Saturday, April 4, 2009

Vent

My word of the day is frustration.

Seriously, how an 11 pound baby can frustrate me so much is truly amazing.

He's so damned cute. And happy and smiley and engaging and wonderful.

And then it's time to eat and it all goes to hell.

His eating is slightly better than last weekend. Since I've switched him back to plain breast milk again, he'll once again eat an ounce or an ounce and a half most of the time as opposed to the 5cc at a time of the Elecare fortified stuff. But he's still only taking maybe 5 oz a day by mouth. FIVE OUNCES A DAY.

That's pathetic. If we didn't have the tube, he'd DIE. That's insane.

Then there are the solids. Before the hospitalization for FTT he was doing pretty well with the solids. Not enough to make up for milk, but it was still a pretty big bonus and he'd eat almost anything.

Now he won't. I'm literally struggling to get 3 spoons of ANYTHING in his mouth. He purses his lips up and refuses to open them. If I try to get a little aggressive and open his lips myself, he just spits back anything I put in there.

Now, he thinks the spoon is great fun. He reaches for it constantly. I let him have it, thinking maybe he'd stick it in his mouth. He finds it's much more fun to shake it and bang it on his chair or leg. So we end up with sweet potatoes everything except on his tongue.

Today I tried some finger food. At first it went great. He grabbed the wagon wheel and it went straight in the mouth. And it stayed there. He chewed and chewed and licked and chewed. (See right) For just a minute I thought EUREKA! I mean, maybe he just wants to feed himself. Eventually he managed to break off a little piece of the wagon wheel and seemed to be chewing on it.

And then his spit it out.

I scooped it up with my finger and plugged it back in.

And he spit it out again.

I tried again.

We tried this 4 times or so before he started to get agitated. "STOP PUTTING THAT IN MY MOUTH, MOMMY."

I tried the baby food again. I tried dipping my finger and let him suck on it. That went okayish, but when I tried to get the spoon involved again or tried to put a little more on my finger to give to him, he'd refuse or spit it back out.

I KNOW he knows how to swallow it. He was doing great at this 2 months ago.

Even if I can trick him into opening his mouth (by making him smile) he just spits it all back out.

By the time we were both ready to cry from frustration, I just picked everything up and put it away. The minute I picked everything up, he just beamed a smile at me. He seemed so genuinely happy.

I tried to vent my frustration to my husband who just doesn't get it. I invited him to try to feed him any time he wants, but I doubt that'll happen any time soon. More frustration.

For what it's worth, they did get us worked sooner for the feeding eval. It's next Monday the 13th.

I wish I had high hopes for it. I've talked to too many other micropreemie moms who've been down this road and there just aren't any easy answers. Hell, there aren't any difficult answers.

It's all trial and error and time. Many of them are not seeing improvements until the kids are much, much older- sometimes 5 or 6 years old.

Thinking that this kind of frustration could continue for years more just makes me want to cry or scream or scream and cry.

I WANT THE BOY TO EAT.

--Trish


P.S. Seriously, go look at that picture again. How freakin' adorable is he? It just doesn't seem possible something as beautiful as he is could be so frustrating!

21 comments:

Ariella said...

He is such a little doll Trish! I love that pick of him. It must be so frustrating for you with the hubby. I am sorry he isn't a better help.

Note to Robbie:
Robbie, please stop putting your mom through hell with not eating. She loves you so much and only wants to see you happy and thriving. Please take some nice big bites for her your next meal.

O.S.B. said...

He really is so adorable, I mean like super super cute, not just the way all babies are cute, but like "Whoa, that kid is CUTE!" cute.

Wish there was an answer, any answer would be nice. Hopefully things will go well on the 13th.

Laura said...

I feel your pain. At least he's still eating the 5oz by mouth. And that's a really big deal because he's willing to do that much. And kudos for getting him to eat the cracker. One day at a time. And it's okay to just stop after a little bit if he doesn't want to do it. Forcing them just teaches them to lock those lips even tighter. Hang in there, we'll get through it.

Melanie said...

Refresh my memory:
Does he have reflux or possibly even GERD? That's the problems we had with ours when she was four days old until they put her on Prevacid about 6 weeks ago. While only on the week Zantac, her tummy would hurt so she'd refuse to eat, or if she did eat it would always come back up via projectile vomit or spit-up.

Maybe he's got something similar? Prevacid is a miracle, and all the moms I have read about say only good things.


If he doesn't have reflux, then this comment was pointless. Lol.


I am sorry you're having such a problem and I understand how frustrating it is when your baby won't eat.

And, he is cute!

Trish said...

Melanie- he does have reflux. He was born with a hiatal hernia.
basically his diaphragm did not grow properly when he was developing. His stomach protruded up into his esophagus. It's very painful.

It's been surgically repaired twice now (once being a month ago) and yes, he's on prevacid solutabs.

The solutabs helped IMMENSELY with the pain.. he doesn't act uncomfortable at all.. But I think his stomach is just so messed up that even when he's not in pain, he just doesn't feel GOOD.

Probably the ONLY thing that is going to help that is to grow new tissue.. which is only going to happen if he grows, which is just not happening.

And I think the months and months and months of being in pain ruined the notion of eating for him. The damage was both physical and psychological. The physical damage has been fixed as best it can.. but I think the psychological damage may be permanent. :(

Alex said...

Have you tried a baby safe feeder? Those mesh bags with handles they can hold and gum on? If he likes the spoon so much he might like to gnaw on it. Might accidently get some food into him even!!

And yes...he is awfully adorable!!

Melanie said...

Duh! *Hits self on head* I can't believe I forgot that! I plead the "new momma half brain" syndrome. I used to have the best memory but out came baby and so did my memory.

I remember now. I remember telling you how I had one and know how badly they suck.

You're right, it is probably psychological which hopefully the feeding clinic can help you with.

*hugs* Sorry for forgetting.

Nix said...

Trish, you are right he is gorgeous!
I'm so sorry he is playing up again, I can only say hang in there and thank goodness you have the G tube now. I really do hope the feeding clinic has some bright ideas how you can get around this.
(Hugs) Nikki

Alice said...

(((Trish)))

I'm with you - he's one heck of a cutie patootie!

I can't imagine what you go through - or Robbie for that matter.

Hang in there ... praying for a miracle!!!

Anonymous said...

I read your blog all the time but I don't often make comments, however I thought I would give it a shot. I also don't often read your comments so I'm not sure if this has been said or not. And honestly, it may be WAY out in left field but here goes... I competitively train my dog. He has been in classes for the last 5 years. And I know dogs are WAY different than kids but there are some striking resemblences... I have noticed when I over do something with him, he just quits on me. I chuck forward, get frustrated and "make" him do it. But that only makes it worse and makes him hate what we are doing. He isn't happy and often completely avoids what I'm really asking him to do. The funny part is, if we take a break. Whether it be a 2wk, or a 4wk break. By the time we get back into it, it's almost like night and day. Where he just wasn't working for me before, he now all of a sudden has it, and it's perfect!

It's one step forward, 2 steps back, take some time off and its 3 steps forward! Honestly I'm not sure if the same would hold true for baby's or, like I said before, if you even tried taking a break before (or if it's even recommended by the specialists...))

Either way I hope Robbie progresses and eats better for you.

PS: the picture of him in his high chair is adorable!! :)

Anonymous said...

Trish-
There was a phase where my daughter wouldn't eat when we tried to feed her, so we gave her her own plastic baby spoon to hold onto. As, long as she had that spoon in her hand, she would let us feed her. She had loved eating her solids then one day she just wouldn't take them. I think it was a gradual transition to self feeding. Mabye this might work with Robbie?

Valerie said...

Aww Trish. I wish I could do something to help you out. Sending prayers that Robbie learns to EAT!

camille said...

He is beautiful.
I'm so sorry you are still dealing with this. I can't imagine how frustrating this is day after day. I'm glad that appt was moved up and really hope that someone can actually HELP!!!

Adriane said...

He is so beautiful! I would be equally frustrated with the feeding/non-eating. I literally racked my brain thinking of other ways I would try, and I can't think of anything. You're doing everything I could think of and then some. I am so glad the NICU people have a sense of urgency about it and are getting you in sooner.

My Gracie wasn't taking her bottle well over the weekend (teething, we think) and I sooooo thought of you and Robbie. I can't imagine how hard it is for you.

Anonymous said...

I'm delurking to say that Robbie is amazingly adorable. What a handsome boy!

I'm so sorry about the eating struggles and am sending good thoughts to you and Robbie. You are an amazing mom.

Melissa

Heidi said...

He's adorable!!! You must be so proud!

As always, sending hugs.

Danielle said...

Hey Trish,
Mikayla is very picky and I have to force her to eat too. But nearly has hard you have it but it is frustrating, so I completely understand she is only 16 pounds and 7 ozs for almost 10 months. I know the pursed lips deal we have that every meal too.
Have you tried puffs instead of the wagon weals. She loves puffs and cherrios they desolve faster then the wafon weals too. She eats small pieces of bananas real well. She ate some spaghetti the other day. See if you can introduce things like that. It really is trial and error though but I would keep playing with different finger foods.
Robbie eat for your MOMMY!

MegGary said...

Trish you know I love that little boy. Everytime I see his picture I'm tempted to fly out to you so I can kiss & snuggle him. lol

With the eating/drinking. What about introducing the sippy cup? Maybe if the BM is introduced in a different object he might take to it. Just a thought.

I haven't had your struggles but Sophie has been a pain to feed since day one. At her age she should be eating up to 24oz a day & if I get 16 in her I'm lucky. Most days it's 10. She'll eat solids but not a lot. She does love her puffs & cheerios though. She goes nuts for them. See if Robbie would like those. It took awhile but Sophie grabs them by the handfull now when she sees them.

Robbie, eat for your mommy. She is worried about you & needs you to eat.

Trish said...

Thanks for all the suggestions.
I gave him puffs and wagon wheels every night at dinner. They're his finger food for the day. He'll gnaw on the wagon wheel, he's not so interested in the puffs. I can put them in his mouth and depending on his mood, he'll either spit them out immediately or look sour but finally gum them down. I've gotten as many as 4 into him before he started gagging.

I think I will try the spaghetti. He might like to dig his hands in that and everything goes straight to the mouth, so maybe he'd accidentally eat something. It's worth a try.

I managed to get a little squash into today just by dipping my finger in and letting him suck my finger. He got pretty irritated by the end.. I don't think he appreciated the flavored finger, but I got a little into him, at least.

Amy said...

Oh gosh, how thoroughly exasperating ... 5 ounces a day, that must be so frustrating. and the idea of that possibly going on for years makes even me want to cry! :( Praying that the eval really will help and that things will improve. (((HUGS))) You really are doing an amazing job, Trish.

Amy said...

And yes, he is BEAUTIFUL!!!