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.
That is exactly what our schedule is. We can't make it to 10pm at night so we are doing 8 oz every 4 hours and make it to about 9:30pm at night and feed him a little early. I totally understand where you are coming from when you say how frustrating feeding can be when you work so hard to make some progress and then lose it so fast. Do you bolus his feeds or is he on a continuous pump?
ReplyDeleteHi there. Sorry to hear that Gabe is having some issues with feeding and weight. Wysdom is on 5 feeds now of 120mls over an hours. We are working up to 150mls so that we can get rid of the 5th feed. For us he has kept his weight up probably because he is not so mobile right now. I totally feel you on the feeding thing. I think only those with feeding issues and reflux really know how hard it is at times. For whatever reason our reflux just came back in full force this week. We are going to try a blended real food diet in the tube. Anyways best of luck with Cardiology appointment. We just had our big one a few weeks ago and I was so nervous to. I so too watch the sweating too. Praying that all is good!!!! oh and Congrats on the sitting. That is so awesome. You must be so proud. Way to go Gabe!
ReplyDeleteYou're such a mom! I'm excited he's learning about his little lip muscles and chilling on his own, playing with stuff.
ReplyDeleteKeep up the good work, you're a great mom. I hate to see you get discouraged, but he's come so far thanks to you.
Happy Mother's Day!
So sorry to hear of your frustrations. I'm no PT, GI doctor or dietician, but could the increased physical skills are amping up his need for more calorie intake? I know you fear the worst, but I'm prayer for the best. That is so great he's sitting on his own!! What a growing boy :) Hoping the added night feeding helps pump (clap) him up, and that he continues to grow in his feeding skills. It seems to easy to most of us, when we eat everday, but it really is a learned skill that he just needs more time to grasp. He'll get there. You are such an wonderful mom Michelle. Hugs and happy late mother's day to you :)
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