Dr Appts

This week was full of doctor appointments it seems like. Tuesday we had a genetics counseling meeting to try to figure out why Noah had a lot of the problems he had. All in all, we really don't know anything. They did bloodwork and us to see if we may have passed any abnormal chromosome issues to Noah. He is missing a VERY VERY small part of his first chromosome. Come to find out, no certain chromosome does anything in particular. There are different bands that make up each chromosome and each band has all sorts of genes, DNA...etc etc. The doctor's haven't found anything through their research before our appointment for anyone who is missing as small of a piece as he is. There are some other issues that people had, but they were missing about 10 times more of their chromosome than what Noah is, however, the same band was missing out of all of them. There were a few things that were related between some of the cases they had looked at. Long story short, they want Noah to have his eyes tested and have an ultrasound done on his kidneys because those were about the only 2 common things they saw between the cases that he hasn't had tested yet. :) They were sending the report to his pediatrician and I'm assuming she will be calling us with a referral etc. to have those two things done. I'm assuming they will also be done at Riley Hospital. They have every area of doctor there you could possibly think of. Some that I never would have even thought about are there! It's a great hospital that is very close to us. I've never known anyone who has had to take their child there until recently. Things happen for a reason I guess.

Tuesday we had his swallow study to see if he's still aspirating. Noah decided to be a bit difficult that day. He wouldn't take his bottle at all. He thought it would be fun to sit and laugh at me and the doctor while we tried to get him to eat. I know he was hungry though. He ate 4 oz at 8:30 and then at 12 I gave him 1 oz just to hold him over until we got there. His appointment was at 2:15 but it was almost 3 before we got in the room to do the test. He was really fussy in the hallway waiting to go in for his test because he was hungry but yet wouldn't do anything with the bottle when we finally got in the room. Kids...they have their own way of doing things I gues huh?? The doctor ended up basically force feeding him which I think caused him to aspirate. He fought and fought and started to get mad, and of course when you are mad, you are more likely to aspirate when you are still learning how to do things like eat! He has to go back in 1-2 months for another one. The reason he gave us a range for this one is because he should be having his surgery soon and he said it may possibly set him back a little bit. He did however, increase his feeding by mouth to twice a day for 5 minutes. In that 5 minutes, he has been taking about an ounce to an ounce and a half depending on how focused he is. As long as he keeps getting better I don't care. I was already giving him this much by mouth before he told me to do it...and he told me it was fine. I try the bottle whenever he is awake and alert enough to do it...which is just about every time anymore.

Noah weighed 11 lbs 9 oz last Friday at his nurses visit, which should be over with now. He is starting to stay awake a lot more during the day. He takes about 2 to 3 naps a day and the length of time varies. Sometimes he gets in a few little 15-20 minute power naps, but usually wakes up because he's ready to eat. Last night he woke up ever 3 1/2 hours to eat which was such a change from the norm for us because he sleeps through the night. We are officially off of the soy formula now and on milk based formula. They switched him to soy in the hospital before discharge because he had diarrhea so bad. He was on 2 different antibiotics for 2 weeks and it wasn't going away. So far, even though today was the first full day, he hasn't had diarrhea and hasn't had more bowl movements than normal for him in a 24 hour period. He hates tummy time, but we tend to have him lay on our chest to get in as much as we can. He does great at holding his head up and HATES to lay down when you are holding him. He has to sit up and see what is going on. We are still working on getting him to sleep in his crib, right now he mainly sleeps in the swing. I have to get him use to the crib or when he has his surgery, assuming it's inpatient, will be a total nightmare I think! He goes Tuesday for our consultation with the neurosurgeon and it should be scheduled then. He had his first appointment with First Steps on Tuesday and she recommended quite a few different things for us to work on with him. She did suggest using the vent-aire bottles because they are angled and keep his head lined up more with his body which reduces the number of times he arches which opens up his airway more for aspiration. He is doing great with those bottles though so I will probably stick with those for him. I hope he passes his swallow study soon so that we can start on cereal and baby food close to the time he's suppose to. I think that is all of the new information for him that I can think of right now.

I am in the process of filling out an application for a local college here. Going through all of this with Noah is making me want to go back to school for nursing. I've looked into it, but I have to apply to see what all transfers from my Bachelors degree that would count towards that. They have an 18-20 month program that is year round if you already have your bachelors so that all you have to take are the nursing courses. When I originally started out in college, I started in a medical area, but gave up because I did horrible, but I never put the time or effort in it that I should have. I'm so much more focused now that I really think I could do it. Having to deal with the NG Tube for my own child has shown me I can do things that I wasn't sure I'd ever be able to do before. The NG Tube is quite different from the G Tube I've dealt with before. I'm just hoping that Noah passes his test the next time and we can resume our lives with a normal baby, that doesn't have the tube and tape on his poor little face all the time. He is an extremely happy baby. He has changed so much. Anymore, he is more and more like his brother, he only cries when he is tired, hungry, or needs changed, (or hot or cold), basically when something is wrong, and he isn't taking his pacifier as often either, it's more of a nap/bedtime thing now. He is so much fun to be around. You constantly get his sweet gummy grins and coos. He loves to talk to you. He loves getting a bath, although he doesn't always like getting dressed. I'll update more as I get more information :)