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

11 comments:

Anonymous said...

Trish-
Sorry about your rough week, it will eventually get better! And I promise you'll have more Great/Good days with OT than bad! I agree with you....if your not comfortable with the answers your getting PLEASE get a second....third or more opinions. I promise it will help! It made me more at ease with my sons health issues!
Thanks for all the wonderful updates on your blog and keep up all your wonderful work! I also look forward to seeing more awesome pics of that little angel as well as reading about him.
BTW...Trish is the
WORLDS GREATEST MOMMY! My prayers and thoughts are with you!

Michelle said...

((HUGS))
Specialists are notorious for having a terrible bedside manner. The thing is, they're usually right. I wish you had more help though. :(

Heather said...

I don't think you're anal retentive. You're doing a good job as his mother and advocate. Every patient needs an advocate. Doctor's may act like they know what they are talking about, but you are the only one who knows what is normal for your child and what is or is not working. They are not there twenty-four hours a day, so they need your information and pushing to make sure they are making the right care decisions. Keep up the good work!

Leah said...

I can't even imagine what you are going through. Do you have the option of trying a new doctor? Sometimes they are just too busy to give a damn about what their patients are really telling them. Don't be afraid to speak up and tell her that you feel like she is dismissing you. I bet she's never had a preemie that went through what Robbie is. Arrgghh!!!

Mrs. Spit said...

I think you are a great advocate. Can I hire you if I need one?

As long as you aren't saying throw a moose on the Spit's. . ..

Dazzling Rose said...

I don't normally comment, but this came on my local news earlier and I thought of Robbie

http://www.king5.com/localnews/stories/NW_011009WAB-baby-moose-KS.11388925.html

Can't be anything but a good sign, right??

We're all rooting for you guys, you're a great mom in all that you do for your son.

countingpaisley said...

Trish-

I agree with you about the suspension vs. solutabs. I don't know how your insurance is, but a lot of the kids I care for need prior auths to get it. (solutabs are on the pricey side). And most certainly put the whole pill in the syringe, suck water up and let it dissolve. I can't believe they told you to give Robbie the pill in his mouth!

And I don't think you are being anal. You are informed and concerned about your son's growth and progress. You are his advocate. Robbie is so very very lucky to have you. He has no idea.

As far as the g-tube: Sure he might weigh more if he had it and you could get more food into him. But it all back fires when you try and give food by mouth and by the g-tube.


I really hope the Prevacid helps and Robbie becomes a little piggie!

I know you might not want to hear it, but you are an amazing mother. And it can't be said enough how very lucky Robbie is to have you. He owes you many Mother's day cards and gifts!

AngelsAmid said...

They always say to trust your instincts- it's so easy for doctors to dismiss things as "normal" but you know better. I hope the solutabs do help- I can't believe she said to just throw the whole thing in his mouth though... You can do it Robbie! EAT EAT EAT! :)

Alex said...

Have you tried a probiotic like acidophilus to help him with his digestive issues? Maybe put a bit on your finger tip and left him suck it off? I know I gave it to my kids when they had tummy issues as babies. I know he's a premie but I've never heard of anyone having issues with it. Its just "good" bacteria that the stomach needs.

Trish said...

Alex- they had him on probiotics in the NICU but not since.
I was eating Activia for a while with the hopes that it might get to my breastmilk to him, but then I had to eliminate dairy.
but as of today I'm cleared to start light dairy again.
Perhaps I'll make a point of eating a bit and see if it helps. It can't hurt at this point!

heather... said...

The solutabs made a HUUUUUUUGE difference in my daughter. The suspension is more convenient, to be sure, but the tabs are much more effective. A bit of pain but totally worth it.

Enfamil AR also made a huge difference in my daughter. When I was weaning my daughter onto it, I made it with water instead of my precious breast milk (I made even less than you and I was on reglan). The AR formula is REALLY thick, so making it with water made it thinner and it wasn't as big of a change in consistency.

IF you decide to put Robbie on Reglan, watch him like a hawk. It doesn't happen with all babies, but it completely changed the way mine acted. She was fussy, unhappy, and was just...different. THANK GOODNESS my pediatrician accepted me telling her that Maddie was "different" as enough reason to take her off reglan. Like I said, it isn't common, but it's something to watch for. And it was a good way to kick-start her digestion. So it wasn't all bad. I feel bad even mentioning it because I don't want to give you anything to worry about, but I know you don't want him to be upset anymore.

You're really doing a great job, Trish! I am always available if you have questions or need to vent.