Eat, sleep...or not...

We continue to be plagued by eating and sleeping woes.

Sleeping:
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.

--Trish

For a Friend

I just wanted to take a moment to ask everyone to visit Matt's Entourage. Matt's wife is a friend.

After trying to conceive for some time, they were finally successful in getting pregnant through IVF.

Very shortly after they found out their joyful news, Matt became very ill. After extensive tests, they discovered he has brain cancer. The outlook is grim. He's only 31.

If you are local and like trivia, some neighbors are hosting a trivia night. Or if you'd like to donate, the information is on the web page.

If you're unable to do either of those things, I ask that you please pray for them.

Thanks,

Trish

Stomach update

Robbie had a follow up with the GI specialist today.

We actually saw the nurse practitioner. Turns out she has twins who were 26 weekers. We bonded. She was lovely.

The bad part is that someone has clearly not been keeping their moose fires stoked. He only gained 6oz in 16 days. Not enough. Ideal would be an ounce/day. Acceptable is 1/2 oz/day. We didn't get either of those. It's not HORRIBLE weight gain, but not good.

I guarantee he's not eating enough. He should be eating at least 60cc at every feeding. He generally gets to about 45 and just gives up. He's in pain. Flailing, crying, back arching, turning away from the bottle. The effing reflux is killing us.

What I've been doing is feeding him the 40 or 45 he'll take, then in an hour, after he's calmed down and digested a bit, feeding him the rest as long as he's awake enough to eat it. He's been eating 8 or 9 times/day. When it takes an hour to get a full feeding into him.... well.... it feels like ALL I do is feed him.

Add that to the fact that about once per week he throws up a little blood and the NP was sympathetic.

She completely changed his meds.

Instead of Mylanta, he'll now get a prescription version called carafate. Instead of simply coating, the new drug binds to the esophagus to keep it protected.

Instead of Pepcid, she prescribed Prevacid.

Unfortunately, my insurance won't cover formulary Prevacid. We're currently on hold waiting to find out if they want to change him to Prilosec or if the doctor can get the insurance to okay the Prevacid. Fun times with health insurance.

Hopefully when it gets straightened out, it does the trick.

As much as it's become standard, it's exhausting to have to fight through every feeding. To have to fight for every ounce.

It seems especially unfair to him to be in so much pain so often when he's already been through so much.

And I worry what his stomach history will mean to his future. People keep saying that most babies outgrow it by 3 months. Even more at 6. At the absolute outset- 1 year. He's 9 weeks adjusted now. I'd love for this to be the tail end of it, but I'm scared. Robbie has proven time and again that he does EVERYTHING on his own schedule.

Speaking of which, his G tube site did finally heel. At the 2 week mark, when it should have been healed, it was leaking worse than ever. But then it just stopped. Over the next week there was an occasional bit of crustiness, but that was it. But it's been fine ever since. He just needed a little bit of extra time. Like EVERYTHING ELSE.

It seems like we deserve SOMETHING to happen on time, right?

And of course, then I feel ungrateful. We've been so blessed.

The NP's son had a brain bleed, a perforated bowel, more than 4 months in the NICU. These are things we escaped. I know we've been so lucky. And reflux is something that probably would have gotten us even if he'd been full term.

But damn, I'm tired.

--Trish

Thinking of you...

I've been trying to write a post for an hour.

I keep typing and erasing.

In the end, I have this to say.

To all of those out there who have lost their babies- I'm so sorry.

I asked "Why me" so many times in the last years. Between infertility and miscarriage and pre-eclampsia and premature birth, WHY ME..

Today I'm just having a day where I keep thinking "Why them?"

So many people out there who truly deserve to be parents. Who would be incredible mothers and fathers. Their children have been stolen from them and I don't know why.

Some of my most loyal readers are among them. I wish I could take away the pain.

You're all in my prayers.

--Trish

New Looks

The blog and Robbie both got a new look today!

I changed my colors to black and red quite some time ago. I felt like it represented my black heart and interminable periods when we were TTC.

Well, I'm still black hearted. And I still hate my periods. (In case you were wondering, they returned at 8 weeks post partum and have been as irregular as hell since then.) But my heart is a lot prettier than it used to be since it now houses love for Robbie.

So I thought I'd pretty the place up a bit. For those looking for a new blog background, I really like this place. You can change it w/o losing all your widgets. SCORE!

On to the good stuff.

Robbie actually ended up with 2 Halloween outfits. While he was still in the NICU and teeny tiny, my dad showed up with a cowboy outfit.

He showed up a couple of weeks ago with a pumpkin pram.

So we had two days of cuteness!

Yesterday he was a pumpkin and tonight he was a very, very sleepy cowboy.



On the front porch



In Mommy's chair



Boo!



Every good cowboy has a horse and a few cows!





Pardon how rough mommy looks. In case you haven't heard, I don't sleep at night.