Wednesday, August 15, 2012

Belly issues.

CDH babies are notorious for having reflux.  Along with this often comes spitting up or throwing up, which Bonnie has had sporadically since they started feeding her (via NG tube).  It would be a little spit here and there, usually when she was upset about something.  She'd also get more spitty when her drugs were weaned because that can be a symptom of drug withdrawal.  Well, over the past 36 hours or so, the throwing up kicked into high gear.

Without getting too graphic about my child's GI issues, the summary is that overnight last night, she threw up after every feeding, in a projectile-ish fashion.  This was really not the news I wanted when we arrived at the NICU this morning.  She'd had a pretty dramatic throw-up event yesterday afternoon, after which she screamed hysterically until she finally conked out.  When we arrived this morning, they had just taken an x-ray to look for possible reherniation (and whatever else an x-ray might reveal) which could be causing this sudden onset of vomiting.  Good news=diaphragm is still intact.  Praise God.

So this morning I was holding my peacefully sleeping baby girl when out of *nowhere* she starts throwing up.  Again, in a borderline projectile fashion.  It was really pitiful, and it made her really upset.  Screaming, flailing...screaming.  I finally got her cleaned up and calmed down again, when The Surgery Resident came walking up.  (Apologies to any surgeons, future surgeons, and friends or relatives of surgeons in the crowd, but the surgery residents, as a rule, drive me nuts. Wait til your baby's in the hospital and you'll find out why.)  She was nice enough and asked lots of questions about what's been going on with Bonnie, trying to determine, I guess, if this was a problem that might require surgical intervention.  And/or to determine if it might be related to her previous hernia repair.  After the questioning came, "Do you mind if I look at her belly?"  Fine. So Bonnie got her belly poked and mashed, which woke her up and ticked her off.  Not two minutes later, Surgery Resident #2 (who Jonathan refers to alternately as "Jethro" and "The Man in Black"...because he was wearing all black, not because he bears any resemblance to Johnny Cash) walks up.  Again wants to poke her belly.  *Fine*.  Again with the screaming, ticked off baby.  Strong consideration given to answering, "Do you mind if I examine her belly?" with, "I'd rather you not, thanks."

After all the throwing up, little gal was getting dehydrated and needed to have an IV started to get some fluids.  There were also orders in place for an abdominal ultrasound to look for pyloric stenosis, and an upper GI to look for an obstruction.  And oh yeah, on top of (or because of) the throwing up, there are drug weaning and withdrawal issues going on. If you throw up your morphine or ativan, you're going to experience withdrawal symptoms because your body didn't absorb the drug...which is going to make you throw up (because vomiting can be a sign of withdrawal), which is going to make the withdrawal worse. And on and on.

At this point in the day, I was on the verge of losing it.  Watching my child scream in pain while there might be something very bad wrong with her was, frankly, terrible.  (For comparison, it was also terrible and scary having her on ECMO, but at least then she didn't appear to be *suffering*.)  To avert a nervous breakdown--because I'm not sure my insurance covers inpatient psychiatric care--Jonathan and I got the heck out of Dodge and went to lunch and ran some errands.  By the time we got back a couple hours later, the clouds had parted and all was right with the world.

Bonnie was peacefully sleeping, receiving refreshing fluids through her shiny new IV.  She had already had her abdominal ultrasound and upper GI, and preliminary results of those looked good.  It's still pretty unclear why she suddenly started vomiting every single feeding, but at least it doesn't appear to be anything anatomical that would require surgical correction.

Please pray for Bonnie's belly troubles and that she can start tolerating her milk.  They're going to try to resume her feeds tomorrow and see how she does.

Some pictures!  First one is from a couple days ago, but it's here because she's so flippin cute.

A couple days ago--hanging out with Momma.

Sleeping peacefully after this morning's ordeal.  By the way, look at those cheeks!

IV in her sweet little hand.

Ye Olde IV Pump.

Jonathan took Henry to the beach yesterday and they had a big ol' time:
Surveying his kingdom.

Playing in the sand.

Tasting the ocean. Mmmm, sanitary.

Artsy shot with the three Henrys.  Real Henry, Shadow Henry, and Reflection Henry.

5 comments:

  1. Henry looks sooo big! Hoping and praying for Bonnie's belly issues to magically/miraculously resolve on their own and for the surgery residents to take a hike with all their belly poking.

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  2. Boo to belly issues. Alas, I feel that they will be part of our lives for many moons. Still, I am pleased that she didn't have anything major pop up! Hurry home, Bee!

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  3. Hi there, firstly I'd like to say, Bonnie is such a beautiful little girl!! The pictures make me want to reach out and hold her.
    My daughter was on ECMO 9 months ago because of PPHN. Though your journey is different from what we went through, I just wanted to stop by and give you a hug and leave you my email id if you ever want to talk (keyagal@gmail.com). My daughter has right vocal cord paralysis and aspiration issues. She passed the swallow study with a thickener called "simply thick". It is a thickener that can be used with breast milk. She still uses it to this day. We use "nectar" consistency of thickener. Initially, it was a lot of work for her to drink the thickened milk from the bottle, because she would fall asleep after 10 ml. But she slowly learnt to take more by bottle. She also had issues of throwing up the milk, so they would give her nasal feeds of 90 ml or so over couple of hours, so she could tolerate it. We came with an NG tube, but two weeks after coming home, she was drinking most of her milk by bottle. We decided to remove the NG, and miraculously, she started consuming all by bottle! The NG definitely bothers them I think when they drink. Also, when she had withdrawal problems from the drugs, she was given phenobarb to help alleviate withdrawal symptoms (you could ask the docs about this?)
    Anyway, this is one long comment. But if you have questions, concerns, or just want to vent, please feel free to email me.
    I hope Bonnie does better, and grows strong, so she can come home soon. Please give her a tight squeeze from me. Praying for you and your family....

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  4. Thanks for keeping us updated, Leslie. I have been enjoying the sweet pictures of your two precious little ones. May God give Bonnie and your whole family the strength you need for each day.

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  5. i didn't see you at all on wed, and i'm so sorry to hear ms. b had such a rough day. i know she's doing better, but i hate you all going through that. prayers for bonnie's perfect feedings are on my list.

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