This will be short because it's been a long, trying day. It definitely went the other day.
He only drank 4 oz of milk at daycare. Ate just over 8 oz of baby food. He drank another oz for David when he got home, but would not touch another bit after that.
At dinner he ate maybe 3 crackers and a tiny sliver of a piece of cheese.
I tried. I handed him the sippy and let him have his way. He chewed on the spout for a bit while we watched Handy Manny. Nothing.
I weighed him at bedtime and he was down to 22lb 8 oz. Considering he was up to 23lb 15 oz a week ago, that made me feel like vomiting. I know a good chunk of that is dehydration, but holy crap.
After I put him to bed I was really upset. Just nervous, worried, concerned. I was fighting tears. Just about the time I had decided I maybe needed to go have a private temper tantrum in the bedroom, Becky called to check in.
Honestly, God sent her to me to keep my sane, I think. She went through some of the notes on her tube weaning, pointed out a few good things, talked through some decisions with me about what to tube tonight to get him going again. Then we gabbed a long while and I'm feeling better now.
This isn't going to be fixed in a week. When my MIL suggested such a thing was possible, I considered homicide. So maybe I need to chill the fuck out and realize it's not going to happen overnight.
Back in the NICU they used to tell us it was a roller-coaster. I keep telling people it was more like bungee jumping. Even roller coasters aren't as drastic and sudden as the NICU ride. Well, that seems to apply to tube-weaning, too. He drinks 5oz one morning and I'm sailing on wind, invincible. But we have a day like today and I can see the ground screeching towards my face at break-neck speeds and I'm just praying the cord catches.
Right now, I just have to get through each day as it comes.
Please keep praying for us. Good eating & drinking thoughts for Robbie and please- patient, faithful thoughts for me.
--Trish
Tuesday, May 4, 2010
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6 comments:
You are doing great. I gained strength from thinking about you today and stuck to my guns about my sons lunch and snack. He didn't want to eat lunch or the snack provided so he didn't eat. For supper time we did give in and get "Josh approved" meals for him since we were exhausted and just wanted to be able to put him down and relax. But I made sure to offer those choices instead of trying to get him to eat something I wanted him to first so that he didn't not eat, and get the food he wanted anyway, thus giving him a "victory." But as you were saying...baby steps.
Any exposure that Robbie gets to drinking and eating is a step in the right direction. Inch by inch or mile by mile, you get there in the end. Robbie will get there.
I think you are doing wonderfully! Will keep you in my thoughts....
You are doing wonderful! You are very brave. I would love to do this for my DD, Leah, who has been tube fed all of her life. A story very similar to Robbie's, NICU and all. Except she has a twin. (Luckily, not tube fed, but was very close to it at a few points.) I get it. And I totally relate to the bungee jumping analogy. I never thought to think of it that way. One day, I'll be brave enough to try tube weaning...
Praying for peace for you in the situation, and for willingness for Robbie to take more.
Prayers you have. Glad he did eat and drink something. Every mL counts. He'll be okay. If you have to postpone the weaning and up the tube feeds again to get his weight gained back in a couple weeks, fine, then you'll just work on it again in a bit. He'll get there, in typical Robbie style, at his own pace and time. You are a GOOD momma!!!
*hugs* hang in there, I know it's so hard. You're doing so well though.
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