in the feeding department. Camden still wasnt tolerating his 9am feed, so we have slowed the rate and started an hour later to let his stomach have even more time to digest the continuous night feed. He hasnt vomited like he did since we have done this, so it is helping. Maybe his nissen ( surgery he had to stop things from going up the esophagus) has unwrapped completely or maybe his reflux is just getting worse? He was tolerating feeds better before, so something has changed.
:( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle.
He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.
Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle.
We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.
This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(
Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.
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As you know, feeding seems to be our biggest issue too. If you would have told me two years ago that the feeding issues would be our greatest frustration as far as her development, I would've thought you were crazy! So frustrating!
ReplyDeleteWay to go with the vent! Even though you have doctor's orders for when he should be on it, I think you are doing the right thing watching how he does and only putting him on when he needs it. That is the best way to wean him off, IMO. You're his Mama, you know him best! : )
Praying for you!
I'm glad to hear he has made progress with that vent. Feeding issues can be frustrating. Although Mikan has been tolerating his feeds, he nevertheless has made little to no progress with his oral feeds. In God's time I guess, right?
ReplyDeleteJenna
LOVE YA!!!!!!!
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