Sunday, February 03, 2008

Some Answers re: Failure to Thrive (Updated AGAIN)

I feel compelled to point out that the most recent anonymous comments I've received on my last several posts have been sensitive and kind, reminding me why it is that I continue to permit anonymous commenting on my blog. Like this one, for example:

Thank God for your pediatrician. Shame on Dr. C for not considering your situation better. Can you see Dr. D next time instead?
Um, so, there is no underlying cause?

I could see Dr. D. next time, but it's more complicated than that, which is why I didn't just schedule my one-month follow up with her. If I go to my follow up on Thursday with my regular pediatrician and we determine that Ellie isn't gaining enough weight, we'll have to coordinate with Dr. C. to admit Ellie for the NG tube. And if we get the NG tube, Dr. C. is the go-to person on that. And having continued follow up with Dr. C. on the NG tube then makes it weird and complicated to then turn around and follow up with Dr. D. So following up with Dr. D. only makes sense if we don't end up needing the NG tube, but if we don't end up needing the NG tube, then I guess we're okay with Dr. C. after all, right? So basically, so long as I have my pediatrician acting as our advocate, I think I'm okay with Dr. C. I have confidence with her medical knowledge, I just don't like her approach to me as a parent, but I have full confidence in my pediatrician's ability to intervene when necessary. At any rate, I intend to address this very question with him on Thursday when I see how Ellie's doing.

As for the underlying cause... The underlying cause at this point is being attributed to prematurity. My pediatrician is expressing some concern that there may still turn out to be another cause which will be more obvious once we get past being able to push sufficient calories into her system, but the only way to figure that out is to get this problem under control first. He is inclined to agree with Dr. C. that the simplest answer is likely to be the correct answer, but is not willing to dismiss the possibility that there might also be some other issue. (For the record, I don't think Dr. C. is completely eliminating the possibility of other causes either, but I think she's saying that in her experience this eating pattern and difficulty with growth is completely normal with premature babies, which is quite a relief, really)

Krissy asked:
This is probably a dumb question/suggestion after all you have been through...but have any of your doctor's suggested adding rice cereal to the EBM?

It's not a dumb question. No, noone has suggested it. However, adding rice cereal to the EBM wouldn't get the EBM anywhere NEAR 28 calories per ounce, so sticking with the fortifier is a better idea in this case.

From my original post on Failure to Thrive, Anonymous asked:
You did get the results of the blood tests, right? Does Ellie's output seem different from that of the others in any way? At what point did the growth first begin to slow? When Ellie is striking, will she take a bottle of water?

The blood tests, by and large, came back normal. The CO2 level came back low, but that was probably an artifact of how it was drawn (heel stick into an open container, so the CO2 probably dissipated into the air, since it wasn't a vaccuum container). Everything else that could have been an indicator of a problem came back normal. Ellie's output is lower than the others, but it's understandable because her intake is lower. Her growth began to slow essentially right after she was discharged from the NICU (e.g. after she stopped getting gavage feedings through an NG tube). She was my biggest (by a couple of grams) upon discharge from the NICU but fell behind Sam by their second appointment with the doctor (a week or two after discharge from the NICU) and fell behind Abby by December. Considering that she used to be a full pound heavier than Abby, that's significant. She is now two full pounds behind Abby and three full pounds behind Sam. When Ellie is striking she will not suck on anything but her thumb. No bottles, period. However, even if she would suck on a bottle, we would not give her water, because that would fill her tummy with something that contained no calories which would be taking a step backward. Since the babies were two months early, I've essentially got three two-month old babies, so they are too young to be taking water just yet. It's all milk all the time right now.

I think I covered the majority of the unanswered questions.

The good news is that the more calories we've been able to get into Ellie with the 28-calorie fortified EBM, the more she's been willing to take in general. She's even told us she's hungry a couple times (unprecedented!). She's still slow to eat and is still throwing up feeds occasionally and is definitely not loving the 28 calorie stuff, but she's eating it. I think her cheeks are even filling out a little, which is a great improvement over the sunken, skeletal look she had before. I'm still worried about keeping up my milk supply for the amount of EBM I need to provide, but at least I know that if I have to supplement with formula, I'm doing so with the support of my pediatrician, rather than with the dismissal of the GI doc, so I feel better about it. I have some milk still in the freezer, so all is not doomed, YET. I'll just take it one day at a time. I've gotten them 4 1/2 months on only breast milk. I'll get them as far as I can.

Edited to Add:
A new question from another anonymous poster:
why don't you just switch her over to formula so she can gain some weight?
Formula vs. breast milk is not the question in this case. Breast milk has obvious advantages over formula for preemies with regards to the immunities and the easier ability to digest (preemies have a harder time digesting formula than breast milk). However, there's also a misconception that formula is higher calorie than breast milk, but it isn't. Both are 20 calories per ounce. You can get higher calorie preemie formula (standard preemie formula is 22 calorie per ounce), but you can just as easily fortify breast milk to 22 calories per ounce and accomplish the same thing without losing the benefits of the breast milk. That's what we're doing with the expressed breast milk at this point... we are fortifying quite a bit more than that, in fact. We are fortifying to 28 calories per ounce, which you'll see if you read my previous post, "Failure to Thrive is Not Failure to Nurture."

I make absolutely no judgments about formula fed babies. For some people, formula feeding is the right answer. But it is not the right answer for our family, and would not solve the problem. In our case, Ellie's problem is sleeping through feeds, refusing to eat and therefore not taking in enough calories. It wouldn't matter if it were breastfeeding or formula, because when she refuses a feed, it doesn't matter whether it's a bottle feeding or a breast feeding, she won't take it. Incidentally, my pediatrician feels strongly that Ellie is the one of the triplets that most definitely should NOT be switched to formula if the need arises. Fortifying the breast milk is fine, but she needs the benefits of the breast milk as well. She's having a really hard time stomaching the heaviness of the fortifier as it is.

From Trilcat:
BTW 1. I assume that you realize that you can feed a sleeping baby?
2. Trust your instincts! Not every baby grows the same. If your baby looks healthy to you, they probably are. If she doesn't, she probably isn't.

One of the first things we were told in the NICU, in fact, is you can't feed a sleeping baby. This may be different for a full-term baby. But a preemie will choke if you try to feed them while sleeping. I know many babies will reflexively swallow if you dribble milk into their mouths (and I know that Sam will actually nurse in his sleep), but Ellie will not nurse in her sleep, and if you dribble milk into her mouth with a bottle while she's sleeping, she chokes.

As for whether she looks healthy... she does, in many ways, look healthy. She's developing well. But when you look at her compared to her siblings... she looks almost emaciated with sunken cheeks and bony legs and you can see her ribs. These are not good things. The long term effects of malnutrition would take a terrible toll on her little body, even though right now she doesn't look unhealthy in other ways.


Anonymous said...

why don't you just switch her over to formula so she can gain some weight?

hadjare said...

I feel inclined to tell your first Anon commenter that breastmilk in general has more calories than formula. Breastmilk averages 22 calories per ounce, while formula is 20.

Anyway. I have been eagerly awaiting updates on Ellie Hopefully your supply won't decrease too much -- especially if you are pumping when she would normally nurse. Or at least take a while to take a nosedive. Have you thought about, if that happens, then will you supplement Abby (since she is bigger) with formula and keep Ellie on breastmilk longer?

Lea Bee said...

i find that happens...once you get some energy in, the baby has more energy to eat. easy to go into a downward spiral the other way: no energy to eat=less eating=no energy to eat etc.

so glad to hear ellie is doing better!

Anonymous said...

Thank you for the update... I've been thinking of your little Ellie. My 10 month old had SEVERE reflux from 2-6 months of age and refused to eat the majority of the time; the only time he would readily eat was when he was sleepy. I actually enjoyed the 3 am feedings since I knew he would be tired enough to eat then (without the reflux bothering him). Also, he would ONLY take the bottle from ME and only ME (I had low milk supply so b/f wasn't an option). My life revolved around feeding him, worrying about him, etc. Fortunately, he did continue to gain weight (about 1 lb. a month)so the Dr. wasn't too concerned. He also continued to be the happy, alert, and energetic little guy he's always been. When he started eating solids, his reflux slowly dissolved. Now it's just an unpleasant memory. He's still on the small side and not the best eater but it's so much better than before. As my Rabbi told me, "this too shall pass" (the eating problems)...and it finally did. That helped me get through the agonizing days when he refused to eat. These difficult days with Ellie will pass too, of course. My thoughts are with you and your beautiful children.

The Morreys said...
This comment has been removed by the author.
Erin said...

(Sorry about that, it was me) I am so glad that you've got a better option than no breastfeeding--I was just reading the post before this and was so angry at Dr. C for her behavior and attitude about Ellie being a statistic. Then I read the rest of it and was so very thankful that you have such a wonderful pediatrician who is going to bat to make this work for you and your babies, so that all three will be as healthy as can be.

I hope that the fortified breastmilk is just what it takes for Ellie to catch up with her sister and brother. It sounds like she's already doing better, which is a relief. And you are a wonderful, absolutely selfless mama for being so committed and concerned about the health of your children!

Anonymous said...

hey there,

while I was not huge on the whole breast feeding thing, i did it for my boys, it was easy for me and I had no problems, in saying that my eldest (now 41/2 - started school today - very sad day)failed to thrive. At no time did anyone point the finger at me but it is hard not to beat yourself up when you are their entire food source. I worked very hard to get Luke to gain weight, but nothing worked, it was only when he started to become more mobile that he would look for more food( he was a great sleeper too, 14 hours a night, very lucky, not so lucky with the next!). I had plenty of milk - I was like a jersey cow! I did find that dream feeding him through the night helped (might not have directly helped him, but made me feel a little better). Both of my sons (the other is 31/2) are asthmatic and sensitive to preservitives, so I feel that my brestfeeding was a great help to them, providing them with everything they needed in regards to immunity etc. You are doing a great job, life is tuff and 'mother gulit' is hard but you are loving your babies and doing everything in your power to care for them. have faith in your abilities and your intuition as a mother.

good luck with everything
leonie from Australia
(i don't have a blog but you can find me on facebook, leonie ripper)

pam said...

just fyi - i didn't see this post when i emailed you the other day with my defensive PS about formula feeding my boys. after reading your last two posts, i hope you don't think i was saying that in reaction to your posts! :D

Anonymous said...

Thank you for addressing commenters' questions. It's really helpful to see all this good information.

Filling Ellie's tummy with water would most likely be useless, yes. Testing whether she will take a bottle of water when she is striking, however, could provide useful data.

if I have to supplement with formula, I'm doing so with the support of my pediatrician, rather than with the dismissal of the GI doc

This is such a significant distinction. Good for you for being aware of it.

triLcat said...

Good luck. This must be so hard. I wish I'd had the option of breastfeeding my baby (I had a severely limited milk supply), and I commend you for all the effort you're putting into it. You must be exhausted between pumping, breastfeeding, and just taking care of three kids.

You're absolutely right that with her being so small and delicate, she really needs to have the breastmilk. When babies get sick, they lose weight. That would be a disaster for Ellie right now. Your antibodies are absolutely essential at this point!

I'm really impressed at how seriously you're taking the problems, and I believe that you and the doctor(s) will find a solution to make Ellie grow better.

BTW 1. I assume that you realize that you can feed a sleeping baby?
2. Trust your instincts! Not every baby grows the same. If your baby looks healthy to you, they probably are. If she doesn't, she probably isn't.