It’s Monday, again. I really hate Monday. No good can come from this day. Saw some really nice pics of BTR on their vacation over the last few days. So jealous right about now. I could really use a get away, and Hawaii would be perfect right about now. Alas, that will not be happening for quite some time, if ever. Other priorities at the moment. So for now I will live vicariously through BTR and dream I am there.
So, we need to learn how to change Nicholas’s feeding tube. This should be interesting. He hates having it done, and I know my hubby will be extremely nervous about doing it. Hopefully after his heart surgery he won’t need it anymore. He can eat just fine, but because of his heart he breathes too fast and it isn’t always safe to give him a bottle. Still hopeful for him to be home next week.
Nicholas
Well, I have decided to start writing about my little guy Nicholas and what he is currently going through since he was born. Mainly I figured this may be therapeutic for my self, but also others may benefit from it. First, I am a 30 something mother of 3 plus one step-son. I try to be a positive person and find the bright side to any situation. I am a big fan of music and movies, love trivia, and right now have a huge crush on BTR, which helps provide and escape from the reality that is my life.
On March 29, 2012 my son Nicholas was born. Pretty normal pregnancy, nothing out of the ordinary. The day after he was born it was determined he had an heart defect. There was a hole in the center wall of his heart. Thankfully this is fixable and he will have surgery in a few months. However, this was not the end of his troubles. Later he was diagnosed with DiGeorge Syndrome, which is a defect in the number 22 chromisome. I had certainly never heard of this before, and have been getting quite the education. This disease, also known as 22q, can be quite complicated and there are a lot of symptoms that can go along with it. Right now he has the heart defect, and his parathyroid gland does not function meaning his body cannot process calcium like it normally would. Other complications could be his immune system may be compromised, learning deficits as he gets older, delay in speech and motor functions, inability to eat, psychological problems as he gets older. These are all just a possibility and does not mean he will get every problem that could go along with it. Right now it’s a wait and see how he develops, which really sucks that they just can’t tell you he’s going to have this issue and that issue.
He is currently still in the NICU and I don’t know when he will be coming home. It’s becoming very stressful on everyone. My husband wants answers to everything, and right now the doctors just don’t have them. Currently he isn’t holding food down very well, which could be from either his meds or the 22q. His breathing is way too fast, and they don’t know why it isn’t improving. Part of the reason is his heart, but there should have been some improvement. Because of his breathing he can’t bottle feed and needs to be fed through a tube that runs down his nose into his tummy. Every day he’s poked for blood and is now anemic. More blood needs to be drawn to test his immune system. With all that is being done to him he has been a trooper and tolerated it all. He has been so strong through all this and he’s not even 4 weeks old yet. He truely is my little hero and I am so blessed to have him. <3
