Things I don’t know how to tell you

I’m sure you’ve noticed blogging has been lighter again recently.  We’ve had a lot of medical appointments in the last month, but I still haven’t figured out what to say about them.

We’ve also been doing a lot of this lately. I’ve had migraines almost daily since Thanksgiving.

“Failure to thrive.”  That’s been getting tossed at us on and off all month.  What the hell kind of name for a medical condition is that anyways?  It’s right up there with incompetent cervix and hostile uterus.  What I hear when someone says that is “you are clearly doing this parenting thing all wrong and it’s making your child fail at being alive”.  Either that or my child is being called a failure.  That’s really not a good feeling to have and it’s not accurate at all.

I don’t know the meaning of the word fail.

Failure to thrive simply means the kid isn’t growing the way the doctor says she should be.  He says she needs more milk and less solids.  She needs to consume more puree and less finger food.  I say someone should tell her that, because I can’t make her do anything.  Force feeding her bottles is awful and barely worth the effort since she’ll spit up what little I get in her.  I can pry her mouth open and jam in a spoon, but she’ll just scream and refuse to swallow.  I can’t make my child eat if she doesn’t want to.

I like my chicken and stars much better in my hair.

Our pediatrician finally sent us to the gastroenterology clinic (45 minutes away, of course) to see what to do.  The food I get in the baby doesn’t stay down.  She was switched to Prevacid, but it doesn’t really work better than Zantac (it does, however, cost me 4 times as much).  The GI talked about running scans and trying $500 a month formula (I have a chest freezer full of frozen breast milk, so that made me want to sob) and not letting her eat any of her favorite foods.  Then they plotted her weight out on their fancy charts and said never mind.

You dragged me on a 1.5 hour round trip car ride for that?

Seriously, I spent weeks feeling awful and was told her weight gain is fine, 10 pounds in 8 months is plenty.  Yes, there is a very really chance that she has a mild milk protein intolerance, but it’s not worth doing anything about it.  Just add melted butter to her baby food and relax.

Screw your butter, I only eat pumpkin roll

As an aside, butter to increase calories in baby food is a terrible idea if your baby may have a milk protein issue.  She was blowing up like a volcano for days before my brilliant friend Kim suggested we try coconut oil.  Coconut oil melts like a dream and is higher in calories, so it actually works perfectly for us.  When she eats baby food or scrambled eggs.  Mostly the kid refuses to eat anything other than pumpkin roll.  I’m screwed when the season ends.

Don’t lie, I also ate turkey a few times.

Anyways, I don’t know how much the kid has gained since then and I don’t know if I care.  It seems a little unfair to expect her to catch up on weight that fast.  She didn’t really grow in utero after week 25, so she came out much smaller than a 31 week preemie.

In better news, her adorable tininess means she was perfect for the part of baby Jesus in the Christmas pageant.  I think she may be the oldest baby Jesus of all time.

I need headshots, mommy. I’m gonna be famous!

Anyways, the kid and I are road tripping to the Cleveland Clinic in a few weeks to get her plagiocephaly analyzed.  Basically, her head is kind of flat in the back and she might need a cranial band (helmet).  It’s a very common condition in preemies.  I am terrified of taking her out of her normal routine and spending hours in the car.  We are also staying overnight with my “uncle”, so she’s going to be sleeping in the portacrib for the first time.  I’m terrified.


About Sarah S @RunningOnWords

Married 20-something in flux and trying to cope by running and occasionally crafting.
This entry was posted in Leapster, Parenting, Preemie. Bookmark the permalink.

12 Responses to Things I don’t know how to tell you

  1. Terzah says:

    Ugh. I’m so sorry you’re dealing with this. Everyone I know who has a small baby (usually a girl, not always preemie) seems to get dealt the “failing to thrive” card, and it’s so irritating. I’m glad the second opinion was a better one. I think she looks great (and I bet she was the perfect baby Jesus–I wish you could bring her out here–my church is still looking). I also hope the trip goes well. I hear you on pulling babies out of their routine.

  2. TriGirl says:

    Oh, failure to thrive is such a yucky term. I can tell you that I never feel that it is the parent’s or the child’s fault when they come to me with that diagnosis. Are you working with a dietician? I know ours recommends more than just butter. I think the coconut oil is a great idea! Avocado is a good fat too, and easily mashable 🙂 Good luck with it!

  3. Kara says:

    She looks like a thriving happy baby to me. Starving babies rarely smile that much 🙂

    Was the 500 dollar formula Neocate?

    I miss butter.

  4. Army Amy says:

    Every time you post pictures I think, “She’s already doing that? She looks so grown up!” Every time. Your kiddo is for sure thriving. Whatever, but poo-poo on the terminology.

    As for the helmet, my bestie’s baby (also a preemie) had to wear a helmet, too. (She got it off not too long ago. Yippee!) Mary Beth hated the helmet but decided that if her baby had to wear a helmet, she was going to decorate the heck out of it. They put big ol’ bows on there, stickers, it was pink. I thought it was adorable. And now she has an adorably round head.*

    • I have to admit that I always feel better when you tell me Mary Beth went through it too. It’s so easy to feel totally alone in all this preemie stuff!

      • Army Amy says:

        It’s so funny you say that because when her baby was born, she read your blog and also felt better about all the preemie stuff she had to deal with! I’m like a preemie match maker!*

      • Mary Beth says:

        Hi there! I know we’ve never officially met… But I keep tabs on you through Amy. 🙂 I hated the helmet.. Hated it. But in the end I decided to make the most of it and I’m glad we did it!!

        It can feel very isolating to having “that baby” with the extra appointments. I totally feel ya girl!

  5. Poor girl. She looks SO happy, though, so you’re obviously doing things right! Good luck with everything.

  6. Erin O says:

    Once medical concerns are ruled out, I recommend reading My Child Won’t Eat by Carlos Gonzalez for reassurance. Sounds like it’s about picky toddlers, but he starts with breastfeeding and introducing solids. He makes an argument that babies will eat what they need to eat and height/weight charts are not reliable for all babies. Good luck in Cleveland!

  7. Laura @ Mommy Run Fast says:

    What a great idea to use coconut oil! I love that stuff. Why do doctors get parents so worked up? Failure to thrive is a ridiculous term. You are right, you cannot force her to eat, and I agree with Erin’s comment that babies will eat what they need. Of course, if there’s some kind of food intolerance, you need to figure that out, but trust your instincts about her health, especially if she’s a happy kid.
    Traveling and sleeping in new environments- that’s always terrifying. I still hate taking L out of her routine. We all sleep less, but at least it’s temporary!

  8. Mandy says:

    I think your baby is perfect. And so is her mom. And we all know that my opinion is the only one that matters. :~P

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