Thursday, December 6, 2012

Lungs, Stomach and Eyes Update.

Lots to update, where to begin.  We'll start with the lungs.  On Tuesday I took Ryan to get his 2nd synagis shot to help prevent RSV, and he had a check-up with his pulmonologist.  She said that his lungs still sound clear, which is great.  There was a note in his file from the PPHN clinic that suggested maybe we could wean down his oxygen a little at this appointment, but she didn't want to do that quite yet since we just weaned down to .5L and he's not gaining weight as well as they'd like.  Weight gain seems to be quite the topic, which I understand.   She mentioned that weaning the oxygen can contribute to a plateau in the weight gain because if he's working harder to breathe then he's burning more calories even while resting.  So I'm glad they aren't going to wean his oxygen any further until we start to see more weight gain. 

Not much to update on the stomach other than increasing his feeds and we scheduled his Mic-key button placement surgery.  We have added the 22 calorie fortifier to his breastmilk, and he's tolerating that fine.  We've also increased the volume of his feeds, and he's doing ok with that, too.  He even slept all the way until 5:15am this morning!  He'll go in the day after Christmas to have the peg g-tube switched out for a Mic-key button.  This button is hard to explain, and I'm a visual learner, so I'll just include a link in case you want to see for yourself.  Basically, he's going to get the more low profile/skin level tube so that as he starts getting more mobile the tube won't get in the way.  You can check it out here:

Now for his eyes.  This morning a very nice lady from the Braille Institute came to our house to meet Ryan and start working with him to improve his vision and visual brain development.  This was such a great meeting for ME because she was able to show me that he really IS able to see things!  She had all these great toys and lights she was able to use to get his eyes to look at objects.  She left me with a cool colorful flashlight to work with him at each diaper change, and the Institute is going to send him a little care package of other great things to use with him for visual play.  She said there were so many things he was doing that she was really impressed with.  For example, he sucks on his pacifier really well, he brings his hand to mid-line to grab his little stuffed paci holder along with some other toys we have, and he really did look at her face and seem to see her and interact with her (complete with his gummy little grin!).  She said those were all really good signs for his brain development.  I told her about the mild hydrocephalus they had seen in the last head ultrasound, and about his hearing issues, and she was very positive about everything.  She said that sometimes after being born so early and going through so much in the hospital, some preemies just sort of shut down their development as a sort of survival mechanism.  Now that he's home, he's already showing improvement in leaps and bounds.  She also said that the extra fluid in his brain, whether it's true hydrocephalus or not, could be contributing to the hearing issues, and it could be something he will grow out of.  I'm really optimistic for Ryan after meeting with her, and SO glad she will be coming to work with Ryan every other week.  Such a blessing for him.

That's it for now!  Our family has been busy decking the halls and trimming the tree in anticipation of the Christmas holiday, and we had a wonderful day of family and rest yesterday for my birthday.  My facebook friends already saw the video of Dani singing happy birthday to me, and I'll post the 2nd awesome gift I got that day when Ryan started squeaking his Sophie toy for the first time.  Those two kiddos made this year's birthday just so much more amazing.  It's crazy to think that one year ago today I first found out about the complications with Ryan's pregnancy and started bed rest.  Now here we are celebrating the season as a family of four.  God is good.

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