Other than being a little gassy with feedings, Gabe is doing well. He has started waking up hungry more in the middle of the night, but I think it's b/c we're playing with the dose/rate/and concentration of his formula and it throws his schedule off. He still doesn't like to take solid naps, but he does go to bed pretty well around 8 or 8:30. He has been very cute lately and has given us lots of smiles today. We went to the Cardiologist today and they said his heart is doing so well we don't need to go back for 6 months. He will be coming off Lasix over the course of the next 2 weeks. They typically continue Captopril for alittle while after surgery to give his mitral valve some time to relax without pressure against it so it doesn't get leaky. After the Cardiology appointment in May, we will go back in October assuming all is well. At this 1 year visit, they will do another Echo and if things still look good, take him off the Captopril and just follow him yearly. They were so happy with his color and how easily he was breathing since the heart shunting blood to his lungs is now gone. He's such a chunk! You should see the fat roles. He's gained a half a pound in a week, so we are cutting down the fortified formula from 30 cal to 24 cal and eventually 20 cal (normal strength). Next week we go to Pulmonary clinic to discuss his apnea and Surgery clinic to discuss his Gtube and feeds and see if he'll qualify for a gtube button even though he's so gassy. I've gotten feeds down to 40 minutes through the pump. He just has weird fussy episodes about once a day when he's gassy. Hopefully fortifying the formula less will make him more comfortable so we can get the button. He's discovered his Gtube and I'm afraid with the one we have now with the longer tubing, he'll pull it out or hurt himself. First Steps will start coming routinely to offer Early Intervention next week and we have a feeding eval set up at the Thomas Center for Down Syndrome the day before Thanksgiving. Hopefully Gabe will get something in his mouth for turkey day...even if it is Alimentum. I finally got the Panasonic HD Writer for my video camera but I have yet to figure out how to post video. There are so many cute clips since Gabe has been born. It's hard to look back and see how sick he was. He was working so hard to breathe. Here is at least a picture from today and the weekend.
Glad to hear that his heart okay and that you don't have to go back for 6 months. Ah the lasix and captopril, I remember those days. That's great that he is dropping the lasix. We do feeds over an hour at 24 cal and have lots of gass and reflux. Hopefully you can get the button. Wysdom just pulled the tube a little yesterday and then he started to cry. I am trying to keep it covered. Can't wait to see some video's of the big boy!! Oh and thanks for the info on the g tube. I ordered some of the tape that you suggested. Way to go Gabe!
ReplyDeleteGlad I could be helpful. With the Mepelex, I cut a square. Then, I cut half way into the square and wrap it around the Gtube to anchor it in place. I don't know what to do abour the gas...I think he's becoming immune to Mylicon.
ReplyDeleteSo happy for your little family! Wow- Gabe has really come a long way. How amazing. Love it. I think of him often as I'm working with little ones at my new job. The pics are great and I can't wait to see some video too.
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