Gabe's 6 month post open heart surgery visit went well. The Cardiologist thought he looked great. They were so happy to see him sitting up and smiling and looking so big. They hadn't seen him since October....he's a different kid now. His liver is at the level it previously was (about 2 cm lower than usual). This could be due to his pulmonary hypertension that developed pre surgery. They expect it to resolve over time, or at least not get worse and they didn't seem concerned at all. Just listening to his heart, they don't anticipate he is having any major mitral valve leak. He will get an ECHO in early November to check everything out. If the leak is still minimal to none, they will take him off his Captopril. It was a very good visit.
On Friday, Gabe was sedated and the ENT doctor took a look in his ears. They cleaned out lots of wax and fluid and put in tubes. After the tubes were placed and he was still sedated, the Audiologist did a check and he passed the hearing test. This was a major relief that it wasn't permanent hearing loss and he does not need hearing aids. The ENT doc then did a laryngoscopy/bronchoscopy to look at Gabe's airway. Since he had a difficult extubation back in Oct., he wanted to make sure everything looked good and get an idea of the size of his airway for future reference. When it was all done, they called us to PACU. Poor Gabe was waking up and just sobbing. I snuggled him and rocked him and he eventually calmed down and woke up from the sedation. We took it easy that afternoon and evening and the weekend has gone well. It may just be my imagination, but we have noticed that Gabe is making alot more noise since getting his tubes. He's saying lots of dada's and doing this yelling thing to get our attention. It's cute for about a minute and then you just want to start telling him to use his words...oh wait, he's a baby.
Feeding is improving. He's still doing lots of tongue thrusting, but he's tolerating the feed more. We started doing overnight feeds from 10pm - 6am to make everyone's life easier and then we feed him with babyfood and thru the tube 3 times a day. This new schedule has helped with the eating by mouth and he's back up to 5-8TBSP/day.
Glad to hear the doc appointments went well! Hopefully he gets a few "mama's" out by the time I see him next!
ReplyDeleteWay to go, Gabe! Great pictures too!
ReplyDelete(and thanks for the darling note you sent Micah!)
Yah Gabe. All good news. Yeah for the heart evaluation and glad the tubes are working. Ours are clogged now so we are waiting. I like your feeding schedule. We may need to adopt something like that. Wow he really is eating well. I am guessing your are doing a continuous feed at night? If you have time I would love to hear your food schedule and amounts in more detail. I feel we are at a stand still.
ReplyDeleteGabe is so cute! It is great to hear your good news!
ReplyDeleteIn response to Sasha:
ReplyDeleteWe've been adjusting Gabe's feeding alot lately. We discovered 2 weeks ago that he needed a 5th feed per day. He didn't tolerate that well, so we started playing around with overnight feeds so he'd eat better during the day. Right now, we are doing a total of 310ml over 8 hours (from 10pm to 6am). It is going well so far. He sleeps thru it and tolerates it well. I still wake up some at night to check on him b/c I'm afraid of the tubing getting disconnected or it pulling at the Gtube site. We wrapped tape around the extension piece of his gube and put a safety pin thru the tape. We then pin it to the inside of his pajamas so if he does yank on it in the middle of the night, it tugs at the pinned pajama and not the gtube button. We are doing 155ml of formula 3 times per day after we offer him the by mouth feed. We do this at 10am, 2pm, and 6pm (give or take an hour). This has helped alot. He just ate 6.5Tbsp at dinner alone which is the best ever. We feed him by mouth for about 20 min and then give his feed over 35 min and then keep him upright for about 30 min. It's along process, but he's been tolerating it well and it's only 3 times a day which makes it doable. We are starting to look at deducting volume if he eats at least 4tbsp with a feed. Now we just need to keep working on technique and get rid of this tongue thrusting business.
Just found your blog from "Aimee's Bowl of Cherries" (Piper). My 1 year old daughter has DS too. Gabe is a cutie pie!
ReplyDeleteKelli @ http://livinglifewithes.blogspot.com