Friday, January 23, 2009

it continues

Well, we've had caloric success with the olive oil. I hesitate to say actual success because he's eating his bottles worse than ever. And somehow pumping my kid full of pure fat doesn't really seem SUCCESSFUL.

I'm planning to call today to see if I can get a referral to a nutritionist.

Based on his weight, he should be eating about 20oz of milk/day. He's eating closer to 13. And that's INCLUDING the milk that gets mixed into his solid foods each day (which is usually an extra 2 or 3oz.) Perhaps once or twice a day he'll take more than one ounce at a time. Even that ounce is taken in spurts. Suck-suck-suck pull away, regroup suck-suck suck. After no more than 10 minutes, he just gives up and either locks his lips up or just flails and turns his head.

Once last night (about 3am) he took 2 oz in about a half hour and it felt like a miracle.

He ate 13 times yesterday. The GI doctor says he eats such small amounts because I feed him too often. They don't seem to understand that at midnight he took 1/3 of an ounce and went back to sleep. At 1:30 he took another 1/3 of an ounce and did the same thing. Woke up at 2 and took just under an ounce. Then slept another 3 1/2 hours and still only took a little under an ounce. Two hours after that, another 2/3 of an ounce. I'll feed him what and when he'll eat. But how do I make a kid who's eating so little go a full 3 hours w/o eating again?

All that does is means he's eating the same amount less often. It just leads to crying because he's starving but STILL won't eat because he's awake.

He has managed to gain a couple of ounces in the last day. He's up to about 9lb 13oz now. Hard to say for sure from last night's weight because he'd just eaten some cereal and weighed at 9.15. But that doesn't count.

But how good is it for him to have nothing but fat? He needs NUTRITION not calories.

I'm so sick of it. I dread every meal. Even the rare success gives only a few minutes of celebration because I'm just looking ahead to the next meal and wondering if he'll eat again.

I'm struggling to pump in between all of his snacking. So I feed him 12x a day and I pump 6x a day. That's 18 times a day I'm focused on food for my son. I'm obsessed out of necessity. (And please don't suggest I give up pumping. We still haven't found a formula that doesn't make him scream in agony (including non dairy stuff) and the breastmilk at least protects his brain development. Pumping sucks, but at least it's SOMETHING I can do for him.)

The mere concept that people out there just feed their babies just amazes me. Like.. you just make a bottle or pull out a boob and give it to them and they EAT IT? It's like a foreign language. I can't even imagine.

I can't imagine a life where everything doesn't focus around what he has or (more often) hasn't eaten.

Normal people say "I hope you have a good day today!" but in my life people say "I hope he eats today!" because those are the same thing.

And when does it end? Will he wake up next week and sudden decide this food thing is alright after all?

Most of the people I've come across who had similar problems didn't have their kids grow out of it until after they were 1. Robbie's not even 8 months yet. So I can face another 3..4..6 months of this?

I'm just about ready for a padded room NOW.

Every parent just wants their kid to be normal, healthy and successful. I just want my kid to accept the will to survive. The notion that given a choice, he'd STARVE breaks my heart.

You'd think with all of this, he'd be miserable. But he's not. He's a happy kid. Smiles a lot. Plays. Snuggles. Been "talking" more and more. Has a cute little double chin and fat rolls on his legs. He's working really hard on trying to roll from his back to his tummy. (Still has no interest in the opposite AT ALL.)

He just doesn't EAT. Seems so simple. But it's not.

It's the most complicated thing in the world.



Anonymous said...

He will NOT starve himself. I agree that you need to go longer between feedings. Just try ONE day of feeding him every 3 to 3.5 hours. He will not starve!

Anonymous said...

I also would take one weekend,just two days, and try only feeding him every 3 hours. Pick a weekend when your husband will be around (or enlist a friend or family member) to help with your sanity if he screams and screams in between. Keep a journal for the weekedn and maybe video tape some feedings, that way when you do meet with a nutritionist or the gi you can take in your journal or tapes and show them what is not working. It's worth a try and if it doesn't work at least you know what doesn't work! good luck!

Rachel said...

Argh - even I am annoyed by the anonymous post above! It's amazing what people who have never meet your baby will advise you to do.

I hate to give a suggestion myself since I know that you have already spent months trying to puzzle your way out of this conundrum, but I was wondering if you have considered applying to a milk bank for a little extra milk? It might make you feel better to have a small stash on reserves and give you a few opportunities to cut back on pumping when you just need a break, even though your milk is obviously best for Robbie. My -very minimal- understanding is that the milk banks prioritize babies like Robbie - premies who just need a little extra help to get through (I've been trying to find someplace to donate extra milk, but unfortunately I'm in NYC). I was just trying to think of anything that might give you a break in your schedule.

We're all here cheering for Robbie and I'm awed by your dedication to this schedule. The more I whine about having to wake up to feed a my 6-week old, the more I am amazed at your schedule and how you manage to keep going far longer than any of us expect to do all-night feedings.

Mrs. Spit said...

Aww Trish, hugs.

Alice said...

To the previous anonymous posters: um, he IS starving. DUH! That's what she's talking about!

To Trish: girl, you have all my sympathies. Bubba Joe also did not tolerate any formula and did best with mama's milk. Hang in there. And vent when you need to. I'm here for you!


Anonymous said...

I am sure you have tried this but have you put cereal in his bottles since he tolerates it so well. My baby does not take plain breast milk in a bottle the way she does when I mix cereal in it.
I admire you for being such a strong mother after everything you have been through because I would already be in the padded room months ago. Someday soon I hope you will be looking back at his feeding problems as distant memories. Hang in there, Robbie is lucky to have one heck of a Mom.

Trish said...

Rachel- I actually have about 200oz in the freezer so if it comes down to it, I'm okay there. It's more about keeping my supply up that actually actively providing for him (if that makes sense.)
At this point, I'm hoping to make it til he's a year actual pumping.. then use my frozen stash to make it til he's a year adjusted. But we'll see what happens.

Anonymous 1 & 2. I appreciate the thought, but I HAVE tried it. Most of the day he'll just contentedly go 4, 5, 6 hours w/o eating at all. (Because timing things at exactly 3 hours usually ends up meaning he's awake and just won't eat.) At night, he just screams and screams and screams.

A toddler or older child won't starve. A baby will. There are brain differences that for some reason will let a baby ignore hunger in order to avoid pain.

Anonymous #3- I haven't. I asked the GI doc about it and she said it was pointless because breastmilk breaks down the bonds in cereal. Though I might try it anyway just to see what happens.

Nicky said...

I'm sure this is also something that you've already tried, but I'll throw it out there just in case. Apologies if it's obvious and you've already ruled it out.

My son eats really well at night when's he's drowsy, but during the day he does the "suck-suck-suck pull away, regroup, suck-suck-suck" that you describe. Thankfully, we know that he's getting enough to eat, because he sucks like a barracuda, so we don't have the calorie issues that you have, but the behavior pattern is similar.

So, I'll just throw out there that the pattern (in our case) is because he's distracted. Like your Robbie, my LL is happy and smiley and interactive. Meal times during the day are an interruption of the fun of looking around the room and staring at toys and stuff. Have you tried feeding him in a boring, dark room? Maybe with a blanket thrown over the two of you so there's nothing to see? If you've ruled out oral avoidance and you've ruled out lingering pain with breast milk, it might just be that eating is boring, so if he sees things he'd rather be doing, he won't focus on eating.

Tracy said...

Keep up the good work, Trish. Sorry you have to go through so much to feed Robbie. Another example of how unfair this all is.

Anonymous said...

Trish-Keep up all your great work....and please don't listen to any of us silly people about pumping and no pumping or formula or no formula.....Do what you feel you have to do...your Roobbie's mommy not us, we all just want to let you know we are trying to help and hopefully give you some suggestions that might help! I would also like to add that keep on trucking with the pumping.....I son and I never nursed well and all I could do for him was to pump.....I pumped for 6 1/2 months till I had to go back to work and had issues. I also researched it and found the most productive time for milk supply is from 1 to if you can try to pump at that time:) Anyway any of your milk you can supply Robbie with is a huge help....from one ounce to a million. I hope he starts eating for you soon and Good Luck my prayers and thoughts are with you!

Aidan's mom said...

Ok... it has to be said. Anon #1: Be quiet. You do not know what you are talking about. Most babies will not starve. But micropreeemies are NOT most babies!!!

They have a host of reasons why they have feeding issues. Feeding issues are the single most common "take-home" problem for preemies. Micropreemies have in some cases: 1. Weak lungs and low stamina to feed. 2. Low tone in their trunk from missing out on the third trimester in the womb and therefore often they have problems with reflux and the speed at which their stomach empties. 3. Oral aversions from weeks of having a ventilator tube shoved down their throat. 4. Other sensory issues from being premature that make it tough to feed.

Babies with TRUE feeding problems WILL starve themselves. I can introduce you to dozens of families of preemies I have met that have had to resort to a g-tube for nutrition because their baby IS starving himself.

Tricia, please just listen to whatever your gut tells you. You are Robbie's mom and you know something is not right. Have you thought about seeing a GI specialist to have delayed emptying ruled out and to get another eye on Robbie's feeding issues?

Heidi said...

Thirteen times? Wow. I don't know how you do it. Me? Padded room for sure, a loooong time ago. I hope you know how awesome you are!

As always I wish I had some wisdom for you. Even though my opinion means squat, I have to say I agree with you 100% that going 3 hours is not going to help. Logic tells me he'll just be more frantic, and since he doesn't enjoy eating giving him fewer opportunities seems like going in the wrong direction. Just wondering...does the GI doctor have kids? Because, seriously, I think you have to be a parent to fully understand that in situations such as this the baby is calling all the shots. They may be small, but you can't make them do anything; you have to do it on their terms and play by their rules.

I really do believe that one day there will be a turn and quite rapidly he will being to eat and enjoy it. I just always think of how small he was when he was born, and how much he has grown since. It may not be... (can't think of right word -- none seem to really fit) but it still amazes me how far he's come from where he started.


Anonymous said...

This is pretty obvious, so maybe you all ready have considered it; but could it be GERD? If so have you tried PPIs and not just Zantac or Axid? Do you have a GI who is willing to give PPIs in an effective dose? Also thanks Aidan's mom for your remark! Totally true.

The Quarke Family said...

Hi Trish. I'm defnitely not a nutritionist, but I just wanted to say that for an ADULT olive oil is really good fat - it's the healthy kind we need. If you've been told to give it to Robbie I imagine it's the same for him. So don't worry about that one, and DO count it as a success - it's good fat.

That's probably a small consolation, but sometimes every little helps, right?

Good luck!

Trish said...

Anonymous #4- it most assuredly was from GERD. (He had a hiatal hernia which was repaired while in the NICU) He has suffered horrible, horrible reflux pain for a long time.

He's now on Prevacid Solutabs (1/2 tab 2x/day) which has FINALLY been our miracle solution. He's no longer in pain.

The leading theory (and I subscribe) is that all the months of being in pain has lead to him hating eating. Even though the pain is gone, the damage is done.

Now we just have to muddle through it until he realizes it's okay to eat.

Quarke- I realize olive oil is a healthy fat. I'm not worried about it being bad for him so much as the lack of calories from a more usual source is keeping him from being fully nourished. Some days the olive oil is as much as 20% of his calories. That can't be normal.
I'm thinking a nutritionist will let me replace at least one dose of it with something like Duocal which would provide vitamins AND calories.

Trish said...

oh.. and Aidan's mom- Thank you.
If only traditional wisdom worked, eh?

Nicky- Robbie is easily distracted as well. unfortunately, the dark room and quiet only works maybe 1% of the time. Sometimes I can get him enraptured in my screensaver (a liquid pool) and that helps, too.. but typically when it does work, it only buys mr perhaps 10cc max.

craptastic_mail said...

know that I am suggesting this out of love and concern......I hear how stressed you are, and even though I don't "know" you, I care about you and Robbie. (not to sound creepy and stalker like, but I've been reading you so long I feel like I know you)

Anyway, I was wondering if you've let your husband try feeding him? I mean, really like all weekend be the one to feed him. First of all, you deserve the break. You are BOTH Robbie's parents. Second of all, maybe having someone else do it will interest him? Or maybe Robbie might sense your anxiety and go off of that? He might be picking up stress cues from you. Babies are so intuitive. They sense and feel emotions that we don't realize we're putting out there.

Trish said...

craptastic.. we've tried. My husband is a little.... well.. not helpful in this area. He can barely hold robbie comfortably.. trying to manipulate a baby AND a bottle is just too much for him.

Even out trained OTs have a hard time w/Robbie. And David just doesn't get it.

Plus he still refuses to get up at night. It would have to be me anyway.

camille said...

You are doing amazing. Seriously, only a mother's love would spur someone to be either feeding or pumping 18 times a day. That is simply amazing.
After all of this, I think you are due for an easy toddler.
Thinking of you.

Alex said...

I think you're doing an amazing job with him, and I think he's very lucky to have you as his Mom.

Brenna's Mom said...

I just ran across your blog, and I understand your helplessness. I feel for you very much.

I'm not sure if you are aware of this site, but your story seems very much like the what other FUNDO children have experienced.

I hope that helps you find some info.

Lisa said...

Trish - I am here from Mrs. Spit's blog...I only wanted to say hi and give you ((HUGS)) - I admire your strength through all of this.

ivory and jamie said...

I wish so badly that I could help you somehow. That I had some magic solution or that I lived close enough to help :(

Elizabeth said...

Prayers and hugs. I have no advice.

I take it back, I do have advice. For all the advice givers - have a heart. You are telling a Mom who has tried everything and would do anything for her son... that there's this 'easy' solution. It's got to hurt and she's hurting enough already.

I cry and think I don't deserve the easy life that overwhelms me. I'd give a lot to give you just one day that goes well.

More prayers and more hugs.