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.

Tuesday, August 21, 2012

Various bits of drama.

Things got interesting after my last blog update.  And by "interesting" I mean Bonnie started throwing up again.  It only lasted a night, but her feeds were stopped (again), and they started her on TPN and lipids for nutrition.  Meanwhile, it got to be really hard to keep an IV in her.  Two nights ago her IV went bad and she ended up missing a dose of morphine because of it.  (She's still on morphine because she's *still* weaning off all her pain meds/sedation from when she was on ECMO.)  Because she's physically dependent on morphine, this did not go well.  Major freak out.  To keep that from happening again, the decision was made to put in a PICC line, which is an IV that goes in further and is more stable than a peripheral IV.  That was yesterday.

Since the second round of vomiting, they've been going up very slowly on her feeds.  Right now she's getting continuous feeds at 17cc/hour.  That's about 2/3 the total volume of milk she was getting before this recent craziness.  We also haven't been able to work on taking a bottle for about a week. Lost time. Super frustrating.

In other news, it has become apparent that Bonnie is having a lot of pain from acid reflux.  She'll be fast asleep and then start crying and get all sad-faced like she's hurting. They checked her gastric (stomach) pH several days ago and ended up increasing her dose of Zantac (which she's been on from day 1).  That may have helped some, but they checked her pH again today because she still seemed to be in pain.  It was around 2 and they like it to be at 5 (lower numbers=higher acidity=ouch), so they added some Prilosec.  Hopefully that'll help.

Also, with all the IV fluids and whatnot, Bonnie has gotten puffy over the last several days.  She's been gaining weight too quickly for it not to be water weight, and her lungs sounded wet.  Soooo to remedy this, she got a dose of Lasix today.  Over the next couple hours, she peed off almost 8 ounces of fluid.  I can't think of a clever analogy to illustrate how much that is, but trust me when I say it's a lot when you only weigh 9 pounds.

Here are some pictures from the past few days.

Henry in a tree.  He was looking at me and doing his "surprised face".

My little monkey.

I love this guy.

Please note the legwarmers.  This is Bonnie's Jane Fonda look.
Hmmm, does something look different?  Something missing, perhaps?
That's right!  No oxygen!

Chillin on an exercise ball with no oxygen.  Occupational therapy is cray-zay.


Please continue to pray for little Bonnie Bee.  She does seem to be feeling better the past couple days, but we really need to get going again on the eating and weaning.  She'll be eleven weeks old in two days.  Time to get on outta here.

Thursday, August 16, 2012

Itsy bitsy update.

Just a quick update to let everybody know that Bonnie had a much better day today.  All her various tests yesterday came back normal and they started feeding her again through her NG tube today.  They stopped fortifying her milk (they'd been adding powdered formula to the breastmilk to increase calories so she'd gain weight), in case it was the formula making her sick.  Henry was allergic to milk protein as a baby so that's very possible.  Anyway, so far so good today with Bonnie--no throwing up, and she got some good rest.  Onward to bigger and better things.

#378 in the "Bonnie sleeping" series

And in other news, Bonnie's CDH buddy Parker got to go home today!  So excited for this little guy and his family.  God is good.

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.

Saturday, August 11, 2012

Cuteness abounds.

Not much to report (still weaning off drugs and learning to eat), but we *do* have some super cute pictures. See?

Successfully taking the pacifier (i.e. not gagging on it). Yay!

Happy girl.

98% of the time, Bonnie looks just like Henry and Jonathan. BUT, this picture looks more or less like *my* baby pictures.  Win!

Looking homeward.

Super smiley girl today.

Tuesday, August 7, 2012

Happy 2 months, Bonnie!

Today is Bonnie's 2 month birthday.  Happy birthday, little one!  She celebrated by ditching her last remaining IV access.  She's had that line in her head for what seems like forever, so it's awesome to now see  her sweet little head in its entirety.  She wasn't so sure about having it taken out at first, because it involved the removal of a bunch of tape that was stuck to her head (i.e. her hair).

Still mad, but look! The left side of her head!

The reason her IV is out is because she is all done with her IV medications, most notably her fentanyl and versed, which she has been working on weaning off of for *weeks*.  She is now on scheduled doses of morphine and ativan (which are in the same families as fenanyl and versed, respectively) and will then be weaned off of those.  The ativan seems to make her really sleepy, so we've been mostly hanging out with a zonked baby for the past couple days.  We did get some cute awake time this afternoon right as we were leaving. Behold!

If you'd like something specific to pray for with Bonnie, it would be that she catch on with learning to eat.  She had a swallow study yesterday which showed she has trouble protecting her airway when swallowing thin liquids (such as breast milk).  The plan is to work on feeding her with thickened milk (they'll use rice cereal to thicken it).  Today she was so sleepy from her new meds that they couldn't even attempt to get her to bottle feed.  The NICU pharmacist (who I love because she's brilliant and also super nice) is working on scheduling her medications so that there's a good window of awake-ness that the speech therapists can use to practice feeding.

Also, there's a new baby in the NICU that just got put on ECMO yesterday.  I talked with her mom a little bit today and she's understandably terrified.  Please keep this sweet little girl and her parents in your prayers.

Friday, August 3, 2012

These days.

Here's what's been happening with our little family over the past few days.  First, Bonnie has been working on learning to drink from a bottle.  This is always a hurdle for CDH babies, and especially those that have been on ECMO and intubated for prolonged periods of time, because of their oral aversion.  The way one of Bonnie's occupational therapists put it, "they have to learn to trust again."  As in, they have to learn to trust that not all mouth experiences are terrible.  Both her occupational therapist and speech therapist spend a *lot* of time trying to provide positive oral stimulation.  Anyway, Bonnie has a pretty strong gag reflex, and her oral/facial muscles are weaker than they should be.  She's made good progress over the past few days with learning to suck on (and enjoy) he pacifier, and a couple days ago she took some milk from a bottle.  She has continued to take a small amount from a bottle once a day since then, and we are sooo so proud of her.  Once she has her swallow study done (hopefully next week), they'll be able to work more aggressively on getting her to take all her feeds by mouth.

Bonnie working with her speech therapist Heather.

Meanwhile, back at the ranch, Henry decided he wanted to "go fishin'!".  Jonathan was outside practicing his casting, and Henry wanted to join in.

We took Henry (along with some friends!) to the Charleston Aquarium yesterday.  He had a good time running around from exhibit to exhibit.  

This is a little tube thing in the middle of the lemur exhibit (why are there lemurs in a South Carolina aquarium? Not sure.)
And here's Henry in a Jeep thing in the Madagascar exhibit.  There were a couple fish  involved in this expedition, I promise.

And here are some pictures of Bonnie from today.  She had a big day with all her various therapies (speech, occupational, physical).  Physical therapy was the last one of the day.  When her therapist put her on her belly for some tummy time, Bonnie promptly fell asleep.  Right there in the middle of the floor.  She'd had almost no sleep last night, so we just left her there.  She slept for three (THREE!) hours.  I took a million pictures of this event because it was so funny, and she looked so cute.

I am a tiny baby in the middle of the floor!

One awake picture from today.  This was taken prior to the amazing nap.  See how well she's holding her head up?  Thank you PT and OT!

A few people have asked me if we're planning on transferring Bonnie to the hospital in Greenville (where we live--about 3 hours from where she currently is, in Charleston) while she learns to eat, weans off her drugs, etc.  After much discussion with many of her doctors, we (and they) have opted not to transfer.  Her surgeon's concern is that she may end up needing a G tube (surgically implanted gadget that goes directly into her stomach from her abdomen).  This would only be necessary if she doesn't catch on with the oral feeding, but if she does need it, her surgeon here at MUSC wants to be the one to do the surgery.  If she had been transferred to Greenville, she'd have to be transferred back to Charleston for that--too many transfers, huge pain, big mess.  We're praying and hoping and believing (and would love it if you would too!) that she catches on quickly to PO (oral) feeding so we won't have to even worry about a G tube.  So far she's making good progress.  Thanks for praying for our beautiful little girl, y'all.