Chez Perky

Teanie Beanie isn't Teanie Anymore!

Ellie finally lost her Failure to Thrive Diagnosis! We can start weaning her from the 28cal/oz bottles and she can be nursed as often as I want when I'm home and she's healthy and perfect and best of all I don't have to bring her back to the doctor for SIX WHOLE WEEKS to be checked up on! Hopefully she'll maintain her terrific growth without the 28cal/oz fortification. In fact, actually, the doctor said he wants to see her growth slow slightly, because he doesn't want her curve to be so steep forever. She's done a great job with the catch up growth and now it's time for her to level out like the NORMAL BABY that she is!!

Hopefully she'll still do okay after we wean off the 28 cal food... the last time we dropped down off the 28 cal, she lost weight pretty quickly, but that was then, this is now, so I will assume that different circumstances will yield a different result. And if she doesn't do well with the drop down, we'll find another solution.

Ellie is 14 pounds, Abby is 14 1/2 pounds and Sam is just about 16 pounds. Ellie is finally on the charts in the 4th percentile for weight, which puts Abby in the 5th percentile and Sam in the 7th. None of them are on the charts for height yet, but they're getting there. The percentiles are rough approximations, incidentally, so take them with a grain of salt.

I had a great visit today with Jessica and her five little monkeys. Pictures to come in a subsequent post!

Progress and Nighttime Feeding

I've been taking Ellie to the doctor every single week because she's been pretty stubborn about the growth thing... after that first week when she grew 18 ounces in 10 days, she stalled completely and stopped growing for a couple weeks. Sigh. BUT! Today, finally, my little Ellie bellie seems to be back on an upturn. She is over 9 pounds now, which still puts her way behind her siblings, but she's finally making some progress. She's the only baby that hasn't tripled her birth weight yet, but at least she's doubled it. The good news is that I don't have to go back until March 11th, which seems like an eternity. Dr. B. said I can come back sooner if I get a sense that she's slowing down again or she starts striking again, but if I have the sense that she's continuing to grow and she's continuing to improve, we can hold off for another 2+ weeks. Unbelievable.

Meanwhile, Abby and Sam continue to grow, but that's no shocker. Abby's got a new nighttime pattern for eating. She used to go to sleep after her 6 or 7pm feedig and sleep until about 2am and then eat and go back to sleep until about 6am. Lately, though, she's been waking up at 11pm starving (which is ridiculous, because we've actually started feeding her more than we had been). So we feed her at 11pm and then she either sleeps through the night or wakes up around 4, which isn't that far off of when we have to wake up anyway. But it's weird, and I'm not sure why she's changed her pattern. It's not that big a deal, but it's new.

Sam never stops eating. Dr. B. says that he's big enough that he should be able to sleep through the night now (calorically speaking), but every night at 2am, 4am, 5am, and 6am I have the same conversation with Sam:

Me: Dr. B. SAID you're big enough to sleep through the night!
Sam: Mommy! Please don't make me! I'm so hungreeeeeeeeeeeeeeeeee! I'm wasting away! I'll be so saaaaaad if you make me wait!
Me: But Dr. B. PROMISED ME that you're big enough to sleep through the night!
Sam (with the saddest look possible on his face, while screaming BLOODY MURDER): MOMMY! PLEASE! You wouldn't actually make me wait would you? I'm so hungry! Please don't make me! Please don't! I'm starving! Please!
Me: Well, I'm sure as heck not going to listen to screaming all night, of COURSE I'm not going to let you starve, no matter WHAT Dr. B. says.

Then after Sam's had his fill, Ellie and I go and have the opposite conversation:

Me: Ellie, Dr. B. SAID you're not big enough to sleep through the night!
Ellie: Mommy! Please don't make me! I'm so sleepeeeeeeeee! I need my beauty sleep! I'll be so saaaaaaaad if you make me wake up!
Me: But Dr. B. SAID that you need to eat more often!
Ellie (completely sleepy): *yawn* Please mommy, don't make me...*snore*
Me: huh? wha? What time is it? Can I go back to sleep now?

And then, it's usually time to have another conversation with Sam... But Dr. B. SAID you're big enough to sleep through the night!

Thank heavens J sleeps through the night!

On Breastfeeding Triplets

You're pregnant with triplets? Well, you're obviously not going to breastfeed them, you're going to spend a fortune on formula!

I heard that a lot when I was pregnant. Over and over, I heard unsolicited opinions from people telling me that there was no way I would ever be able to breastfeed triplets. It's not possible, they would say. I didn't even bother trying with my twins, I would hear. Why would you even think about it? You'll never do anything but feed them all day long if you try! the incredulous voices would cry. They'll be preemies. You can't breastfeed preemies, you know.

I never expected to be the militant type...certainly not about breastfeeding, and certainly not about breastfeeding triplets. But these constant, unsolicited words of discouragement absolutely convinced me that I was going to do everything I could to breastfeed my babies, at least for the first few weeks. My premature babies were going to NEED the benefit of my colostrum and my milk for as long as I could give it to them, and I knew it wouldn't be forever, and even during my pregnancy, I mourned the loss of the ability to just KNOW that I could breastfeed with reckless abandon, but I set a modest goal. I wanted to get 3-4 weeks of exclusive breast milk into them if I could. And if I could do that, well, we'd go for 6 weeks and after that, I would give myself permission to supplement with formula, because it would be a miracle if I made it that far.

The babies did get a little bit of formula in their first few days. My colostrum was mixed with a few cc's of preemie formula to make up for lack of volume, but they DID get my precious drops as well. In their first 3 days they received a couple ounces of formula between the three of them. TOTAL. And then I started producing enough to feed them exclusively my milk. It helped that Abby started out with 2.5 cc feeds and Ellie and Sam started out with 4cc feeds, so the demand wasn't huge from the start. They were still getting the bulk of their nutrition through a TPN at that point while they figured out the whole suck/swallow/breathe thing.

And on Day 4, my husband asked the nurse how long it would be before I could try actually breastfeeding my babies, and she checked with the doctor and got permission for me to breastfeed them. She helped me get set up with Sam and showed me how to hold him and support him, and I fretted about whether he'd be able to latch, but he did! He didn't latch on for very long, but he definitely knew what to do and figured it out pretty quickly. He tired very quickly, so we gave him a feeding through his gavage tube afterward, but it was miraculous. I had no idea how amazing an experience nursing my baby could be until that moment. It felt strange and awkward and perfect and amazing all at the same time. My tiny little three and a half pound baby knew what to do and he nursed like a little champ! How incredible. And then it was time for Ellie's feeding, but she was having a harder time, so we gave her a gavage feeding while she was nursing so that she could associate a full tummy with mommy's breast...a technique we employed a lot with her in the NICU, actually. I was shocked at how exhausted I was after nursing just two tiny babies. Abby was still too small to try to nurse, so when her turn came, I held her skin-to-skin while giving her a gavage feeding, and then I pumped afterward while gazing at my beautiful two and a half pound angel and had the best production I'd ever had before. It was amazing to see that it was all true... being around your babies really DOES improve milk supply. Who knew?

And that was my first day breastfeeding my babies. The next day, believe it or not, I was able to breastfeed all three of them, even Abby, and I breastfed them at least twice a day every day until they left the NICU and I pumped 8-12 times per day, every day. And then, on day 24, they came home. My once champion breastfeeders suddenly would not breastfeed anymore. None of them! I continued to pump 8-10 times per day, fed them expressed milk, attempted to breastfeed them at every feed, and never slept, because of the constant fight to get them to remember how to breastfeed. I thought all was lost. I developed my second clogged duct and was in misery until it resolved. And then... a few days later I woke up with painful, red, tender, swelling in my breast, a high fever, chills, flu-like symptoms... you guessed it, mastitis! The way to get through mastitis, I'm told, is to let your baby nurse as much as possible, but my babies wouldn't help me, so I gave up for a few days and just pumped, pumped, pumped, pumped and pumped some more. And gradually, it got better, and I was able to see the light at the end of the tunnel.

I thought there was no way my babies would ever return to nursing... but on the advice of a nurse, I got some nipple shields, even though lots of people told me that nipple shields would only lead to nipple confusion. Seriously...these babies were drinking from bottles, so how much more confused could they get? And lo and behold... suddenly, Ellie was nursing. Then Sam was nursing. Only Abby remained skeptical. She would latch occasionally, but would usually scream her head off at the mere mention of breastfeeding (er, that might be a SLIGHT exaggeration). And eventually I was able to rid myself of the nipple shields all together and I had two, perfectly normal nursing babies and one baby who would not nurse, but who still received only expressed breast milk.

I called the pump my FOURTH baby, because I spent as much time with her (I named her Maggie) as I did with my three babies, in order to make sure I always had enough milk for Abby. And pump, I did. I was able to reduce to 6-8 times per day without changing the amount I was producing, since I was nursing so much, and I still got lots of snuggle time with my beautiful Abby. Even today I still try to give her the opportunity to nurse occasionally, but she still hates it. She's got a tongue-tie, and has a really hard time latching, so it's not shocking that she won't nurse, but it's a little disappointing.

My babies will be five months old next week and today, for the first time, I'm faced with the need to supplement them with formula. I've finished my stash of milk in the freezer. And I'm pumping like mad. But I'm producing 40-45 ounces of milk per day in addition to whatever they get via nursing directly, and the three babies together are eating 52 ounces of milk per day, so I'm falling a little bit short on the supply. I've tried everything... domperidone, fenugreek, blessed thistle, some weird herbal concoction, reglan, oatmeal, breast compression before and during pumping... but I just can't produce more than I'm producing now, without adding additional pumping sessions in each day. I'm pumping about 6-7 times per day right now, and if I pump any more than that, I'll probably lose my job.

A piece of me feels like a big, giant failure, even though I'm obviously not going to STOP breastfeeding and pumping at this point. I'm not sure when my 6 week breastfeeding goal turned into a 3 month goal, or when that 3 month goal turned into a 6 month goal, or when that 6 month goal turned into a 6-month-adjusted goal, but I know now that I'll breastfeed as long as I can, as much as I can until they're a year old, and then I'll work on weaning them before moving on to my next round of fertility treatments. I'm not getting any younger, but I do want at least one more chance at this pregnancy thing. And I want my children to have lots of siblings. I had only one and he loathes me, so I've been determined my whole life to make sure that my children are surrounded with a big brood. They don't all have to like each other (though that would be nice), but at least the odds are good that they'll each find SOMEONE to love in the family.

But I digress. I do feel like I'm failing my children, though I don't feel that way toward any other woman who feeds their babies formula. I've told countless mothers of multiples that they should not ever beat themselves up over their breastfeeding decisions because it's HARD, and sometimes darned near impossible. And I know I should celebrate my five months of accomplishment, rather than focusing on my failure to continue the same pace, but I just can't get past it. I know very few women who made it through five months of feeding triplets only breast milk... so I should be thrilled, right?

But then this morning, the first morning that I was guaranteed that the babies weren't going to have enough of my own milk for the day, the guilt poured on. I thought it would be wise to try giving Abby a bottle of formula while there was still breastmilk in the fridge, just in case she didn't like it. After all... what would we do if she refused it and there were no other options? So when the nanny arrived this morning, I handed her a bottle of formula (no way was I going to be the one to give her the yucky stuff). Sure enough, Abby screamed her little head off. My poor persnickety Abby wanted NOTHING to do with the formula. NOTHING. I thought maybe she just wasn't hungry, but we gave her a bottle of breastmilk and, sure enough, she gobbled it right up. Sigh. Sam, fortunately, had no problem drinking the formula, little piggy that he is. Next week, I'll try making 50/50 bottles and see what happens with Abby, but oh gosh, my heart was breaking knowing how much she hated the taste of the formula! I was completely failing my child! Thank heavens I tried it out while there were still options!

In a couple months, we'll be starting them with some solids, and eventually their consumption of milk each day will go down slightly, so I may actually be able to return to being able to feed them 100% breast milk. But for now, each of them will probably get 2-4 ounces of formula each day. And I know that's still pretty amazing on my part. And I know there's nothing to be done, and no way for me to get around it.

And once again, I feel like a failure. Once again, I feel like my body is betraying me. It's infertility all over again, even though I know that logically, this is the polar opposite of infertility. Somehow, I simply MUST make myself okay with supplementing, because there's really nothing wrong with it. It won't hurt my babies. They'll still grow and they'll still be healthy. I'll still be able to fortify for the extra calories that Ellie needs. I'll still be able to breast feed any time I'm home and feed them breast milk most of the time. 2-4 ounces per day just isn't the end of the world, so why do I feel like the world's worst mommy?

~~~~~~~~~~~~~~
Also, a quick update on Ellie... at her appointment yesterday she hadn't gained any weight, but on Wednesday we were able to convince her to start taking 120 ml bottles, so we're hoping another week of that will be enough to boost her back toward gaining. Bigger babies need more calories to grow, of course, so hopefully that's all that's going on. For the moment, she is a bit of an enigma, but she's definitely improving. She's more alert, and smiling and cooing almost as much as Abby now. She looks good, but is still far more sleepy than the other two. We'll go back in a week to see how she's improved.

two steps forward, one step back

Ellie lost four ounces.

My New Favorite Number

18.

That's how many ounces my sweet baby girl gained in TEN days! So bad math be damned, it worked. I asked the pediatrician whether I should alter the recipe so that the intended 28 calories/ounce is actually obtained and he said no, because he actually wouldn't want to see Ellie gaining weight any faster than she gained this week! So we'll stick with 24 calories per ounce, but I'm going to use an actual 24 cal/oz recipe because I enjoy precision (even though the lack of precision is obviously working fine for Ellie). He said he didn't necessarily care about the precise number of calories, so long as her growth is appropriate. This, to me, is the most logical approach.

He also said that since her growth is so great with the added fortification, there's really no reason I can't add in some more flexibility with the number of times per day that I breastfeed her. I noted that during the week I would really only get one more BF'ing session in anyway, so I was less concerned about that, but on the weekend, my preference would be to breastfeed her most of the time if possible, and he said, "so if she doesn't grow as much on the weekends, so what? She's growing plenty during the week to make up for it." I love him!

Finally, he said he would leave it to my discretion as to whether I even need to follow up with a GI doc at all at this point. He'll see Ellie again in a week to make sure she's still on track, and if she's really struggling at that point, he'll help me get in to see Dr. D. But otherwise, he's not super-stressed about continued follow up with the specialist, as we seem to have found the answer we need for the moment.

Meanwhile, the scale I ordered for Ellie arrived, so that I can make sure she's taking in enough when she's breastfeeding. I weighed her on it when we got back from the doctor's office to make sure that it's accurate and then just for fun, I weighed Sam and Abby, too!

Sam: 11 pounds 1 ounce! (Admittedly, he had just eaten, so he's probably actually a little under 11 pounds)
Abby: 9 pounds 14 ounces!
Ellie: 8 pounds 10 ounces!!!!! (can you believe it!?)

On Funny Math (Updated)

You know, I thought the math on Dr. C.'s 28 calorie recipe was a little weird, but math has never been my strong suit, so I just figured I was just a dumb blonde and she was the smart doctor, so I should just do what I was told. Um, I'm not actually blonde, but go with me on this one, okay? I mean, the thought had occurred to me to run the math by my pharmacist husband, but see... I never have a lot of faith in that either... I always think this sort of thing is some secret, highly complex code that even my super-smart husband can't possibly crack and I don't want to burden him with the embarrassment of straining his intellect. I mean, it would be a horrible blow to his ego, right? And I wouldn't want to be the cause of his mid-life crisis at such a young age (he and I just had birthdays, so I'm a bit sensitive about his age since I'm catching up to him). And so, I simply followed the doctor's directions, knowing that I could never possibly understand the highly complex calculus involved in mixing 28-calorie food for my under-fed daughter. After all, I am a mere mortal, and Dr. C... well, SHE went to medical school.

Ahem.

And then Lea Bea... Dear, sweet Lea Bea, was avoiding schoolwork, so she tried out the math for me. Because, really, apparently, schoolwork avoidance=too much damn time on your hands (see, some math isn't too difficult for me!). And apparently, this math is pretty damn simple. The piece I was missing was that I didn't know how many calories were in a scoop of formula, because I'm a total moron. See, I know that formula contains 20 calories per ounce. And I know that you mix one scoop of formula with 2 ounces of water when you're just making regular formula for a baby. So it would make SENSE that one scoop of formula has... YOU GUESSED IT... 40 calories! But I am tres stupid, so it never occurred to me that it was that simple.

Dr. C's directions were VERY clear. "1 scoop formula + add breastmilk until total volume = 5 oz" Now this is the exact opposite of how you make formula. When you're mixing formula for a baby, you pour water in a bottle to the desired volume, THEN add the powder (or so I'm told... I've never actually made formula). If you put the powder in first, and THEN add the liquid to 5 oz total volume, you only need to add about 4-4.5 ounces of liquid before you get to that 5oz mark. If you add liquid first to the 5oz mark and then add powder and then shake it all up, you end up with 5.25 oz of final volume. Go figure (I'm not really sure why this works this way, and I really don't WANT to know). I remember very specifically clarifying Dr. C's instructions, because it was the exact opposite of how I'd been taught to make formula, and she was very specific that she meant to put the powder in the bottle first and THEN add the liquid. So if you do it her way, here's the math, courtesy of Lea Bea:

1 scoop formula = 40cal
4 oz breast milk = 80cal
Total = 120 cal in 5oz bottle
divided by 5 oz = 24cal/oz.

Gah! So all this time*, I've allowed Dr. C. to make me feel guilty for hanging on to breastfeeding my daughter, despite the fact that it's making her fall short of her calories because she's only getting 4, 3-oz 28-calorie-per-ounce bottles per day, plus 2 breastfeeding sessions per day (approximately 3 oz of intake per session at 20 calories per ounce)... for an estimated total of... 456 calories per day (if I've done my math correctly, but remember I've already admitted math isn't my strong suit). Ellie's supposed to be getting a MINIMUM of 480 calories per day. However, if these are really 24-calories-per-ounce bottles, she's ACTUALLY been getting an estimated 408 calories per day, which is an even greater shortfall than I thought. And that's because of Dr. C's lousy math.

According to dear, sweet Lea Bea, however, if I added the powder to 5oz of milk, I'd get closer to 27 calories per ounce, which is a lot closer to what I wanted in the first place. And I trust Lea Bea's math more than Dr. C's at this point (plus, um, my husband concurred, because apparently it's insulting that I didn't trust him to be able to do the math in the first place). But honestly, I'm not making any changes until we see our regular pediatrician tomorrow. She's barely tolerating the fortified bottles as it is. But she IS definitely gaining some weight. Her cheeks have filled out a little bit and she's more alert than she was. And she's definitely getting more calories than she had been before, so anything's an improvement.

It's just... so frustrating! There's this doctor who already frustrated me with her recommendation to stop breastfeeding all together, but I could at least understand her logic. But then I thought there was a reasonable compromised reached which I assumed wouldn't pose any serious problems for Ellie since she'd still be getting pretty darned close to her calorie requirements, when it turned out that a problem in Dr. C's math was going to cause a pretty significant shortfall! Gah!

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*Okay, to be fair, "all this time" is really only a week, but still! This is a tiny baby we're messing with!

Update:
I hate that blogger doesn't do threaded comments. Anyway, a couple comments I've gotten about the math:

It's a question of total calories vs. calories-per-ounce.
If you have 5 oz of milk and a scoop of formula, you'll have more total calories but fewer calories-per-ounce.
If you have 4 oz of milk and a scoop of formula, you'll have fewer total calories but more calories-per-ounce. It will be more concentrated.
So it's actually more a question of which is works better, filling her belly fuller with a lot of milk, or having her try to tolerate the more concentrated stuff. It also depends on how much she'll actually eat!
Hope that makes sense!!

It does make sense. However, since Ellie only drinks 3-ounce bottles (she throws up if we give her more than that), what actually matters is the calories-per-ounce. Obviously, I mix up more than I will use, and then just pour out 3 ounces worth into the bottle that I'm feeding her from.

The calculation of one scoop at 40 calories plus 5 ounces of EBM at 100 calories totalling 140 calories divided by 5 ounces comes out to 28 calories per ounce. The problem apparently is that the powder isn't volumeless. You need to use the full 5 ounces of EBM, and then each fifth of the mixture -- each 1.05 ounce -- will contain 28 calories.

This is quite correct. HOWEVER, this is only correct if this had been what Dr. C's instructions had been. Her instructions were NOT to add powder TO milk, but rather to add milk TO powder. Which meant I was adding only about 4 oz of milk to one scoop of powder. My issue isn't with how to do the math at this point. My issue is that Dr. C's math was faulty and, frankly, after her attitude last week, I have little patience for sloppy math.

I Deserve a Medal (Updated Again)

For those of you who have never had the pleasure of fortifying breastmilk for a baby, it's disgusting stuff. But it's pretty simple. You use a recipe to add formula to breast milk so that the final product equals whatever calories per ounce your goal is. When we were trying to get 22 calories per ounce, we added a half teaspoon to 3 ounces of breast milk. You could barely tell the formula was in it. Now we put a full scoop of formula in a bottle and add breast milk until the total volume equals 5 oz (so we add approximately 4ish ounces of milk). It's disgusting stuff and smells to high heaven and pours out really thickly. Yick. No wonder poor Ellie doesn't love the stuff.

But anyway, tonight I had the displeasure of going and purchasing a can of formula for the first time. Do you know how much this shit* costs??? One 16 ounce can costs $27!!! Fortunately, CVS had it on sale for $22 with your ExtraCare card, and I had a $5 coupon a friend had given me. But seriously, even $17 per can! Imagine if I was really feeding formula to my babies as their primary foodstuff! I used to say that I HAVE to breastfeed my babies because we can't afford formula for all three babies, but I had no idea that I WASN'T JOKING. I don't think I could afford formula for ONE baby if I were feeding formula full time! (Hell, I'm not sure I can afford it just as the fortifier, sheesh!)

Okay, so I have no idea how much money I've saved our family by breastfeeding triplets for this long so far, but I do know I deserve a medal. Or perhaps a new laptop. Which, um, I need because mine died a grizzly death. Now, if only I could breastfeed them all through college to save on tuition too... we'd be all set. Except, um, I don't think it works that way.

*Okay what is UP with me and the profanity lately?? I have GOT to cut this out!

Update Answer to Anonymous:
No you can't fortify breast milk with breast milk. Simmering breast milk down to concentrate it wouldn't really work and would damage the breast milk. The proteins and antibodies in the breast milk would be damaged by the cooking process. Plus, you'd have no way of knowing what the calorie concentration was. The main reason for me to keep giving my babies breast milk (aside from formula costing a FREAKING FORTUNE as I just discovered tonight) is to give them the benefit of the antibodies and other good stuff they get from me. Cooking the milk destroys that goodness. I can get the concentrated calorie benefit by simply adding formula. Processing is not the root of all evil, in my opinion. (and I certainly don't have such an excess of pumped milk that I can afford to concentrate my EBM by simmering... it would be a guarantee that my babies would end up on formula supplements, because I could never pump enough to make up for that difference)

P.S. You didn't upset me with the way your question was phrased. It's just that it's an unrealistic solution. There's no way to really calculate the number of calories you'd end up with in your breast milk concentrate, and when you're dealing with a baby who's struggling to get enough calories , it's important to really work hard to get those calories into her. Spending the money on one can of formula to use as fortifier for her isn't a big deal. It would be a HUGE deal if I were using the can of formula as intended by the manufacturer... particularly with three babies. I'd be spending a FORTUNE on formula! As it is, this can that I bought last night should last for several weeks, thankfully. I have no idea how long a can of formula would last if I were making it straight for three babies full time. I don't think I want to know!

Updated Again: Anonymous says:
and what about WIC? Maybe you make too much money to qualify...but worth a try... especially since you have triplets to feed!

If we still had only one income we make too much money to qualify, now we have two incomes. (I'm quite grateful to not qualify, mind you) On top of that, since I'm not using formula for anything other than fortifier, I only need one can every couple weeks, so the WIC benefit would be wasted on us. We can certainly afford one can every once in a while. It's just the idea of having to pay for this all the time that makes me very grateful that I breastfeed.

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.

Failure to Thrive is Not Failure to Nurture

Thank you to Emmie at "Better Make it A Double" for my subject line in her comment:

I'm so sorry you're dealing with this. I have a friend who dealt with this, and her GI put her arm around her and said, "failure to thrive is NOT failure to nurture!" She broke down crying at that point, because it gave voice to having to hear that awful term, and all the guilt she felt even though she was doing everything right, as I'm sure you are. I hope you get some answers soon. I think you're doing an incredible job with those three (plus one more).

My pediatrician said something similar as he was writing the diagnosis on my check-out form on Tuesday. He warned me that I'd see that diagnosis there, but it doesn't mean she won't thrive and it doesn't mean she's failing, "and it doesn't mean you're failing," he said. I was lucky that I wasn't freaked out by the diagnosis, but I was so overcome with emotion at how sensitively he handled that... if I'd been a different kind of mother and I hadn't been forewarned about that diagnosis code, I might have freaked the heck out. I love my pediatrician. I've known him for about ten years (long before I was married, let alone had kids), and every year he impresses me more and more. This week was no exception. Tuesday he wrote failure to thrive in her diagnosis box and referred us to a pediatric gastroenterologist. He warned me that I probably wouldn't be able to schedule an appointment immediately but told me to schedule the appointment then call him and he'd call over there and make them fit me in sooner. As it happened, the scheduler first offered me an appointment with my preferred doctor (Dr. D.) in March, but I sniffled at her and said, "I've got a four month old preemie who won't eat and hasn't grown at all in a month!" and they fit me in with a different practice member (Dr. C) the next day. My pediatrician's office faxed over Ellie's records that afternoon and life was good. Or so I thought.

Hey, did I mention I just started a new job? Fortunately, my client didn't even hesitate to say that of course I needed to go to the appointment and not to worry, the good news is I'm not working against any critical deadlines yet, so I should go and take care of my daughter. Whew. And so, on Wednesday, I took Ellie to see Dr. C, the pediatric gastroenterologist. And I hated her. HATED HER. She came in, started talking really fast, spewing numbers (I like numbers, numbers are good, but you know what else I like? I like a doctor who comes in and says, "Hi, what brings you in to see me today?" and takes some time to listen to me before they start spouting off numbers), and the breezed out of the room, back in again with instructions, a can of fortifier, and orders to return in a month to be reevaluated for consideration for an NG tube. The end. Okay, that's admittedly the Cliffs Notes version, so I'll back up. She wasn't all bad, and she did give me a lot of valuable information.

1. Ellie is 37% underweight. She should be about 5 kilos. She's um, not.
2. Ellie's eating pattern is not atypical for a preemie. Many preemies (not all) go through this pattern of sleeping through feeds, preferring to sleep rather than eat and refusing feeds because they are too sleepy. You have to sleep to grow and Ellie is trying to grow despite the fact that she does not have the caloric intake to support growth.
3. The gastroenterologist does not believe that Ellie has any additional underlying physiological or anatomical anomaly or disorder which merits investigation at this time.
4. Ellie needs to eat 480 calories per day to maintain her growth curve and up to 620 calories per day to catch up to where she should be on the growth curve. She is falling short of that by nearly 200 calories on our best days, despite our best efforts.
5. There are two ways to increase Ellie's daily caloric intake:
   1. Increase the number of feedings per day (we've tried to do this, with little success, so in Ellie's case this would require putting an NG tube back in)
   2. Increase the number of calories per feeding by fortifying the expressed breast milk feedings that she gets (we've been fortifying to 22 calories per ounce, but that hasn't done enough)

That's all the good and/or neutral stuff from the visit. The problems centered around the fact that I couldn't get a word in edgewise and the fact that the gastroenterologist would ask a question about Ellie's eating pattern, not wait for the answer (or not be satisfied with how I was answering it, cut me off and make assumptions. That drove me a bit crazy and made me feel as if somehow this was all MY fault. For the first time, I found myself clinging to the thought that "Failure to Thrive is NOT Failure to Nurture." This is not my fault. Not my fault. I had to keep repeating that to myself, because I kept feeling like, "oh my gosh, if I'd just gotten one more feeding in, or kept my records differently, or oh-why-didn't-I-try-harder-to-wake-her-up-last-night??" I hate that I allowed her to make me feel that way. I hate it. Because I've worked so hard with Ellie. I've been at the doctor every week or every two weeks. I've fortified her milk. I've pushed extra feedings. I've done everything I can, and I know that, but her rapid-fire questions and her dissatisfaction with my answers just didn't made me feel like I could have done more.

"The nice thing about babies," she said, "is that it all boils down to simple equations. They are this tall, weigh this much, need this many calories. End of story."

My baby is not an equation! My baby is a person! My baby is a miracle, an angel sent to me by Hashem! My baby is more than numbers and formulas. My baby is special, darnit!

Her instructions were to fortify expressed breast milk to 28 calories per ounce for a month and bring her back in for reevaluation. If no significant improvement, we'll admit overnight to the hospital to put in an NG tube and teach me how to do it. Oh, and no breastfeeding. All the food she gets should be fortified. Oh, and please make sure to call and schedule that one month follow up immediately, because her next available appointment is IN a month. Have a nice day.

I left there realizing that a month of not breastfeeding my daughter would mean that Ellie would never breastfeed again. I left there realizing that with Abby not breastfeeding at all, that would mean pumping a full supply for Ellie, a full supply for Abby and 5 bottles per day for Sam (he usually only drinks 4 while I'm at work, but he's been known to drink 5). That's 21 bottles I'd have to pump. Right now I pump 13 bottles per day. It's just not going to happen. I was guaranteeing that one or more of my babies was going to end up on formula, in part or in whole. I am making NO judgments about formula-fed babies, but dammit, I have worked SO hard to keep these babies on exclusive breastmilk and I'm not giving that up. And if babies really do just boil down to equations and this really is all about the math then it doesn't make sense that I can't breastfeed. I should be able to give her 480 calories worth of fortified bottles and breastfeed any additional feedings, right? It's simple equations, right? RIGHT?

I left a message for my regular pediatrician that afternoon (thank heavens he doesn't work on Wednesdays, because I never would have been able to speak rationally to him that day). He called me the next morning and I told him I really hated Dr. C. And he said, "Okay, Tell me what happened." So I told him everything I told you just now, and I told him that I really felt like an NG tube would give us the most flexibility, allowing us to add extra feeds, enabling me to breastfeed as much as I wanted to (we could even do a gavage feeding WHILE I was breastfeeding, which I did a lot in the NICU), etc. I had even said to the gastroenterologist that I felt that the advantage to the NG tube was that it would enable me to preserve the breastfeeding and she said, "Yes, it would." I told my pediatrician that any solution that eliminated breastfeeding all together was not a solution if there was a viable alternative. It's just not acceptable. "No, it's not," he agreed. He did talk through some of the risks of home-managed NG tubes with me, and there certainly are risks that need to be respected, but he also knows us well enough to know that we can handle those risks, and he also agreed with me that the benefits outweighed the risks.

"I know it seems selfish, but I've just worked SO hard to not have to put my babies on formula and in one night Dr. C has undermined my ability to produce enough milk for all three babies. I had to pull six bottles of milk out of the freezer this morning with absolutely no hope of ever getting to put any back!"

And this is why I love him. Because here's how he responded: "Karen, it doesn't seem selfish, it's self-LESS. It's the most selfLESS thing you could possibly do for your babies. You are absolutely right that you can't sacrifice breastfeeding in the long run for a short term solution." See why I love him? I LOVE him!

And so, my pediatrician said he would call Dr. C. and advocate for moving forward with an NG tube and call me back once he had spoken with her. A few hours passed and he called me back and said, "Okay, here's what I was able to negotiate..." So the new plan is:

1. I may breastfeed twice per day (She noted to my pediatrician that she had told me that I could breastfeed Ellie after a full bottle, which is true, she had said that after I'd asked the question, but his response was, "Yes, but we're talking about a little girl who we've been trying to convince to eat! She's not going to breastfeed effectively when she's exhausted from drinking a bottle!")
   
2. I will bring Ellie back to my pediatrician in one week (Thursday) to be re-weighed. If she has not made significant improvement at that time, we will admit her for an NG tube.

"How does that sound to you?" he asked, in a rather trepidatious tone. I agreed that provided that it was just a week and that the discussion would not be closed at the end of that week I was fine with it. I have also ordered a digital baby scale so that I can accurately weigh Ellie before and after all breastfeeding sessions to calculate exactly how much she's eating so I know exactly how many calories she's getting per day, even with the breastfeeding sessions.

One problem we've been having is that Ellie isn't tolerating the 28 calorie bottles particularly well. She's thrown up a couple feeds, and this is a baby that NEVER spits up EVER. My pediatrician said it probably isn't sitting well in her stomach. The advantage to the NG tube is that we could push more feedings per day and therefore lower the concentration of calories per feed, which would be easier on her little tummy. We'll just see how it goes. Even with throwing up some feeds, she got 532 calories yesterday, which was a lot more than she's been getting, so I'm a lot more confident in her ability to grow and cope than I was before.

There's honestly a lot more detail I could put into this post, but I'm so exhausted just thinking about it now that I can't bear to write any more of the details. And THIS is why I still haven't gotten around to writing something as exhausting as my birth story!

What it boils down to is that I'm NOT worried about Ellie in the long run. I'm worried only about making it through the logistics of getting her through the next few weeks to get past this point of craziness. I know that ultimately she'll grow and thrive and bring me much joy, as she already brings me so much. I love her, and her three siblings, more than I ever thought possible. I cannot imagine my life without my four precious children.

Failure to Thrive

Ellie is officially "failing to thrive". She weighed 7 pounds 7 ounces on January 4th. She weighed 7 pounds 8.4 ounces on January 22nd. We spent a full week adding extra calories to any expressed breast milk (EBM) bottles she received (3-4 per day while I'm at work, none on the weekend), and pushing feedings every 3 hours during the day.

Today she weighed... 7 pounds 8.4 ounces.

So we're going to do a trial of Zantac, knowing that it probably won't help because she's not showing ANY of the classic signs of reflux except for failure to gain weight, but also knowing it won't hurt either. And I'm making an appointment with a pediatric gastroenterologist who will hopefully have some more answers for us (though I'm not counting on it).

My poor, tiny Ellie.