Our OT is "stumped." Her word. Not mine.
She just left. (OT is usually on Tuesdays but since mother nature took an ice-dump on us the last few days, it got pushed to today.)
She said she's stumped. Essentially he doesn't display any of the usual behaviors that come along with food refusal. He doesn't have an oral aversion, he shows some mild sensory stuff but they don't come with oral defensiveness like they usually would. He "looks greats." (If I had a dollar for every time someone has said that in the last 8 months...) He's essentially on track developmentally (rolling still eludes us, but everything else is fine.) He isn't sleeping too much (quite the opposite lately considering he's up and hungry every 90 minutes.) or lethargic. He isn't writhing in pain when he eats or shortly after.
She just doesn't know.
He was due to eat while she was here and she tried to feed him. He behaved exactly as I described. Stomach growling, starving, roots for the bottle. Sucks down 10cc immediately. BAM! STOP! No more.
He eventually fell asleep and over the next half hour I managed to get another ounce into him. That little bit felt like a victory. Quite sad that an ounce and a half feels like success when he really should probably be eating more like 4 ounces at a time. But I take what I can.
I told her that I asked for a referral to another OT for a 2nd opinion. She was supportive of that. I told her about the doctor's plan that if the new formula (which should be in today) doesn't work to admit him for a work up and she thought that might be good, too.
On the one hand- it's good. I mean, less problems are good, right? But on the other hand- WHY THE HELL WON'T HE EAT?!
He's nothing short of an enigma, I suppose.
Right now I'm trying to mentally prepare myself for a hospital visit. I dread it. I feel like we've spent enough hospital time that I should never have to see one again. But I know it's the best shot we have at answers.
At least this time I'll get to pack first.
Then I'm trying to tell myself there's a good possibility they won't have answers and may suggest a feeding tube.
I keep trying to figure life out that way. Will we be able to get childcare? How long will he need it? Will he ever outgrow it? Maybe we'll put it in and a week later he'll start eating again and my guilt-spiral will spin out of control.
There are so many questions and not many answers.
I'm trying to take things day by day- even hour by hour. But it's so frustrating.
I just want him to eat. There doesn't seem to be anything standing in his way except his lack of desire to do it.
We're all stumped.
--Trish
Thursday, January 29, 2009
Wednesday, January 28, 2009
next step
Talked to our pediatrician today.
I started with "We are NOT okay here."
I pretty much laid it out. He's eating less and less. I used to be able to get him to eat in his sleep but even that is a struggle now. At night he'll eat 15 or 20cc and refuse more, then wake up starving again an hour and a half later, eat another 15 or 20cc and we start over.
I told her he DID gain some weight last week with the aid of the olive oil, but that sometimes now he's not wanting solid food either. (I think it's the olive oil.)
She said that she was getting close to the point of feeling like we needed to do something drastic like admit him to the hospital. I told her that I was desperate and if she felt like that would help us- we'd do it.
She wants to try one more thing. She wants us to try some Nutramigen AA hypoallergenic formula. If that doesn't work, then the next step is that she's admitting him to the hospital for a work up.
She assured me that she IS taking this very seriously and we WILL get to the bottom of it.
Just hearing her say those words lifted a weight. I finally feel heard.
Now I just have to FIND the formula (no one seems to carry it) and give it a try.
Wish us luck.
--Trish
I started with "We are NOT okay here."
I pretty much laid it out. He's eating less and less. I used to be able to get him to eat in his sleep but even that is a struggle now. At night he'll eat 15 or 20cc and refuse more, then wake up starving again an hour and a half later, eat another 15 or 20cc and we start over.
I told her he DID gain some weight last week with the aid of the olive oil, but that sometimes now he's not wanting solid food either. (I think it's the olive oil.)
She said that she was getting close to the point of feeling like we needed to do something drastic like admit him to the hospital. I told her that I was desperate and if she felt like that would help us- we'd do it.
She wants to try one more thing. She wants us to try some Nutramigen AA hypoallergenic formula. If that doesn't work, then the next step is that she's admitting him to the hospital for a work up.
She assured me that she IS taking this very seriously and we WILL get to the bottom of it.
Just hearing her say those words lifted a weight. I finally feel heard.
Now I just have to FIND the formula (no one seems to carry it) and give it a try.
Wish us luck.
--Trish
Monday, January 26, 2009
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.
--Trish
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.
--Trish
Monday, January 19, 2009
On hold
I just spoke to our pediatrician.
She doesn't think we need a G-Tube yet. (Though she did say she wished we STILL had one. *cue more guilt*)
She's encouraged that he does so well with solids. She wants to push more solid food. As many as three times per day.
She said she wouldn't tell other people this, but for us, she recommneds adding a few mls of olive oil to his vegetables and a little sugar to his fruits.
He is drinking enough breastmilk to stay hydrated, which is good. She wants me to try a sippy cup or an open mouth cup as well. I have a few sippy cups but I REALLY don't see that happening just yet. I'll discuss it with the OT tomorrow.
The most important thing was that she feels like we have a few choices before we take a drastic step. That made me feel better.
She's willing to accept not-great weight gain, but it has to improve from where it's been. Which I agree. She wants 2 or 3 oz a week. Of course, if we hit that, I'm going to have the smallest 1 year old in history, but I'm trying not to think about that. I'm just trying to focus on the journey, not the destination.
Wish us luck.
--Trish
She doesn't think we need a G-Tube yet. (Though she did say she wished we STILL had one. *cue more guilt*)
She's encouraged that he does so well with solids. She wants to push more solid food. As many as three times per day.
She said she wouldn't tell other people this, but for us, she recommneds adding a few mls of olive oil to his vegetables and a little sugar to his fruits.
He is drinking enough breastmilk to stay hydrated, which is good. She wants me to try a sippy cup or an open mouth cup as well. I have a few sippy cups but I REALLY don't see that happening just yet. I'll discuss it with the OT tomorrow.
The most important thing was that she feels like we have a few choices before we take a drastic step. That made me feel better.
She's willing to accept not-great weight gain, but it has to improve from where it's been. Which I agree. She wants 2 or 3 oz a week. Of course, if we hit that, I'm going to have the smallest 1 year old in history, but I'm trying not to think about that. I'm just trying to focus on the journey, not the destination.
Wish us luck.
--Trish
Thursday, January 15, 2009
I lied.
So I am going to talk about it.
He won't eat. It's worse and worse. I am struggling, struggling, struggling to get food into him. If he won't eat a bottle, I make him cereal.
Today I fed him with a syringe until he gave up and started spitting that out, too.
I'm a mess all the time.
David just found me in the bedroom- syringe in hand trying to feed him 1/2ml at a time, dripping drops and sticking his paci in his mouth and bawling my eyes out.
Robbie had finally stopped crying from hunger. He was busy wondering what the hell was wrong with his mommy.
Tomorrow I'll call the pediatrician and get the referral to the surgeon.
I have so much guilt about it that it's eating me alive. Another hole in my baby. My baby who should want to eat. Normal babies want to eat. They like it. They suck the skin off their mom's boobs. They wear silicone nipples out. Not mine. Mine occasionally accidentally sucks on a bottle and when he realizes he has food in his mouth, he spits it out.
It doesn't matter what bottle it is, or what consistency the milk is. Or what flavor. He doesn't want it. I don't know why. He doesn't seem to be in pain any more. But I think too many months of pain have made him hate it.
And no one can help us. I swear they all make shit up. No one know what to do for him. I think they just come over to visit and try to give us false hope.
I don't believe they can help. I think when he decides to eat again, he will.
I'll persue all the avenues to help him. but in the mean time, he's STARVING.
To hear your baby crying because he's hungry is the most excrutiating sound in the world. There is NOTHING I can do to fix it because he won't let me. And he's just a baby and doesn't understand.
So I give. I'll put him through pain because I can't figure out how not to.
I'll never forgive myself.
--Trish
He won't eat. It's worse and worse. I am struggling, struggling, struggling to get food into him. If he won't eat a bottle, I make him cereal.
Today I fed him with a syringe until he gave up and started spitting that out, too.
I'm a mess all the time.
David just found me in the bedroom- syringe in hand trying to feed him 1/2ml at a time, dripping drops and sticking his paci in his mouth and bawling my eyes out.
Robbie had finally stopped crying from hunger. He was busy wondering what the hell was wrong with his mommy.
Tomorrow I'll call the pediatrician and get the referral to the surgeon.
I have so much guilt about it that it's eating me alive. Another hole in my baby. My baby who should want to eat. Normal babies want to eat. They like it. They suck the skin off their mom's boobs. They wear silicone nipples out. Not mine. Mine occasionally accidentally sucks on a bottle and when he realizes he has food in his mouth, he spits it out.
It doesn't matter what bottle it is, or what consistency the milk is. Or what flavor. He doesn't want it. I don't know why. He doesn't seem to be in pain any more. But I think too many months of pain have made him hate it.
And no one can help us. I swear they all make shit up. No one know what to do for him. I think they just come over to visit and try to give us false hope.
I don't believe they can help. I think when he decides to eat again, he will.
I'll persue all the avenues to help him. but in the mean time, he's STARVING.
To hear your baby crying because he's hungry is the most excrutiating sound in the world. There is NOTHING I can do to fix it because he won't let me. And he's just a baby and doesn't understand.
So I give. I'll put him through pain because I can't figure out how not to.
I'll never forgive myself.
--Trish
Positive
Food wars continue. I don't even want to talk about it any more.
Suffice it to say that I'm exhausted.
But let's try to be more positive.
New things in Robbie's world:
He's getting better on his tummy. Tummy time is still a very short game because he despises (DESPISES) it, but I've been working on giving him the two minutes he'll tolerate several time a day.
This has helped him with his pushing up. He's always had really great head control, but he never even tries to push up because as soon as you flip him over he starts screaming hysterically. But we're not able to get him over and he'll occasionally even try to push up on his own.
If you put him up on his elbows, he can hold it for several minutes.
He's also getting more and more vocal. I'll upload a video later that you can hear him cooing. You won't be able to see much because it was darkish in the room and they always upload even darker, but you can hear him talking.
His latest thing is that any time something new is in his mouth, he starts talking. A new toy, my hands, his hands, whatever- he gets really vocal. He sometimes does the same thing when he's eating solids.
Which is another thing- solids are going pretty well.
So far he's had rice cereal, avocado and oat cereal. He's not too sure about the avocado. I think the consistency was a little odd for him. But we're not giving up. Avocados have LOTS of calories, so I'm hoping I can get him to love it. The rice cereal is okay but doesn't travel all the way through his system so well. The oat cereal, though- he really likes. And it's helping to keep him regular so it's a double bonus.
We're going to try the avocado again for a few days then I think we might try sweet potatoes.
I'm really focusing on vegetables that have more calories than breastmilk. Anything to give him a boost since he's still not eating. (Oh wait, we're not talking about that.)
Robbie is also falling more in love with his hands every day. Reaching for things, grabbing them- and that best part- putting things in his mouth. He's working on trying to control his paci and on the rare occasion that he does eat a bottle, he wants to have his hands on it so he can "hold" it.
He's also smiling and laughing more and more. Those are my favorite parts. Sometimes when he catches my eye and just beams I'm reminded all over again how incredibly lucky I am. The kid loves me. What more could a mom want?
He's also sleeping great at night. If we could get that issue we're not discussing under control, I have no doubt that he'd sleep through the night. He goes to bed about 11pm every night and sleeps until 9, 10, sometimes 11am.
Napping is still intermittent, but with a 10-12 hour stretch at night, even with getting up to (try to) feed him every 3 hours and pumping, I'm able to get enough sleep to function most days.
And of course, he's as handsome and adorable and precious as ever.
With that- pictures to prove it!
--Trish
I finally decided this Bebe Pod thing isn't so bad after all.
It certainly is a different perspective up here.
You know, I think I really like it!
Daddy doesn't feel good so I'm keeping him company.
Boy, he's demanding. I need a nap.
My daddy is sooooo funny!
I have a new toy. Mommy says eventually my feet will touch the bottom.
It sure does taste good.
And it has cool toys!
Lookie what else I can do!
It sure is hard.
Mommy is trying to feed me this new stuff called "cereal." I'm still a little unsure.
And the "video" that's really just audio.
Suffice it to say that I'm exhausted.
But let's try to be more positive.
New things in Robbie's world:
He's getting better on his tummy. Tummy time is still a very short game because he despises (DESPISES) it, but I've been working on giving him the two minutes he'll tolerate several time a day.
This has helped him with his pushing up. He's always had really great head control, but he never even tries to push up because as soon as you flip him over he starts screaming hysterically. But we're not able to get him over and he'll occasionally even try to push up on his own.
If you put him up on his elbows, he can hold it for several minutes.
He's also getting more and more vocal. I'll upload a video later that you can hear him cooing. You won't be able to see much because it was darkish in the room and they always upload even darker, but you can hear him talking.
His latest thing is that any time something new is in his mouth, he starts talking. A new toy, my hands, his hands, whatever- he gets really vocal. He sometimes does the same thing when he's eating solids.
Which is another thing- solids are going pretty well.
So far he's had rice cereal, avocado and oat cereal. He's not too sure about the avocado. I think the consistency was a little odd for him. But we're not giving up. Avocados have LOTS of calories, so I'm hoping I can get him to love it. The rice cereal is okay but doesn't travel all the way through his system so well. The oat cereal, though- he really likes. And it's helping to keep him regular so it's a double bonus.
We're going to try the avocado again for a few days then I think we might try sweet potatoes.
I'm really focusing on vegetables that have more calories than breastmilk. Anything to give him a boost since he's still not eating. (Oh wait, we're not talking about that.)
Robbie is also falling more in love with his hands every day. Reaching for things, grabbing them- and that best part- putting things in his mouth. He's working on trying to control his paci and on the rare occasion that he does eat a bottle, he wants to have his hands on it so he can "hold" it.
He's also smiling and laughing more and more. Those are my favorite parts. Sometimes when he catches my eye and just beams I'm reminded all over again how incredibly lucky I am. The kid loves me. What more could a mom want?
He's also sleeping great at night. If we could get that issue we're not discussing under control, I have no doubt that he'd sleep through the night. He goes to bed about 11pm every night and sleeps until 9, 10, sometimes 11am.
Napping is still intermittent, but with a 10-12 hour stretch at night, even with getting up to (try to) feed him every 3 hours and pumping, I'm able to get enough sleep to function most days.
And of course, he's as handsome and adorable and precious as ever.
With that- pictures to prove it!
--Trish
I finally decided this Bebe Pod thing isn't so bad after all.
It certainly is a different perspective up here.
You know, I think I really like it!
Daddy doesn't feel good so I'm keeping him company.
Boy, he's demanding. I need a nap.
My daddy is sooooo funny!
I have a new toy. Mommy says eventually my feet will touch the bottom.
It sure does taste good.
And it has cool toys!
Lookie what else I can do!
It sure is hard.
Mommy is trying to feed me this new stuff called "cereal." I'm still a little unsure.
And the "video" that's really just audio.
Tuesday, January 13, 2009
A new theory
Well, OT just left.
For once she actually got to see Robbie's (not) eating in progress.
At 1:15, he acted like he was STARVING. He'd barely eaten at his 11:00 feeding, so that was entirely likely.
He was wide awake, so I knew he wouldn't eat, but I hoped.
So I gave him a bottle. He sucked on it like a mad man for about a minute and a half. Then he stopped.
He'd taken 10cc. (About 1/3 of an ounce)
That was about the time the OT showed up. I was still sitting with the bottle in the mouth. He gummed at it. And gummed at it. And gummed at it.
She asked if she could try and I passed him over.
For an hour she stimulated his mouth, tried different positions, played with him. She eventually took a break and did his stretches and tried again. He took another 10cc in that time.
He was finally getting drowsy.
I told her that he'd eat now and took over. Sure enough, he sucked down 60 cc (2 oz) in about 10 minutes.)
That's the story of my life. Try to wear him out, try to feed him. Emphasis on TRY.
But at least she got to really see what it's like.
So her theory is now this:
He's SO not oral-averted that he's actually the opposite. She said he's a bottomless pit of oral stimulation need. All he wants is oral stim. So much that all it takes is something in his mouth to make him happy. He can ignore hunger (eating only enough to turn off the hunger) as long as his need for oral stimulus is met.
Now, I'm not 100% sure this isn't all a bunch of mumbo jumbo, but it does make sense. He'll chew/suck on anything- his hands, toys, pacis, my hands- you get the idea. But he won't EAT.
Anyway, she did some vibration stuff on his cheeks. He LOVED that. He just laughed and laughed. So I guess if nothing else, he's having fun. The idea is that we need to try to "fill up" his oral need and then he can focus on something else.
We'll see.
Of course, I also talked to the GI's office twice in the last 2 days. It started as me calling to ask them to call in the script for the Prevacid solutabs (his reflux pain is IMMENSELY improved now- and no side effects from the lactose.) and ended up with me telling them he's still not eating.
It would be funny if it weren't so serious but the GI's office recommended and OT second opinion and the OT recommended a GI second opinion. No one really knows anything.
I'm not sure if I believe anyone can do anything at this point.
At this point my plan is to give the new drugs and new therapies until the end of next week to work. Maybe once he feels okay long enough, he'll have an appetite enough to want to eat. And we'll fill his oral stim "bucket" as best we can and see what happens.
If nothing gets better, I'm going for a GI 2nd opinion. I would like to see about something to stimulate his appetite and see if it helps.
If it doesn't, I'm not sure I have much choice about the G tube. I broke down into tears talking to the OT about it today.
I feel so emotional about it. It feels so drastic. I feel so guilty that I let them put one in in the first place, then guilty that I let them take it out and now it turns out he may need another.
I wonder how it will affect him long term. Will it make his oral issues worse? Will it make his reflux worse? Will he be able to run and jump and play like other kids? Will he always have stomach problems? And of course, there are the risks of surgery in general.
But I worry about not doing it as well. He's just not growing. While being small isn't the worst thing in the world, babies should grow. I worry about his health and his developement.
I broke out the exersaucer yesterday and he really likes it. But his legs are too short for his feet to reach even on the lowest setting and his arms are too short to reach any of the toys.
Right now he's doing well in every other area except this. But it can't be long before other areas start to suffer.
I just hate all of this and want him to get better.
For now, we just keep slugging along.
--Trish
For once she actually got to see Robbie's (not) eating in progress.
At 1:15, he acted like he was STARVING. He'd barely eaten at his 11:00 feeding, so that was entirely likely.
He was wide awake, so I knew he wouldn't eat, but I hoped.
So I gave him a bottle. He sucked on it like a mad man for about a minute and a half. Then he stopped.
He'd taken 10cc. (About 1/3 of an ounce)
That was about the time the OT showed up. I was still sitting with the bottle in the mouth. He gummed at it. And gummed at it. And gummed at it.
She asked if she could try and I passed him over.
For an hour she stimulated his mouth, tried different positions, played with him. She eventually took a break and did his stretches and tried again. He took another 10cc in that time.
He was finally getting drowsy.
I told her that he'd eat now and took over. Sure enough, he sucked down 60 cc (2 oz) in about 10 minutes.)
That's the story of my life. Try to wear him out, try to feed him. Emphasis on TRY.
But at least she got to really see what it's like.
So her theory is now this:
He's SO not oral-averted that he's actually the opposite. She said he's a bottomless pit of oral stimulation need. All he wants is oral stim. So much that all it takes is something in his mouth to make him happy. He can ignore hunger (eating only enough to turn off the hunger) as long as his need for oral stimulus is met.
Now, I'm not 100% sure this isn't all a bunch of mumbo jumbo, but it does make sense. He'll chew/suck on anything- his hands, toys, pacis, my hands- you get the idea. But he won't EAT.
Anyway, she did some vibration stuff on his cheeks. He LOVED that. He just laughed and laughed. So I guess if nothing else, he's having fun. The idea is that we need to try to "fill up" his oral need and then he can focus on something else.
We'll see.
Of course, I also talked to the GI's office twice in the last 2 days. It started as me calling to ask them to call in the script for the Prevacid solutabs (his reflux pain is IMMENSELY improved now- and no side effects from the lactose.) and ended up with me telling them he's still not eating.
It would be funny if it weren't so serious but the GI's office recommended and OT second opinion and the OT recommended a GI second opinion. No one really knows anything.
I'm not sure if I believe anyone can do anything at this point.
At this point my plan is to give the new drugs and new therapies until the end of next week to work. Maybe once he feels okay long enough, he'll have an appetite enough to want to eat. And we'll fill his oral stim "bucket" as best we can and see what happens.
If nothing gets better, I'm going for a GI 2nd opinion. I would like to see about something to stimulate his appetite and see if it helps.
If it doesn't, I'm not sure I have much choice about the G tube. I broke down into tears talking to the OT about it today.
I feel so emotional about it. It feels so drastic. I feel so guilty that I let them put one in in the first place, then guilty that I let them take it out and now it turns out he may need another.
I wonder how it will affect him long term. Will it make his oral issues worse? Will it make his reflux worse? Will he be able to run and jump and play like other kids? Will he always have stomach problems? And of course, there are the risks of surgery in general.
But I worry about not doing it as well. He's just not growing. While being small isn't the worst thing in the world, babies should grow. I worry about his health and his developement.
I broke out the exersaucer yesterday and he really likes it. But his legs are too short for his feet to reach even on the lowest setting and his arms are too short to reach any of the toys.
Right now he's doing well in every other area except this. But it can't be long before other areas start to suffer.
I just hate all of this and want him to get better.
For now, we just keep slugging along.
--Trish
Saturday, January 10, 2009
Survival
I apologize for the delay in posting. It's been a very hectic week and this is going to be a long one, so it was hard to get to it.
We've survived our week of appointments. I'll get to them one by one.
Tuesday was OT.
It was frustrating, to be honest. There was a bit of double scheduling drama that involved getting Robbie and myself up hours earlier than normal only to be called and told the appointment was changed back to the afternoon. The reasons were good, but it's hard to be reasonable when you're exhausted.
Then she got here. The original plan was that our OT lady was coming with the head OT lady. Head OT lady couldn't come because of the aforementioned scheduling conflict.
Then when she did come all she wanted to talk about was thickening his feeds. I explained that I used the thickener for about 10 days with some limited success (that coincided with a new med refill which will be discussed later) but he didn't gain any weight at all during those 10 days. The thickener has no calories so it's basically watering down his food by 5% because I add 5ml to every 100ml of food.
She kept telling me to add the thickener after the milk. As though that has anything to do with it. HE DOESN'T FINISH BOTTLES. It's not like I can just feed him 5% more food. Don't I wish!
We basically talked in circles the whole time with her telling me to do something that I told her wasn't working. I switched nipples back to the Dr. Brown's preemie nipples and that seemed to help him control things a little better much the same as the thickener did. And it doesn't compromise calories.
In better news, we discussed his muscle tightness ("high tone") and how much improved his bending is. (Go us! I'm Robbie's personal trainer. We're a team.) and identified a hip thing that the PT back in the NICU pointed out. (His hip is wonky where it makes his toes on his left food point outward. My left leg does the exact same thing.) and what to do about it. He HATES that exercise, btw. He doesn't mind any of the other stuff, but that one upsets him.
She left and I mostly felt like I'd just wasted an hour and a half of my life.
Then came Wednesday.
Off to the pediatrician. Only when I got there (after fighting through rush hour traffic that threatened to turn me into a road-rage news story) I found that it was actually a nurse visit for his remaining vaccinations only. They didn't even weigh him.
I did see Dr. P in the hallway but only long enough for her to coo over his outfit and tell us she didn't want to see us again until his 9 month checkup.
I decided it was okay because the really important visit was the GI specialist on Thursday.
I then spent a day/night of hell with a feverish, cranky, clingy, miserable baby. Vaccines are fun.
Thursday found a more cheerful, less feverish baby and the GI doc visit.
I went to that appointment armed with a number of questions and suggestions.
I arrived at that appointment far earlier than expected so I swung by the NICU to say hello.
I ran into one of my favorite NNPs and one of the lactation consultants in the hallway. They cooed over how good he looks and the LC walked me to the NICU.
She asked about nursing. I was sad to tell her that he doesn't, but proud to tell her I'm still pumping and keeping up with his needs. (Easy to do when the kid doesn't eat, but let's not go there.) She was full of praise, which was nice.
A few of the nurses popped out to say hello and make eyes at Robbie. He made eyes back. He even smiled a few times and laughed once. As much as I do not miss living there, it was nice to see friendly faces.
Robbie looked into the NICU (we were out in the hallway) with a curious look. I wish I knew what he was thinking.
Then we were off to the appointment.
I have very mixed feelings about how it went.
I'll take my concerns point by point.
1) I wanted to switch from Prevacid suspension to solutabs (or some other form)
The suspension is very volatile and we always experienced a bit of a honeymoon period right after a prescription is filled. Then it tapers off. It's clear that the drug is breaking down.
She completely agreed with that and gave me some samples of the solutabs to try - with instructions to call on Monday. If things are improved, she'll call in the script. If not- we'll completely change drugs, likely to Nexium.
1a) The solutabs use lactose as a binder and I was mildy concerned about that because of the theory that he doesn't tolerate dairy well.
She said we'd try it and see what happened.
1b) I asked about said dairy and if she felt it was necessary for me to continue to limit my dairy intake.
She said that we'd use the solutabs as a test. If by Monday things were going well, I could slowly add dairy back to my diet starting with cheese and yogurt.
Let me just say chhhhhhhhhhhhheeeeeeeesssssssse and yoooooooooooooogurt.
I don't really even like yogurt but right before I cut dairy out, I became addicted to the fat free vanilla Activia in a smoothie. Yum!
2) I asked about some sort of motility agent.
In babies with reflux and in babies with fundos, gastroparesis (slowing/stopping of some of the movement in the gut) is common. I thought perhaps if we can speed up his digestion that would help him not puke so much and make him hungrier.
I specifically asked about Reglan (yucky side effects) or Domperidone.
She shook her head. She doesn't think that's necessary at all. She said that IF we did that, she'd use a 3rd drug (I forget the name now) that would both speed things up and stimulate appetite, but it comes with a side effect of extreme drowsiness which obligates him to eat larger volumes when he's awake which isn't ideal.
I was a little annoyed at being dismissed w/o much of a discussion about the issue.
3) The non eating.
She mostly just nodded. In that "yes, that's what reflux babies do" way. I understand she sees this every day. But for me, this is MY kid.
I explained that he only eats when he's asleep and that I'm feeding him an average of 12 times a day to even get close to a reasonable amount of food in him.
She allowed that was a lot, but didn't comment further.
The real problem here is that he had gained 19oz in the 35 days since we'd been there. She finds that acceptable. Not ideal, of course, but as they've told me before- all they see are babies with stomach problems. They're used to sub-par weight gain.
The problem is that I know that he actually gained 17 oz in 21 of those days and has only gained 2 in the last 14. I'm concerned about the current trend continuing.
She pulled up his growth chart and said he's still got plenty of time to catch up (they want him caught up by age 2) and he was on his own growth curve so he was fine.
3a) I mentioned that the pediatrician had mentioned a G tube at one point and she just shook her head but didn't say much.
4) I asked if she thinks the fundo is causing some of his trouble with the volume intake.
She said no.
I think she's wrong. How can tying down part of a person's stomach NOT affect how it stretches?
5) I asked how much food he needs to protect his brain development.
This one made me cry. I've been so worried because he's already at a disadvantage in so many ways because he was so early.
Is my resistance to a G tube causing him more trouble? Am I risking his health further?
I was relieved at the answer. 100ml/kg.
At this stage that's 433ml/day. His worst days, he's eating just over 500ml. Relief. But at least I can keep that as a measure in my mind that if he's not hitting, I need to insist on seeing someone.
I should add that she looked at me like I was NUTS when I asked the question. I told her several times that I'm an anal retentive mother. She was warned.
I even made her write it down for me.
6) I asked her about the OT's beloved thickener.
She agreed that a non calorie thickener is probably not ideal. She said that if I want to thicken she'd recommend Enfamil AR instead.
I do resist that because he has SUCH a history of not tolerating formula that I hate to add anything in.
The other problem is that formula doesn't last.
Right now if he doesn't finish a bottle, I can save it for the next feeding. (Breast milk keeps well. It has great antibacterial properties.) but if it is mixed with formula, once he starts a bottle, it's only good for an hour. Which would mean pouring a lot of breast milk down the drain.
I'm currently producing about 22oz/day. He SHOULD be eating about 21oz/day. If he eats like he should, that doesn't leave much room for waste.
Plus he's proven that IF he will eat, he will gain on plain breast milk. (I won't even get into the latest information about melamine in formula.)
She wants to see us again in a month.
I left with the one thing I really wanted- a change in drugs. But I also didn't really feel heard. She did a lot of nodding. "Yeah, that's normal for a reflux baby." But I don't feel like she really got that he's not doing well.
In the end I decided to give the new Prevacid time to work and to go from there.
I gave him the first solutab yesterday afternoon. Since then we haven't had any extended post-meal screaming episodes.
He even managed to his his food goal today. He's still pukey (I started him on avocadoes yesterday. Green puke is.....interesting.) but nothing is going to stop that. It's just about managing his pain.
The solutabs are a little bit of an annoyance because I have to dissolve them in water in a syringe. It's awkward and I'm worried about getting every drop into him. But anything that works is worth it to me.
(As an aside she told me just to put it in his mouth. Yeah-he swallowed it whole. I talked to a pharmacist friend and got better info.)
I'm really praying that this continues to be successful and as the days go on his stomach will feel better and better and his appetite will return and he will eat. And grow.
He's been stuck at 9lb 9oz for more than 2 weeks now. We're shootin' for 10 pounds.
Throw a moose on the spit.
--Trish
We've survived our week of appointments. I'll get to them one by one.
Tuesday was OT.
It was frustrating, to be honest. There was a bit of double scheduling drama that involved getting Robbie and myself up hours earlier than normal only to be called and told the appointment was changed back to the afternoon. The reasons were good, but it's hard to be reasonable when you're exhausted.
Then she got here. The original plan was that our OT lady was coming with the head OT lady. Head OT lady couldn't come because of the aforementioned scheduling conflict.
Then when she did come all she wanted to talk about was thickening his feeds. I explained that I used the thickener for about 10 days with some limited success (that coincided with a new med refill which will be discussed later) but he didn't gain any weight at all during those 10 days. The thickener has no calories so it's basically watering down his food by 5% because I add 5ml to every 100ml of food.
She kept telling me to add the thickener after the milk. As though that has anything to do with it. HE DOESN'T FINISH BOTTLES. It's not like I can just feed him 5% more food. Don't I wish!
We basically talked in circles the whole time with her telling me to do something that I told her wasn't working. I switched nipples back to the Dr. Brown's preemie nipples and that seemed to help him control things a little better much the same as the thickener did. And it doesn't compromise calories.
In better news, we discussed his muscle tightness ("high tone") and how much improved his bending is. (Go us! I'm Robbie's personal trainer. We're a team.) and identified a hip thing that the PT back in the NICU pointed out. (His hip is wonky where it makes his toes on his left food point outward. My left leg does the exact same thing.) and what to do about it. He HATES that exercise, btw. He doesn't mind any of the other stuff, but that one upsets him.
She left and I mostly felt like I'd just wasted an hour and a half of my life.
Then came Wednesday.
Off to the pediatrician. Only when I got there (after fighting through rush hour traffic that threatened to turn me into a road-rage news story) I found that it was actually a nurse visit for his remaining vaccinations only. They didn't even weigh him.
I did see Dr. P in the hallway but only long enough for her to coo over his outfit and tell us she didn't want to see us again until his 9 month checkup.
I decided it was okay because the really important visit was the GI specialist on Thursday.
I then spent a day/night of hell with a feverish, cranky, clingy, miserable baby. Vaccines are fun.
Thursday found a more cheerful, less feverish baby and the GI doc visit.
I went to that appointment armed with a number of questions and suggestions.
I arrived at that appointment far earlier than expected so I swung by the NICU to say hello.
I ran into one of my favorite NNPs and one of the lactation consultants in the hallway. They cooed over how good he looks and the LC walked me to the NICU.
She asked about nursing. I was sad to tell her that he doesn't, but proud to tell her I'm still pumping and keeping up with his needs. (Easy to do when the kid doesn't eat, but let's not go there.) She was full of praise, which was nice.
A few of the nurses popped out to say hello and make eyes at Robbie. He made eyes back. He even smiled a few times and laughed once. As much as I do not miss living there, it was nice to see friendly faces.
Robbie looked into the NICU (we were out in the hallway) with a curious look. I wish I knew what he was thinking.
Then we were off to the appointment.
I have very mixed feelings about how it went.
I'll take my concerns point by point.
1) I wanted to switch from Prevacid suspension to solutabs (or some other form)
The suspension is very volatile and we always experienced a bit of a honeymoon period right after a prescription is filled. Then it tapers off. It's clear that the drug is breaking down.
She completely agreed with that and gave me some samples of the solutabs to try - with instructions to call on Monday. If things are improved, she'll call in the script. If not- we'll completely change drugs, likely to Nexium.
1a) The solutabs use lactose as a binder and I was mildy concerned about that because of the theory that he doesn't tolerate dairy well.
She said we'd try it and see what happened.
1b) I asked about said dairy and if she felt it was necessary for me to continue to limit my dairy intake.
She said that we'd use the solutabs as a test. If by Monday things were going well, I could slowly add dairy back to my diet starting with cheese and yogurt.
Let me just say chhhhhhhhhhhhheeeeeeeesssssssse and yoooooooooooooogurt.
I don't really even like yogurt but right before I cut dairy out, I became addicted to the fat free vanilla Activia in a smoothie. Yum!
2) I asked about some sort of motility agent.
In babies with reflux and in babies with fundos, gastroparesis (slowing/stopping of some of the movement in the gut) is common. I thought perhaps if we can speed up his digestion that would help him not puke so much and make him hungrier.
I specifically asked about Reglan (yucky side effects) or Domperidone.
She shook her head. She doesn't think that's necessary at all. She said that IF we did that, she'd use a 3rd drug (I forget the name now) that would both speed things up and stimulate appetite, but it comes with a side effect of extreme drowsiness which obligates him to eat larger volumes when he's awake which isn't ideal.
I was a little annoyed at being dismissed w/o much of a discussion about the issue.
3) The non eating.
She mostly just nodded. In that "yes, that's what reflux babies do" way. I understand she sees this every day. But for me, this is MY kid.
I explained that he only eats when he's asleep and that I'm feeding him an average of 12 times a day to even get close to a reasonable amount of food in him.
She allowed that was a lot, but didn't comment further.
The real problem here is that he had gained 19oz in the 35 days since we'd been there. She finds that acceptable. Not ideal, of course, but as they've told me before- all they see are babies with stomach problems. They're used to sub-par weight gain.
The problem is that I know that he actually gained 17 oz in 21 of those days and has only gained 2 in the last 14. I'm concerned about the current trend continuing.
She pulled up his growth chart and said he's still got plenty of time to catch up (they want him caught up by age 2) and he was on his own growth curve so he was fine.
3a) I mentioned that the pediatrician had mentioned a G tube at one point and she just shook her head but didn't say much.
4) I asked if she thinks the fundo is causing some of his trouble with the volume intake.
She said no.
I think she's wrong. How can tying down part of a person's stomach NOT affect how it stretches?
5) I asked how much food he needs to protect his brain development.
This one made me cry. I've been so worried because he's already at a disadvantage in so many ways because he was so early.
Is my resistance to a G tube causing him more trouble? Am I risking his health further?
I was relieved at the answer. 100ml/kg.
At this stage that's 433ml/day. His worst days, he's eating just over 500ml. Relief. But at least I can keep that as a measure in my mind that if he's not hitting, I need to insist on seeing someone.
I should add that she looked at me like I was NUTS when I asked the question. I told her several times that I'm an anal retentive mother. She was warned.
I even made her write it down for me.
6) I asked her about the OT's beloved thickener.
She agreed that a non calorie thickener is probably not ideal. She said that if I want to thicken she'd recommend Enfamil AR instead.
I do resist that because he has SUCH a history of not tolerating formula that I hate to add anything in.
The other problem is that formula doesn't last.
Right now if he doesn't finish a bottle, I can save it for the next feeding. (Breast milk keeps well. It has great antibacterial properties.) but if it is mixed with formula, once he starts a bottle, it's only good for an hour. Which would mean pouring a lot of breast milk down the drain.
I'm currently producing about 22oz/day. He SHOULD be eating about 21oz/day. If he eats like he should, that doesn't leave much room for waste.
Plus he's proven that IF he will eat, he will gain on plain breast milk. (I won't even get into the latest information about melamine in formula.)
She wants to see us again in a month.
I left with the one thing I really wanted- a change in drugs. But I also didn't really feel heard. She did a lot of nodding. "Yeah, that's normal for a reflux baby." But I don't feel like she really got that he's not doing well.
In the end I decided to give the new Prevacid time to work and to go from there.
I gave him the first solutab yesterday afternoon. Since then we haven't had any extended post-meal screaming episodes.
He even managed to his his food goal today. He's still pukey (I started him on avocadoes yesterday. Green puke is.....interesting.) but nothing is going to stop that. It's just about managing his pain.
The solutabs are a little bit of an annoyance because I have to dissolve them in water in a syringe. It's awkward and I'm worried about getting every drop into him. But anything that works is worth it to me.
(As an aside she told me just to put it in his mouth. Yeah-he swallowed it whole. I talked to a pharmacist friend and got better info.)
I'm really praying that this continues to be successful and as the days go on his stomach will feel better and better and his appetite will return and he will eat. And grow.
He's been stuck at 9lb 9oz for more than 2 weeks now. We're shootin' for 10 pounds.
Throw a moose on the spit.
--Trish
Sunday, January 4, 2009
Special
I feel like a failure.
And yes, yes, I know all of my loyal readers will comment and say that I'm not. My husband gave me the same speech this morning.
But I FEEL like a failure.
I already have what is perhaps an unhealthy emotional tie to his feeding. I'm his mom. My #1 job is to feed him.
First he wouldn't nurse. Now he just won't eat.
Logically I know I'm doing what I can. I've spend hundreds of dollars looking for a nipple that makes him happy. I set the alarm and get up sometimes every hour to try to get food into him while he sleeps since that's the only time he'll MAYBE eat. I drag him to doctors, I have therapists coming. I scour the internet looking for answers.
There are none. There are maybes and what-ifs and have-you-trieds.
I've been talking with a lady from a micropreemie board I joined who went through the same thing. So far she's the only person I've encountered that didn't end up resorting to a G tube. Her daughter managed to maintain weight gain overall (some good weeks some bad, much like Robbie has been) so they got by without one and then one day she just started eating again.
And I wonder if that's not what will happen with Robbie. One day he'll wake up and his stomach will be all better and he'll think "oh food? Yes, please. Thank you."
Do I struggle through until then? WHENEVER that may be?
He hasn't lost weight. YET. That's something, at least.
And maybe when he really gets going on solids, things will improve. The cereal is going okayish. Some days he gobbles it down like it's the best thing ever, some days he mostly spits it back at me. He's only 4 months adjusted- that's a pretty normal response.
But what if?
What if he DOESN'T outgrow it? What if I struggle on like this for another year. We sell our house so I can stay home to feed him constantly and a year from now he's no better off?
What does it mean? Is it as "simple" (simple. HA!) as he hurts when he eats so he doesn't want to. Or does it mean something? Is this a sign of autism?
He likes to be patted like nothing I've ever seen. The only thing that gets him through the worst stomach troubles is my patented double-pat. Both hands going full speed so that he's essentially vibrating under my hands.
I've now patted so much that I do it without thing.
Two nights ago David came to lay with me as I was trying to get Robbie to bed. I had my arm across his shoulders. After a few minuted David said "Why are you patting me? I burp just fine on my own." Then we both laughed. I don't even realize I'm doing it any more.
Is this love of patting Robbie has something normal? Or is it a sign of "something."
I tell myself "so what if it is?" I'd love Robbie through anything. But we ALL want our kids to lead full, productive, happy lives.
David tells me that even healthy, full term kids have problems. And that's true.
I know I shouldn't borrow trouble. But I think I really let myself believe all the wonderful things we were told in the NICU and beyond.
"He looks SO GOOD."
"he doesn't look like a preemie." (Whatever THAT means.)
"He's thriving!"
"He doesn't seem to have any last problems except reflux!"
I really thought that maybe- just maybe- we'd escaped unscathed. And now it seems that we haven't.
I'm on a new path of acceptance that we are truly becoming "special needs."
And I know it's not very PC to not want to be "special needs" but let's face it- we all want our kids to be normal.
And maybe he will be. Maybe we'll battle these eating issues and that's it. But I can't help but wonder what else is ahead.
In the mean time I pray. A lot.
God might be tired of hearing me cry. It's good He's so patient.
I would appreciate your prayers as well. And moose. We need more moose. Add a whale as well.
--Trish
And yes, yes, I know all of my loyal readers will comment and say that I'm not. My husband gave me the same speech this morning.
But I FEEL like a failure.
I already have what is perhaps an unhealthy emotional tie to his feeding. I'm his mom. My #1 job is to feed him.
First he wouldn't nurse. Now he just won't eat.
Logically I know I'm doing what I can. I've spend hundreds of dollars looking for a nipple that makes him happy. I set the alarm and get up sometimes every hour to try to get food into him while he sleeps since that's the only time he'll MAYBE eat. I drag him to doctors, I have therapists coming. I scour the internet looking for answers.
There are none. There are maybes and what-ifs and have-you-trieds.
I've been talking with a lady from a micropreemie board I joined who went through the same thing. So far she's the only person I've encountered that didn't end up resorting to a G tube. Her daughter managed to maintain weight gain overall (some good weeks some bad, much like Robbie has been) so they got by without one and then one day she just started eating again.
And I wonder if that's not what will happen with Robbie. One day he'll wake up and his stomach will be all better and he'll think "oh food? Yes, please. Thank you."
Do I struggle through until then? WHENEVER that may be?
He hasn't lost weight. YET. That's something, at least.
And maybe when he really gets going on solids, things will improve. The cereal is going okayish. Some days he gobbles it down like it's the best thing ever, some days he mostly spits it back at me. He's only 4 months adjusted- that's a pretty normal response.
But what if?
What if he DOESN'T outgrow it? What if I struggle on like this for another year. We sell our house so I can stay home to feed him constantly and a year from now he's no better off?
What does it mean? Is it as "simple" (simple. HA!) as he hurts when he eats so he doesn't want to. Or does it mean something? Is this a sign of autism?
He likes to be patted like nothing I've ever seen. The only thing that gets him through the worst stomach troubles is my patented double-pat. Both hands going full speed so that he's essentially vibrating under my hands.
I've now patted so much that I do it without thing.
Two nights ago David came to lay with me as I was trying to get Robbie to bed. I had my arm across his shoulders. After a few minuted David said "Why are you patting me? I burp just fine on my own." Then we both laughed. I don't even realize I'm doing it any more.
Is this love of patting Robbie has something normal? Or is it a sign of "something."
I tell myself "so what if it is?" I'd love Robbie through anything. But we ALL want our kids to lead full, productive, happy lives.
David tells me that even healthy, full term kids have problems. And that's true.
I know I shouldn't borrow trouble. But I think I really let myself believe all the wonderful things we were told in the NICU and beyond.
"He looks SO GOOD."
"he doesn't look like a preemie." (Whatever THAT means.)
"He's thriving!"
"He doesn't seem to have any last problems except reflux!"
I really thought that maybe- just maybe- we'd escaped unscathed. And now it seems that we haven't.
I'm on a new path of acceptance that we are truly becoming "special needs."
And I know it's not very PC to not want to be "special needs" but let's face it- we all want our kids to be normal.
And maybe he will be. Maybe we'll battle these eating issues and that's it. But I can't help but wonder what else is ahead.
In the mean time I pray. A lot.
God might be tired of hearing me cry. It's good He's so patient.
I would appreciate your prayers as well. And moose. We need more moose. Add a whale as well.
--Trish
Saturday, January 3, 2009
Stomach
When he DOES eat, he spend an hour crying afterward. Clearly in pain.
He just ate some cereal like a champ. Then took a bottle (in his sleep, of course.)
Then spent an hour gagging, wretching and crying.
I just want his stomach to treat him better.
Is that too much to ask?
--Trish
He just ate some cereal like a champ. Then took a bottle (in his sleep, of course.)
Then spent an hour gagging, wretching and crying.
I just want his stomach to treat him better.
Is that too much to ask?
--Trish
Friday, January 2, 2009
Food Wars Con't
I honestly just feel so beaten down.
When I say Food Wars, I say that because I feel like I'm at war.
I dread every feeding. Even when one goes well, I feel relief. "Three hours of feeling okay about things."
Tonight we had a little victory.
David made a nice dinner (Let me give my husband props. He was incredibly helpful and productive today.) of pork chops, potatoes, corn bread and some "lucky"gross beans black eyed peas.
Robbie was sleeping until 5 minutes before dinner (of course!) And as soon as I started eating, he started licking and smacking his lips, chewing at his hands. It hadn't been terribly long since he'd eaten, so I wasn't expecting him to be hungry, but am always glad to see it. I scarfed down my dinner in less than 5 minutes.
In that amount of time he was desperate for food. I decided I'd try some cereal.
I used about a half ounce of breast milk mixed with maybe 2 tsp of cereal.
HE ATE IT.
And I don't mean he let it sit in his mouth and eventually accidentally swallowed. He opened his mouth eagerly and swallowed quickly. A couple of times he pushed with his tongue, but most of the time, if I didn't shovel fast enough, he got upset.
The whole process took less than 5 minutes. I was floored.
He then took about 2 oz of a bottle.
Euphoria! He ate! He ate!
Maybe there is hope yet!
Of course, a couple of hours later, time for his bedtime bottle, he was hungry again. He scarfed an ounce, then stopped. I managed to squeeze in another 25cc (just under an ounce) and that was it.
My buzz was killed again.
I want solid food to be our magic answer, but he needs the bulk of his calories to come from milk for a good long while yet.
But how do I get him to eat?
It's beyond frustrating to have to basically lull him to sleep in order to get him to eat. And of course, bot TOO asleep, because then he just won't suck at all.
He's gained almost no weight this week- 2 oz, I think. He's only up 9 oz since his last appt 2 weeks ago. I think part of that is the Simply Thick. It's working in that he seems to swallow better and spit less, but I add about 5cc to every 100cc he eats. Since it has no calories, that's lowering his caloric intake by 5%.
I wish there was so magic answer.
I appreciate all of the suggestions and advice everyone is giving. Unfortunately I've already tried 99% of it.
-I gave up dairy.
-I've definitely tried different nipples & flows. You should see the bottle graveyard I have going. At some point I'll take a picture of all of them. It's funny and sad at the same time.
-I've done the chin support and I frequently do the cheek push thing.
-I get up every 3-4 hours at night to try to sneak in as much food as I can while he sleeps. (I need to say one more time- I'M TIRED.)
-I've tried dropper feeding.
-We're not trying spoon feeding.
-I did buy some sippy cups, though I haven't tried them just yet. All of the ones I bought have a valve system and if he doesn't suck on a bottle, I don't think a sippy will work.
-We keep upping his reflux meds in case it's pain related.
-We thicken his feeds.
I just keep hoping he'll outgrow it. Something will click and he'll suddenly like to eat.
If I'm guessing, I think that perhaps he's just in a constant state of not-quite-happy-tummy. You know when you just don't feel great? And you're sort of hungry but the thought of eating really just makes you queasier? You're not SICK, exactly, but your tummy isn't happy? That's what I think he is. Because it seems like he wants to be not hungry, but he doesn't REALLY want to eat. When he's really good and hungry, he'll suck down an ounce or two even when awake (that's RARE.) I think the reason he eats when he's asleep is because the drowsy sort of makes the not-quite-right tummy.
Is it reflux? I don't know. The boy has had way too much stuff done to his stomach. And I can't help but wonder if it's the surgeries that caused all of this.
Before the surgery he ate great. Even shortly after the surgery, he ate great. But slowly it's gotten worse.
The fundo was presented to me as part of the hernia repair. I now know that not to be the case. The fundo makes it more difficult for his stomach to stretch. I can't imagine how it must feel to have your stomach tied up around your esophagus.
And then there's the G tube. It's gone now, but the scar remains. I'm sure there's scar tissue inside as well. God only know how that affects him.
I've had a surgery or two in the last few years. I'll use my knee as an example. Even though my knee hurts far less than it did before the surgery (torn meniscus and bone damage) it still just isn't quite right. No amount of therapy has made it the same.
I'm sure his stomach is the same. Will it EVER be the same? I don't know.
Maybe if I'd researched more when it happened. If I'd listened to MY gut about the G tube. Maybe none of this would be happening now.
Or maybe it would. I'm a member of a few preemie message boards and the sleep feeding isn't unheard of. And not all of those babies had stomach surgery. Maybe I'm just having crazy mommy guilt.
Either way, wondering what might have been gets us nowhere. I know that. But I so wish for answers.
How? When? Why?
At this point I'm wondering how I can go back to work. No one can feed him except for me. Sure, if he decides to eat, anyone can. But I'm the only person crazy enough gauge when he's just sleepy enough to feed. To spend an hour patting him to sleep only to turn him around and shove a bottle in his mouth.
I was planning on going back March 1. That's when my employer stops paying for my benefits. But now? How do I do it?
I'd love to think that in the next 2 months he'll be magically cured. But realistically that's not likely.
Both David and I would love for me to stay home.
So now we're looking at trying to sell our house. In THIS economy. Yeah. Joy.
But we're thinking of trying anyway. Sell our house and buy a cheaper one. Robbie is worth it. That I'm sure of. But it's a matter of being able to do it.
And how do I get a house ready to sell when I spend upwards of 10 hours a day trying to feed a baby? I can barely find time to feed myself, do laundry, shower. But now I'm going to try to fit in fixing the door that my dog tore up? Get rid of all of our junk?
It's just all so overwhelming.
I look back at the past year and see what a huge journey it's been. This time last year I'd just found out I was pregnant with Robbie. I didn't even believe I'd really HAVE a baby. And here we are.
So I try to look forward. To 2010. I can only hope that things will be better by then. We just have to get there.
--Trish
When I say Food Wars, I say that because I feel like I'm at war.
I dread every feeding. Even when one goes well, I feel relief. "Three hours of feeling okay about things."
Tonight we had a little victory.
David made a nice dinner (Let me give my husband props. He was incredibly helpful and productive today.) of pork chops, potatoes, corn bread and some "lucky"
Robbie was sleeping until 5 minutes before dinner (of course!) And as soon as I started eating, he started licking and smacking his lips, chewing at his hands. It hadn't been terribly long since he'd eaten, so I wasn't expecting him to be hungry, but am always glad to see it. I scarfed down my dinner in less than 5 minutes.
In that amount of time he was desperate for food. I decided I'd try some cereal.
I used about a half ounce of breast milk mixed with maybe 2 tsp of cereal.
HE ATE IT.
And I don't mean he let it sit in his mouth and eventually accidentally swallowed. He opened his mouth eagerly and swallowed quickly. A couple of times he pushed with his tongue, but most of the time, if I didn't shovel fast enough, he got upset.
The whole process took less than 5 minutes. I was floored.
He then took about 2 oz of a bottle.
Euphoria! He ate! He ate!
Maybe there is hope yet!
Of course, a couple of hours later, time for his bedtime bottle, he was hungry again. He scarfed an ounce, then stopped. I managed to squeeze in another 25cc (just under an ounce) and that was it.
My buzz was killed again.
I want solid food to be our magic answer, but he needs the bulk of his calories to come from milk for a good long while yet.
But how do I get him to eat?
It's beyond frustrating to have to basically lull him to sleep in order to get him to eat. And of course, bot TOO asleep, because then he just won't suck at all.
He's gained almost no weight this week- 2 oz, I think. He's only up 9 oz since his last appt 2 weeks ago. I think part of that is the Simply Thick. It's working in that he seems to swallow better and spit less, but I add about 5cc to every 100cc he eats. Since it has no calories, that's lowering his caloric intake by 5%.
I wish there was so magic answer.
I appreciate all of the suggestions and advice everyone is giving. Unfortunately I've already tried 99% of it.
-I gave up dairy.
-I've definitely tried different nipples & flows. You should see the bottle graveyard I have going. At some point I'll take a picture of all of them. It's funny and sad at the same time.
-I've done the chin support and I frequently do the cheek push thing.
-I get up every 3-4 hours at night to try to sneak in as much food as I can while he sleeps. (I need to say one more time- I'M TIRED.)
-I've tried dropper feeding.
-We're not trying spoon feeding.
-I did buy some sippy cups, though I haven't tried them just yet. All of the ones I bought have a valve system and if he doesn't suck on a bottle, I don't think a sippy will work.
-We keep upping his reflux meds in case it's pain related.
-We thicken his feeds.
I just keep hoping he'll outgrow it. Something will click and he'll suddenly like to eat.
If I'm guessing, I think that perhaps he's just in a constant state of not-quite-happy-tummy. You know when you just don't feel great? And you're sort of hungry but the thought of eating really just makes you queasier? You're not SICK, exactly, but your tummy isn't happy? That's what I think he is. Because it seems like he wants to be not hungry, but he doesn't REALLY want to eat. When he's really good and hungry, he'll suck down an ounce or two even when awake (that's RARE.) I think the reason he eats when he's asleep is because the drowsy sort of makes the not-quite-right tummy.
Is it reflux? I don't know. The boy has had way too much stuff done to his stomach. And I can't help but wonder if it's the surgeries that caused all of this.
Before the surgery he ate great. Even shortly after the surgery, he ate great. But slowly it's gotten worse.
The fundo was presented to me as part of the hernia repair. I now know that not to be the case. The fundo makes it more difficult for his stomach to stretch. I can't imagine how it must feel to have your stomach tied up around your esophagus.
And then there's the G tube. It's gone now, but the scar remains. I'm sure there's scar tissue inside as well. God only know how that affects him.
I've had a surgery or two in the last few years. I'll use my knee as an example. Even though my knee hurts far less than it did before the surgery (torn meniscus and bone damage) it still just isn't quite right. No amount of therapy has made it the same.
I'm sure his stomach is the same. Will it EVER be the same? I don't know.
Maybe if I'd researched more when it happened. If I'd listened to MY gut about the G tube. Maybe none of this would be happening now.
Or maybe it would. I'm a member of a few preemie message boards and the sleep feeding isn't unheard of. And not all of those babies had stomach surgery. Maybe I'm just having crazy mommy guilt.
Either way, wondering what might have been gets us nowhere. I know that. But I so wish for answers.
How? When? Why?
At this point I'm wondering how I can go back to work. No one can feed him except for me. Sure, if he decides to eat, anyone can. But I'm the only person crazy enough gauge when he's just sleepy enough to feed. To spend an hour patting him to sleep only to turn him around and shove a bottle in his mouth.
I was planning on going back March 1. That's when my employer stops paying for my benefits. But now? How do I do it?
I'd love to think that in the next 2 months he'll be magically cured. But realistically that's not likely.
Both David and I would love for me to stay home.
So now we're looking at trying to sell our house. In THIS economy. Yeah. Joy.
But we're thinking of trying anyway. Sell our house and buy a cheaper one. Robbie is worth it. That I'm sure of. But it's a matter of being able to do it.
And how do I get a house ready to sell when I spend upwards of 10 hours a day trying to feed a baby? I can barely find time to feed myself, do laundry, shower. But now I'm going to try to fit in fixing the door that my dog tore up? Get rid of all of our junk?
It's just all so overwhelming.
I look back at the past year and see what a huge journey it's been. This time last year I'd just found out I was pregnant with Robbie. I didn't even believe I'd really HAVE a baby. And here we are.
So I try to look forward. To 2010. I can only hope that things will be better by then. We just have to get there.
--Trish
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