Friday, April 22, 2011

Cardiology and Speech update

So we had our bimonthly Norwood Clinic today and it went relatively well, you could say it was a party. In one small exam room Jasiu hosted the nurse taking his sats, weight and blood pressure (which was unsuccessful on all 4 of his appendages) me and Joe, the speech therapist, occupational therapist and the nurse practitioner. John did quite well with all that commotion and showed everyone his good side until it came time to feed, since that is his weakest point right now. I still can't believe this kid has half a heart and his biggest hurdle is the feeding right now.  So we fed him and he did his usual. He frantically searches for food like all newborns, than he gets the bottle sucks and swallows 4-5 times and then turns away from either annoyance or pain or irritation. When he got upset, I was able to calm him down with the pacifier and than all over again... the verdict... It's not the swallowing, he's doing great at that they can only suspect that the tube is irritating his throat, or the reflux or the taste of the formula that we are fortifying the breast milk with. So we were sent home with a whole bunch of let's try's.. that's pretty frustrating because I want an answer to a question that is not easily answered and we must do things by process of elimination and trial and error. Ohh this will take a lot of patience. So we will try and hope things start turning around feeding wise.  The worse part for me is that everyone that knows us outside of the heart community always asks, "does he still have the tube" No one asks about his HEART ! My theory is that since they can't see his scar or visibly see his CHD, it somehow is diminished in importance, yet since they see the tube they are quite concerned.  I keep telling them and myself, that though we want him to thrive and be able to eat all on his own, the tube is not as important as his heart right now.  Anyways, enough venting and on to other updates..

On Easter we were given the green light to try another half day tube free to see if Jasiu will eat more by bottle, this means that we will all be happy to see his little face but someone will probably be feeding the baby around the clock as one ounce per feed only lasts so long.  So we should have some great pics of him and his cute little face.  We did have a professional photographer come to the house and take pics of Jasiu and his sister Emily. See link below for a small snapshot of the cute photos we were given.  Thanks to Lisa of Lil Me Photography. She was so patient and the pictures came out great, once I pick all the ones I want (probably all of them) I will post here as well.

And some other fun news from Dr. H is that we are good to do BELLY TIME !!! Yippee.. Jasiu can work on some upper body strength. He does quite well with holding his head for a bit at a time, but now he can start using his hands to support himself. So we did 5 minutes of belly time and it looked like our little rock star was going to crawl away. He was able to support himself for a few seconds on his hands, but his legs were moving so much that it looked quite funny.  Here is a pic of our little turtle.

Next appointment in two weeks and we will have an echo.

First Belly time ever - 8 weeks old exactly !

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