Saturday, December 13, 2008

You're invited

You're invited to a party.
My party.

My pity party.

It's been a really rough week.
The boy just doesn't eat. We started OT this week and unfortunately, it's not a magic answer.

As much as I hated that fucking G tube, I've found myself wishing for it back. Usually he eats well at night but shitty all day.

Well, last night he even ate poorly all night. which means he won't even come close to his goal intake for the day.

He does this nom-nom-nom thing where he sort of gums at the bottle but doesn't actually suck on it. So he pretty much gets what can trick out of the nipple by gravity.

I've tried changing nipples, bottles, nursing- nothing works. When my boob touches his face, he screams. He hasn't nursed since November 25th.

I weighed him last night and after a couple of weeks of good weight gain, he's only gained 4oz in the last 8 days. We're back to suckage again. (8lb 10 oz) for the record.

You can see in the pictures with Santa how much smaller he is than the babies who started out in his realm. He's tiny.

I don't know what else to do. I'm the only person who can get him to eat, and now even I'M failing.

I've even tried not fighting with him. When he gets hungry enough, he'll eat, right? But no.. you take the bottle away and he cries- he's hungry! But he won't suck on it!


I don't know if it's an oral aversion or reflux or what. He had a few days that he seemed to be in pain again, so we upped his meds again and it seems to have helped. At least he's stopped screaming for an hour after every meal.


The thing is- he seems HAPPY. Everything else is great. He's full of smiles and laughs. He's really found his hands. Oh.. he LOVES to suck on those hands! If I could get his hands to squirt milk, we'd be in great shape.

I can't tell you how frustrating it is to spend 90 minutes trying to force 2 oz of milk into him, set him down and 12 seconds later, his hands are in his mouth and all you hear is slurp-slurp-slurp.

The other day I heard this loud yell and glanced over and he'd flung his entire body upward to whack at a mobile toy on his swing that was out of reach. He's determined. And strong.

But he's SMALL. Small small small.

Some days it feels like all I do is feed him. Or try to feed him.
I'll spend up to 2 hours trying to get SOMETHING in him.. then take a break to pump some more.. then start over again.

Last night I reached empty on the patience meter. I tried to get David to take over but it just didn't happen. I ended up leaving Robbie in his swing to go take a shower (the only place of quiet in the house.) and when I got out, he was still screaming. David couldn't be bothered to handle him for TEN FUCKING MINUTES.

I toyed with the idea of just leaving. But where does a woman with no income and a baby with a compromised immune system go at 9pm?

Apparently she goes to the recliner and pats and rocks.

Oh, and to add to my woes, I'm waiting to find out if I'm laid off or not.

I work for the AT&T. You may have heard that they're cutting 4% of jobs. That includes 5 people in my office. The 5 people with the lowest seniority.

I'm losing seniority because I'm on a leave of absence (not considered maternity leave, so it's not protected.) so I may be one of the 5. All week has been at least daily phone calls from the union trying to determine if I'm going or not.

It's not the end of the world. Last day on payroll would be March 16th, I'd get 12 weeks of severance and 6 months of benefits- we'd manage. But seriously.. it's just one. more. thing.

Oh yes, and let's see, there was the $1300 in taxes that I owed on a previous car from 2006 that I didn't know about until last week. That was fun, too.

I'm just tired. I'm tired of worrying about everything.

I just want Robbie to be normal. Average. A C student is fine with me.

But I just need him to EAT. Babies are supposed to EAT. And mine doesn't.

If you could please just say some prayers for Robbie to eat, I'd appreciate it.

I'll leave you with a short video of what our feeding sessions look like.


--Trish

15 comments:

Osh said...

we all want our children to be normal

hugs

Valerie said...

Oh Trish, I'm sorry you're having such a rough time. I'll gladly send you my phone number if it will help to have someone to talk to when times get rough.

Val

Newt said...

Awww, hell. I was hoping things would be better. There should be some kind of rule that if your child needs extra care, then nothing else is allowed to put stress on you. David and AT&T apparently didn't get the memo.

I wish I had some magical practical advice for getting Robbie to eat more, but I don't know anything about babies yet. I hope someone else on the magical internet can do better.

Thinking of you, Trish.

Cassie said...

Eat for mommy Robbie!

Have you trued just using a regular cup. My sister was in the hospital when she was very young and she would not take a bottle so my mom fed her via a cup. It is atleast worth the try right. GL!

Tom & Shannon said...

oh, trish...i'm sorry this is so tough. poor little guy's probably emotionally scarred from the reflux. that's got to be so difficult :( *hugs*

Mrs. Spit said...

Sigh.

I suspect it's just a case of him associating things in his mouth with hurting.

Argh. I'm sorry sweetie. You are NOT failing. You are doing the best you can.

I'd second that - what about the cup?

And can you go to the g-tube? I know it's a big step back, but maybe if he's getting the calories and isn't so hungry, he can grow into the idea that eating isn't horrible.

Alice said...

(((Trish)))

I'm so very sorry to read this update. I watched your video and girl, I have no advice for you.

I'm with Mrs. Spit - maybe he's associating his mouth with pain.

I know my sister's second child would only take milk direct from the source - which meant babysitting was rough. We figured out a way to use a straw so that there was so flowage.

Sending you lots and lots of hugs and encouragement.

You're such an awesome mom!!!

Fertilized said...

gosh, trish I am so sorry!

Trish said...

Mrs. Spit-
The G Tube was refused, so we can't go back to it unless he has surgery and has another one put in.

Cassie et al:
I've tried dropper feeding him and he just chokes.

AngelsAmid said...

aww :( the video made me want to cry :( poor baby...

Aidan's mom said...

Take this for what it is worth, which may be nothing, but this is exactly the kind of thing that I saw early in Aidan but didn't do much about. Aidan didn't have a problem gaining weight, but it did take and ungodly amount of time to feed him. When we started solids it was then that I really knew he had some oral aversions.

I am not sure if Robbie is too young for a feeding evaluation, but you may want to think about it.

I started Aidan in feeding therapy at about 13 months actual/10 months adjusted and he was done and doing a TON better in about 3 months.

Just a thought. Btw, if nobody has told you yet, feeding issues are rampant in preemies. Especially those with prolonged ventilation. I am on two preemie boards and seriously almost half of the posts in any given month have something to do with lack of weight gain or feeding issues in general.

Feel free to contact me if you want to chat more about this.

Maureen said...

I'm so sorry. Both of my boys are tiny compared to their peers. After much anguish, testing and anxiety with my first, it is decided it is normal for them (both float some where off the bottom of the chart for weight; the older one is now just hitting the bottom of the chart, he is 2.5 years old). However my boys don't have oral aversions, they are just small.

Have you gone to a clinic that specializes in feeding? Premies are famous for having them, and having them linger for a long time (not to depress you, but more to encourage to be more proactive (which you are) to do something sooner than later). Sometimes something that seems like a step backwards is the only way to go forwards in the long run.

Could you attach a SNS (supplemental nursing system) to his hands/fist?

Do you "play" around his mouth not around feeding times? Do something enjoyable around his mouth (or his cheeks if anything by his mouth sets him off) and make it not about feeding and something enjoyable... maybe he will get the point that things by/in mouth does not equal bad/pain.

camille said...

Oh my gosh, sooo frustrating. I'm so sorry you are having to deal with that. It certainly does look like he wants to eat but you can definitely see he's not sealing onto the nipple. I wonder what would happen if you tried feeding him with a medicine dropper. I know that doesn't help the sucking issue but if you could just squirt it right in there at least you would know he's getting at least 2 oz at a time.

Ok I just read your comment about trying dropper feeding and him choking. This would also take forever, but there are pacifier medicine dispensers out there, you can find them at Walgree.ns and if he'll suck on a pacifier, possibly he would suck milk out of that. Seriously though, I know that would take forever. I guess my only other idea would be when he is gumming the nipple is for you to manually squeeze it so some is coming out in his mouth. I'm so sorry you are dealing with this. I can't imagine how tired you are.

What does the pediatrician say?

All About Amelia said...

i was also going to ask what your ped says? have they seen him eat? have you tried chin and cheek support to help him close his mouth around the nipple? we do that at work with the preemies and it is so helpful. also folding wash cloths to put under their chins to make the room for jaw movement less can help. they need to use thier fat pas in their cheeks to suck, not move their mouths so stopping the chin movements may help. if you need me to come by one day without my kids to show you i can. i hope dave steps up to the plate soon and helps you out more. i know there is only so much one person can take before they explode. we will say and ectra prayer for robbie and your family.

Anonymous said...

Hi Trish! So sorry you're going through this. Your baby won't eat and mine won't poop, they're quite a pair! This may be beyond obvious to you, but the hands thing made me think of it. I'm having to feed my guy while he's swaddled lately because if I don't both his hands get in there and interfere. Might help reduce some of the extra stimulation so Robbie can concentrate on the sucking. Good luck!

-dr.girlfriend