Sunday, May 16, 2010

a week of good news







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.



Sunday, May 9, 2010

Friday, May 7, 2010

exhausting week

Gabe has had a good week with physical milestones and a bad week with feeding. The good news is Gabe is sitting independently and holding and playing with toys. Now for the bad news. We went to GI clinic last week. Gabe's weight had dropped from the 60th to 40th percentile and I thought GI should really be involved at this point with his feeds instead of the Gtube surgeon and cardiac dietitian. So we get there and come to find out Gabe is getting way too little calories and fluid and we need to add a fifth feed daily. I understand this and I really don't want his weight to drop anymore...problem is, Gabe does not like a fifth feed. His reflux came back, he was extremely fussy after his feed, and very sweaty. It was hard to make it thru last weekend with such an uncomfortable baby. I felt like I was stuffing him to the max. The amount he was taking by mouth had drastically gone down. It's so hard when you work so much on feeding, to feel like all your hard work is lost. I called the GI nurse on Tuesday to see if we could try anything else to help with feeding. She suggested extending the 10pm feed over most of the night. So, we are feeding him at 6am, 10am, 2pm, 6pm, and then a slow feed from 10pm-4am. He woke up alot at night this week...I guess b/c we disrupted his schedule some. I'm not really sure how the longer feed is making him less full during the day, but he is doing much better. Maybe his stomach just needed to stretch a little and get use to it. He has actually eaten a little better the past couple days. His technique is very good as he is finally figuring out that his lips can move seperate from his jaw. He is still a little fussy after his feed and he still gets a little sweaty. I'm going to keep with this schedule till Wed and see if he keeps making progress. I just keep trying to think of ways to make him continue to be motivated to take babyfood while incorporating that extra feed.
We have a Cardiology visit on Wed. This will be our 6 month post surgery follow up. I'm a little nervous. They say he is repaired and should be just fine, but the sweating with feeds and the fact that docs say his liver is on the larger side of normal makes me nervous. Sometimes being a nurse makes you worry way too much...or maybe it's just in my nature.
I'll post pictures later.