Sunday, August 26, 2012

Time to eat, baby.

I haven't updated in the past few days because I've been pretty frustrated with the way things have been going with Bonnie.  I'm at the point where I feel like she's being held hostage in the hospital, and various random events and medical decisions are conspiring to keep her here forever. Like, "We want her to wake up and learn to eat, but *first* we're going to increase the dose of this medicine that makes her sleepy! Muahaha!"  Or, "We don't want her to gag because then she can't eat, but *first* we're going to take away one of her reflux medicines that was keeping her from gagging! HaHA!"  And the ever popular, "She needs to be hungry to eat, but we're going to keep her on continuous feeds for awhile so that her belly's never empty!"  I'm sure there is sound medical reasoning behind these decisions, I'm just not privy to it.  And from my perspective, it sometimes seems like a giant mess.

There's been lots of talk lately about possibly getting a g-tube if Bonnie can't learn to eat by mouth in the next couple weeks.  Honestly, it shouldn't be that big of a deal, but it's a big deal to me.  I don't want her to have another surgery.  I don't want some foreign object semi-permanently attached to her.  I want her to eat, and I want her to come home.  The other option for kids who can't or won't eat by mouth is a nasogastric tube (NG tube).  That's what she's got right now--just a teeny little tube that goes in through her nose and down to her stomach.  The problem with those is that they don't stay put very well.  If you're not careful, the tube ends up in a lung--dumping a bunch of milk or formula into a lung would clearly lead to disaster. Especially if you've only got one good(ish) lung to start with.  The powers that be don't like sending kids home with those because bad things can happen.  I do not want these bad things to happen, and I also don't want Bonnie to have a g-tube.  Therefore, she needs to learn to eat.

This learning to eat business is really tricky.  If you've never tried to feed a baby with an oral aversion, then lucky you.  Here's how it usually goes.  If she's awake and in a good mood, we start with a pacifier.  But you can't just pop it in her mouth like you could with a regular baby.  You have to rub it on her lip first to get her used to the idea.  You can try to put it in her mouth, but she has a pretty uncoordinated suck most of the time, so her tongue is all over the place.  If the pacifier hits the back of her tongue, she'll probably gag.  If she's having an especially gaggy day, she might spit up.  But lets say we get the pacifier going successfully.  We'll give her a minute or two to get the idea of sucking on something in her head.  Oh but wait, the goal here is actually to *consume* milk.  So then we need to get a bottle nipple in her mouth.  No matter how stealthily you switch out the pacifier for the bottle, she notices and doesn't appreciate it.  The bottle nipple is softer than the pacifier, for one thing.  Also, if you suck on the bottle, *milk* comes out.  That's all well and good, except that now there's liquid hitting the back of her throat.  Gag.  (And this is only if she actually decides to suck on the bottle.  Half the time she either chomps on it or rolls her tongue around it or just flat out refuses.)  If all the stars align, she'll take 10 cc of milk.  That's a third of an ounce.  That's the best she's ever done, and that was over three weeks ago.  For reference, "full feeds" would be about 80cc eight times a day.  So you see what we're up against. 

There are a few encouraging things on the eating front in the past day or so.  First, I think they've finally gotten her reflux medicine straightened out.  She's on Prilosec twice a day, and is a *much* happier baby now that that's on board.  She's also been less gaggy lately, probably partly because she's not so refluxy (technically she does still have reflux, it just doesn't burn and hurt as much).  Also, today I noticed she's really been interested in putting her hands in her mouth.  That's good because it will help her desensitize herself to oral stimulation.  Also good for self-soothing and whatnot.  Last, I got her to take 9cc of milk via the paci trainer today.  This is huge!  She hasn't done that in weeks!  The pacifier trainer is this cool little gadget that the occupational therapists rigged up for us.  On one end is a syringe with milk in it.  On the other end is a pacifier.  These are connected by a thin tube (same tube they use for NG tubes).  When using this device, Bonnie's got the pacifier in her mouth and I've got control of the syringe of milk.  I don't actually squirt milk into her mouth, but wait for her to suck hard enough to make the syringe move.  It's basically a really really slow flow nipple, and it helps her control the flow of milk better.  Anyway, I was so super proud of my girl that she caught on to this (for the third time...see this post and this one for why that is) today!
The paci trainer.  Cute, eh?

So, despite the above frustrations, I'm trying to remind myself to be grateful for where we are.  For one thing, I have a living, breathing (without oxygen!) baby girl that I will get to take home with me.  I pray that I never take that for granted.  Bonnie's hellish ECMO days seem like a lifetime ago, but we are so very blessed to have her still with us after all that.  Also, Bonnie's nurses are great and they love her.  I think the best gift you can give a parent is to love their child.  She often has visitors stopping by her bed to say hi and love on her.  

Please continue to pray for Bonnie's eating skills.  I know she'll figure it out eventually, but if "eventually" means 6 months from now, she'll probably go home with a g-tube.  Not the end of the world, but I'd rather not if we can help it.  

If you've read this far, I owe you some cute Bonnie (and bonus Henry) pictures.  Here you go!
Happy girl :)

What's so funny??
(Those shaved spots on the side of her head are where they were looking for a place to start an IV the other day.)

Onesie tie-dyed by aunt Ellen. So stylish.

I love this girl.

And this guy.

My handsome little buddy.


  1. I love the pictures. I don't want her to have a g-tube either but I sure want you guys to come home. I will say lots of prayers that it just "clicks" and she starts eating. Sending lots of hugs and kisses.

  2. I understand ALL your feelings completely!!! I remember the times when I felt like we were being held hostage and everything was being done in spite of the other. I also remember how strong I felt about g-tube. I was NOT going to have any part of it for Jacob. Keep working on the oral feeding. Be patient. It will come together, albeit in lots of time (and throw-ups!). We always had stacks of burp cloths near when feeding. Well, basically around Jacob at all times. There was never a spit-up. It was always a complete emptying of the stomach with just a little gag. Did I mention the laundry? Oh, my! Also, I worked it out with the nursing staff that we stopped the continuous feed at least an hour before we were going to work on bottle feeds. Trying to teach eating when one is not hungry and up to the task doesn't make any sense, does it? Maybe you could ask for that. We worked the hunger angle at home as much as Jacob would tolerate, and tube fed whatever he didn't finish. We would bolus feed though so he had time to get hungry again before the next feed. It took a lot of work to get him to bottle feed without the NG tube, but we pulled that tube as soon as WE thought that he could do it. Try using different pacifiers if you haven't already. We are a Nuk family so I really wanted Jacob to like his Nuk paci. The OT had other ideas and wanted us to only use the hospital one. Ironically, later the OT said that all different kinds of stimulation in the back of the mouth will help decrease the gag reflex. Isn't that what a different paci does?? Lots of contradiction. Needless to say, we did what we thought worked best and Jacob is a bottle eater with no tube! What about adding thickener so the milk isn't overwhelming her? It comes out more controlled. CDH babies tend to breathe faster so milk pools in the throat while taking breathing breaks causing possible choking/aspiration issues. We noticed Jacob sometimes gags not because of a gag reflex but to resist choking. Just some things to ponder... Hang in there! In time I'm sure things will all come together! I will be praying for you all!

    Good luck!