We've ended one of the busiest weeks we've had with appointments in a long while, but we made it through with the help of our family and friends (a big thank you to Nana, Grandma Karen and Grandpa Fred and Vickie for all your help this week)! For the appointments that were just for Alex, it was really nice not to have to drag Nicholas into the winter cold and snow unnecessarily! He especially appreciated getting to play at home with some serious one on one spoiling :)
The best part is after all these appointments: we are still smiling.
We crammed a lot into this week so I will try to stick to just the highlights: GI says they are satisfied with the boys growth and after discussing their intake, they want to see them doing a bit more solid foods now and gave us some updated guidelines about what they hope for formula intake. They will continue to monitor the boys growth to make sure it stays on par with these changes. With our request, they also changed one of Alex's reflux medications to what his brother is on which seems to be working well and its MUCH easier now to get him to take his medicine (it smells much sweeter so he probably thinks its candy, ha,ha).
We also saw the plastic surgeon who is monitoring Alex's helmet therapy. He is happy with how things are going and says to anticipate a second "course" of treatment for the best results, which means he will likely stay in his helmet til June or so. He also gave us some further instructions about the care of his back scar and that when Alex is older if he wants, they can revise the scar. (They first operated on him when he was less than 48 hours old and when he weighed about a pound and a half so there wasn't much skin to work with and they had to be creative--meaning its not a very smooth or attractive looking scar.) We could care less, he's absolutely perfect in our eyes but it was nice to know that when Alex is older, if HE'S not comfortable with it, he could be the one to help make the decision if he wanted to try and improve it. Personally I think its a pretty amazing battle scar and I hope he's proud of everything he has come through (his parents certainly are!).
The BEST hopeful news of the bunch: Alex saw cardiology today and had a scan and some other tests done. The inflammation in his heart is still there but does look better than the scan three months ago. they also took him off of his oxygen the whole time we were there and watched his oxygen saturations and they were great. They say that his heart might take months or even a year or more to completely recover if it was just directly related to his lung disease (which is what they've always suspected) so they are not surprised by the scan. The big question will be if his lungs have grown enough "good" lung tissue to do the job it needs to, without putting any extra stress on the heart. The only way to know this is to take him off the oxygen and keep an eye on his saturations and scan again in a couple months.
Sooooo after a bunch of tests and checks, we got the go ahead to try him off the oxygen!!!! we are currently in the two week trial of NO extra oxygen!!!!! We will periodically check his sats throughout the day and also at night during the next two weeks. As long as his sats stay above 95 during the next two weeks, then he can stay off of it!!!! Obviously if he can not maintain this, he will go back on the oxygen immediately. The cardiologist reminds us that it usually takes up to two years before a baby recovers completely from chronic lung disease due to severe prematurity but we are all hopeful that he has enough lung capacity to not require continous oxygen anymore. Time will tell. He will have another heart scan in 6 months either way to make sure his heart continues to improve as expected. Please say a prayer for him.
I swear Alex is ALREADY happy without the plastic up his nose and mommy and daddy are hopeful that we won't have to constantly keep an eye on how far the oxygen cord stretches, or if we are tripping on it, sitting on it or if its within easy reach of Alex OR his brother :) It feels like a little bit of freedom. Already Alex has seen parts of our house for the FIRST time (the oxygen tubing could only stretch soooo far).
In future news Nicholas will have his follow up NICU evaluation by the medical and developmental specialists (we sure think they will be very happy with how well he is doing!) and we will have a second opinion/consultation for Alex with orthopedics. Both boys will also have their 9 month pediatrician appt. Yes, 9 months old now---can you believe it?