Friday, February 01, 2008

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.

15 comments:

Jan said...

I just had a thought that I would share. It's not necessarily an earth-shattering one, though, so don't buckle your seatbelt. One thing you could watch for, and ask about / have Ellie evaluated for, is whether she has some type of sensitivity to taste or texture (some degree of sensory defensiveness or dysfunction). I work in early intervention and have seen other little ones that find something annoying them with the feedings. I don't really know a lot - I'm not an occupational therapist - and it may be too early to determine this, but it's something to be aware of.

I hope things start looking up for you. It sounds like your new efforts are starting off well! BTW - I am SO IMPRESSED by your fight to keep BFing. You really are quite an exceptional mother!

Ewokmama said...

I just want to say that you are amazing and keep up the good work! You are such a wonderful advocate for your children, such a great mama bear. I will be sending *grow* vibes Ellie's way!

My Reality said...

There is one thing I am sure of - you will do whatever you can for your little girl. Look at what you have gone through to get them here. Everything you have done has been for their best interest. You will make this work, Ellie will grow and you will succeed.

You are supermom, really. You will get through this, Ellie will catch up and thrive. She will not only thrive in the growth department, but all of your children will thrive in the love department. They are all lucky kids, all 4 of them to have such fantastic parents who love them and would do anything for them.

Casey's trio said...

Karen,

I just wanted to comment on what an awesome job you are doing. You are a fantastic mother and I'm sorry that Dr. C made you question what you have been doing (even if it was only for a moment). I know that Ellie will get past this and that you have her best interests at heart. Continue to follow you well-educated, well-thought out mommy instincts!

Hugs,
Casey

Catherine said...

I'm so sorry you had to go through that. If you are interested in changing GI docs, I really like ours (can't stand her staff, but that's another story). She has an office in Rockville and one in NW DC.

Good for you for fighting to keep breastfeeding. I really admire that.

Thalia said...

What a devoted mum you are. Not that we're all not devoted, but this is a tough tough thing to handle and you are coming through so well. Well done for advocating for the right answer for you and Ellie.

Jessica said...

I still read it all. And I still cried. b/c I'm that much of a dork... gah...
Love you!

Krissy said...

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? Maybe that is less calories than the formula...my son (a twin) has been spitting up non-stop since he was a few weeks old. At 6 weeks, the peds told me to add 1T per 3 oz's to help with the reflux. IT DID NOT WORK. And I know that this method is not recommended by all peds...BUT, he did seem to grow at an exceptional rate, and I wonder if it isn't the extra calories in the rice cereal. At 8 1/2 months of age, we still thicken his bottles of EBM, because it does help a little. Yep, I am mooing along with you, every day, 3 times a day.

Brava on the breastfeeding! And even more so for being a great mom, who obviously will go to great legnths for her little ones. I continue to be in awe of triplet moms, and anyone who has more than two kids. You guys are my heros!

Anonymous said...

It is so clear that you are an exceptional mother. Your children are as fortunate to have you as you are to have them.

Emmie (Better Make It A Double) said...

You are amazing Karen- an incredibly dedicated advocate for your children. I'm really impressed with your ability to handle it all so rationally and effectively when it's so hard.

Laura McIntyre said...

Poor Ellie, i don't think anyone who has been reading would think it was failure to Nurture . You always sound like an amazing mummy.

I really hope you manage to keep up the breastfeeding, im amazed the amount of people that give up in early weeks - you are an inspiration to everyone

Chris said...

You're such a wonderful mother. Good thoughts for Ellie heading your way.

The Dunn Family said...

You are such a great mom. I'm so glad you called your pedi and held your ground about the breastfeeding. I really hope that Ellie starts to gain some weight for you soon!

ms. c said...

Really, Karen... you are not just supermama, you are superwoman.
Your ability to handle such situations simply amazes me.
Thanks for the low-down. I`m constantly thinking of Ellie, and wishing her steady growth.
(and hugs to the other kids too!)

Anonymous said...

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?