet the other family but there really wasn't anything they could do. I went to the pumping room after the conversation and I heard there was a lactation consultant in with another mother. I overheard the conversation, and the thing this mommy needed was a pumping bra, which I had just bought a new one, but I really liked my older one best and felt bad I had wasted my money on a new one... I wasn't sure how to butt in on their conversation, but I just felt so strongly that I needed to offer my extra one to her.. So I just did it! I apologized for cutting in but told her I had an extra one of these and if she wanted it. After that we kept talking for awhile, and as I was cleaning up my equipment I asked her if they were here because their baby was born early, most people have their babies in the NICU for being preemies so I wasn't surprised when she said, Yeah, he was some weeks early," but then she went on and said... "But he has some other issues too, he has what is called arthrogryposis..."
My jaw literally dropped!!! I said, "WHAT?!?!" I think that may have taken her a little back, until I said, My baby has arthrogryposis!!!! We finally met!!!! It was unreal! All because of a pumping bra!!! Now I almost think, I took all that time and energy to buy that bra just so I could meet her! It was truly an amazing moment! To be able to connect to another mother who has a child in a similar situation as yours, when you feel all alone and like no one else can understand how you feel!
To this day, we talk a bunch and keep each other updated with life! Sonny's mom has truly become such a great friend, and we just love their family.
Anyway, on to his story.
Sonny was born with his legs straight, not able to bend. clubfoot, respiratory issues, lack of tongue control, and they were able to diagnose his condition as Wieacker Wolff Syndrome. There have been less than 20 cases of this syndrome, and I believe there is currently no one living with this condition in the USA besides Sonny. Sonny's condition was found at their 20 week ultra sound, where they saw that something wasn't right, his hands and legs, they could see the contractures and told the family that he would most likely pass away at birth. As they prepared to have this baby, they also had to go ahead and prepare a funeral. Imagine the most exciting day for someone who is pregnant and knowing that they have to have a funeral ready just in case! Devastation and not how any mother want's to spend the rest of her pregnancy! But to doctors surprise, he made it through his birth! He had his set of issues along the way. He was put on pain medication to help with the pain he may have from his contractures and moving with them, he was having troubles swallowing and eating, and some difficulties with breathing. After all of those things, he then started to have some seizures, but those were able to figure out and get under control. Sonny spent 6 weeks in the hospital and during that time he ended up having a gtube put in. He was then able to go home on oxygen.

Sonny gets a part two to come later when we have internet and a working computer, bit for now he is doing well and growing like a weed!