Thursday, November 13, 2008

Eat, sleep...or not...

We continue to be plagued by eating and sleeping woes.

He had a few good nights- even one where he slept 6 hours. I woke up and double checked to make sure the apnea monitor was turned on. I felt this strange sensation that I sort of remembered. You might call it...refreshed.

Of course, that hasn't lasted. The last few nights, he's woken every 2 1/2-3 1/2 hours.
And he doesn't nap. He'll doze off a time or two during the day, but it's 10 or 15 minutes at a time.

David was off for Veteran's Day yesterday so I went and finally had my gallbladder scanned. (No results yet.) I came home after being gone about 4 1/2 hours and found a defeated lump of a man that used to be my husband.

He must have said at least 5 times during the rest of the day "but he only slept for 10 minutes." I kept replying "Yes, honey. I know. This is how it is EVERY day." He'd really never been alone with Robbie more than an hour or two at a time. And usually I'd feed, change and settle him before I left. No such luck yesterday. It was morning. Peak Robbie time.

Of course, if nothing else, I think it gave David a little more respect for what my days are like.

Sleeping I can mostly manage. If he sleeps, I sleep and we do okayish.

Eating, however, is going to be my undoing.

We finally got his Prevacid filled on Saturday. (Long story. I had to pull out Bitchy Trish at the pharmacy. So much so that the people next to me actually started cheering me on. But it's filled.) Saturday afternoon and Sunday, he ate like a champ. I was concocting a "Praise God for Prevacid" letter in my head. Then came Monday. So much for my miracle drug.

Back to half feedings, flailing, crying, face-hiding, etc.

I just don't know what else to do. He gets some type of med at every feeding. Carefate, Mylanta or prevacid. It doesn't seem to matter.

If I can catch him sleeping and get a bottle in his mouth, he eats fairly well. But again- he doesn't sleep. That's hard to do.

I'd say an average day, he sleeps a total of about 10 hours. Which really isn't enough for a baby of his age. And of course, that's not all at once, which makes it worse.

And eating- I'm lucky if I get 1 MAYBE 2 full feedings into him a day. The rest are anywhere from 1/2-3/4. On a "good" day, I can wait an hour and feed him what he didn't take at the regular feeding time. At least then he gets the calories.

But a day like today- it didn't matter. He'd take a half a feeding and then refuse to eat again for 3 hours.

I'm already dreading next week's weight check. Now, the worst thing they'll do is probably add fortifier back to his breastmilk again. It's not the end of the world. But formula is a pain in the ass for a number of reasons.

First of all- it makes his reflux worse.
Second of all- it's expensive
Thirdly- even if he WILL nurse, I feel like I can't let him because he has to have the formula.
Lastly- if it's mixed in breastmilk, it shortens the breastmilk's life expectancy. Whereas now if he doesn't finish a bottle, at least I can use that extra half ounce or ounce next time. I'm not wasting my hard-earned milk. But with formula, once it's mixed and he's eaten from it, it's done.

We'll manage if we have to. I know we will. But damn it... I'm tired of reflux!

And he had a surgery that was SUPPOSED to stop this. And now I just wonder if all the stomach surgery they did just made him more uncomfortable.

I really wonder about the G Tube. The wound where it was seems to be healed- it's not leaking, anyway. But it remains really dimpled in and feels a little harder under his skin. I'm sure there is scar tissue there.

Now, I'm sure as he gets older and bigger, that will be less of a big deal. But for now, he's a little guy who had a big hole in his stomach. It sucks.

In any case, we fight on.

If you could throw some more moose on the fire, I'd appreciate it. And maybe something that sleeps well, too.

You'll be handsomely rewarded with more pictures.



Camille said...

Hi there,
I've been a lurker for awhile but never commented. Congrats on your new bundle :) Our son also had a lot of feeding issues as a baby. He would scream (not cry, I kept having to explain that over and over to doctors) while trying to eat and would arch his back and throw himself backwards. It was incredibly frustrating. He was on Zantac for 18 months, I think. It's all kind of a blur now (he's 3). However, one thing we did try was soy formula. I know you are breastfeeding, that's what I was trying to do as well, but it seemed like he was having a reflux issue combined with lactose intolerance. It totally sucked. The soy formula did help though...we ended up having to make cocktails for him becuase he hated the flavor of soy so we added pedialyte (orange and grape flavors) and rice cereal to thicken it up. Anyway, if you do end up going back to supplementing with some formula, you might want to give soy a shot. I feel for where you are right now. It might take awhile, but it will get better.

Tom & Shannon said...

tossing a sloth on the fires!!!

Mrs. Spit said...

What about a feeding consultant? I was reading some books about preemies, and they suggested that some wee ones develop an oral aversion from being on a vent and the other things that get done to them. If you can sneak the bottle in when he's sleeping, I wonder if it an understandable objection to having things in his mouth?

Trish said...

Camille- thanks for the suggestion. We actually tried soy formulas back when we were supplementing before- didn't make much difference.
I'm on a low dairy diet now, (God I miss milk!) so I don't think it's that.

Mrs. Spit- he doesn't seem to have any oral aversion (surprisingly!) as even when he won't take a bottle, he'll merrily suck on a pacifier once he is made aware there is no milk coming out of it.
We're supposed to have an OT coming out to work on feeding issues anyway.. just waiting on a call back about starting it now.
I should put in a follow up call today and see what's going on.

Amy said...

Hope the OT's able to give you some good help. Sigh. 10 hours is better than before, right? Wasn't it just 6 hours in 24 for a while? Still not enough of course, but is there some progress?
Still praying! And I like Shannon's sloth suggestion, lol.

Kim said...

You're really making me wonder if SOMEHOW, SOME WAY, our kids are related. I know all too well what you're going through. If you don't try that special needs bottle, I'm going to whack you over the head with one. It really worked wonders for M... given, it was short-lived, but I think it had a lot more to do with other issues than the nipple itself. 'Cuz the nipple is pretty amazing. ASK FOR ONE! If we didn't only have two, I would send you one of ours to try.

Amelia Sprout said...

Prevacid works worse right with a meal, check the warnings, but it is better before or after. There are two parts to the drug, one is a basic antacid that works right away, the other is the acid blocker. The acid blocker part can take up to a week to really kick in. Give it some time before you give up.

Me said...

I noticed other's mentioning soy... if that doesn't work you might also try rice formula. My sis had to use that b/c my nephew had issues with both lactose and soy.

I sure wish this was easier for you honey. :(

Lorraine said...

Bats sleep about 20 hours a day, so maybe a bat-moose combo would do the trick?

Trying times, to be sure. It WILL get better - my non-sleeper became a champion 11-hour-per-night snoozer when she started pre-school. I thought it would never happen - and she is still a night owl, but the good thing is she never gets cranky and annoying when we're out at a play or a party. She can stay up past bedtime NO problem, which is probably not enough to cling to now - but it is nice later!

I'm glad David got a chance to experience the real deal, too! It really helps when you feel like it's not just you, doesn't it?

AngelsAmid said...

I'll throw some moose to the fire- and any animal that'll help him sleep and eat for you.... (hugs)

Kierstin said...

have not had a chance to post here or on the board but wanted to say I am so sorry that you keep having to deal with these issues. I was hoping things would get better. I think of you often and say little prayers but do not want to call in case you are getting some precious sleep. I hope one day to be able to catch up with you and our kids get to hang out.

Wanted to let you know I have not forgotten about you and pray things improve.

Heidi said...

I am new to your blog and I have no advice, but wanted to offer hugs to you and Robbie. You sound like a wonderful mother, and I can't imagine what you're going through. I know I'm exhausted and I don't have any of the worry or stress that you do. Best wishes there Mama!

Rxgoddess said...

Have you tried all the tricks in arsenal like a swing, white noise machine, swaddling in a Miracle Blanket, wearing hom in a sling? Or a combo of the above? How frustrating when the little buggers won't sleep and they *need* to so badly...

Steph B said...

I don't know if you have tried this yet, but a LOT of people have told us to try the baby lotion with lavendar in it to help with sleeping. Our son has decided that he won't sleep for more that 30 minutes unless he is touching one of us... We have tried all kinds of things and this is our next move. I will let you know if it works...