Learning to love ECMO

We've had a blessedly boring 24 hours since Bonnie was placed on ECMO yesterday.  This means that the machine is doing its job--making sure her blood has the right amounts of oxygen and carbon dioxide, and also resting her heart and lungs.  She's still on a ventilator, but the settings are only high enough to keep her lungs from collapsing.  Her heart is still beating, but not with any real amount of force, because the machine is pumping her blood for her.

She's starting to get pretty puffy due to all the extra fluids involved when on ECMO.  This is an expected side effect, but this morning they added another little path to her ECMO circuit that's helping her get rid of the excess fluid to help her de-puff.  It's technically dialysis, like kidney patients sometimes have.  Her kidneys are actually working fine at the moment, they just need a little help getting rid of the fluid.  The nephrologist (kidney guy) that we spoke to this morning said that the kidneys often slow down and temporarily check out while a baby's on ECMO.  This has something to do with the fact that blood flow with ECMO is smooth rather than pulsatile (like it would be if it was being pushed by a heartbeat), and that the kidneys prefer a pulsatile flow.  Anyway, Bonnie's kidneys are still happy, but even if they slow down, everyone assures us that they'll "come back" once she's off ECMO.

The big news at the moment is that when Jonathan and I left the NICU to get something to eat this morning, I was telling her goodbye and she opened her eyes for me.  She couldn't open them much because they're almost swollen shut, but what a sweet sight it was for us.

To back up a little bit to yesterday, it was a big shock when we walked in to see Bonnie on ECMO for the first time.  I've seen plenty of pictures of babies on ECMO, but it's *so* different when it's your own baby.  Apart from the gigantic tubes of blood running into and out of her neck, the machine takes up about half the room.  It's pretty intimidating.  We've had some great nurses and ECMO specialists that have done a great job of explaining the whole deal, but my sleep deprived postpartum brain is having trouble putting all the pieces together.

The basic idea is that she has a giant catheter (tube) that's draining blood from her right jugular vein (giant vein in her neck).  It flows by gravity down to a pump type component that pushes the blood along.  So the blood then gets pushed into this magic blue box (which is about 4" square), where the carbon dioxide is removed and oxygen is added.  This step is what her lungs would be doing if they were functional.  After the blood is oxygenated, it flows back up into the other catheter in her neck, which is placed in her carotid artery.  From there, the oxygenated blood goes throughout her body delivering oxygen to her organs, and then it makes its way all the way back to the jugular vein to start the cycle again.

While we're not thrilled that Bonnie had to go on ECMO, we are so thankful that this technology exists.  Right now, it's keeping her stable and *alive*.  The trouble is that this is just a temporary fix.  She obviously can't stay on ECMO forever, so her body will have to take over at some point.  Please pray that being on ECMO is the break that her heart and lungs need to get stronger and prepare for when they have to do their job.  Also please pray for no complications from the ECMO.  So far she's doing great with it, but the risk of bleeding is a big one, since she's on a lot of blood thinners to keep the blood flowing through the circuit.

Last thing--Jonathan and I have really been touched by all the sweet messages and assurances of thoughts and prayers that we've received.  Thank you so much for loving us and our sweet little girl.  We're so grateful that we're not going through this alone.  God is good, all the time.

ECMO

So, Bonnie's CO2 levels continued to climb last night, and by this morning they were dangerously high (over 100..."normal" is in the 40's, but for her they would accept in the 60's) despite switching to a third type of ventilator (the jet) and going up on her settings.  Her blood pressure is also trending downward, despite being on moderate doses of two different medications to help with this (dopamine and dobutamine).  Meanwhile, they did an echocardiogram overnight which showed that her pulmonary hypertension is now on the severe side.  This has all been explained to me in about six different ways, and I'm pretty sure there's some cyclical connection between all these variables (like one thing is leading to another, which is in turn making the first thing worse), but I'm not positive.

Anyway, after a couple terrible blood gases, the decision was made to put our sweet girl on ECMO.  At this moment, she is in the NICU having the surgery to get it going.  They're putting two enormous tubes in the major blood vessels in her neck (carotid artery and jugular vein), which will take blood out of her body, run it through a circuit to oxygenate it and remove carbon dioxide (I'm sure there's a word for that), then return it to her body.  Many scary risks involved.  Off the top of my head we've got risk of bleeding, death, and "not being able to come off ECMO" (i.e. death).  This is terrifying.  And you know it's not good when the neonatologist is patting you on the back with a look of pity.

Jonathan and I are just waiting on the call that we can go up and see her.  Will update more when we can.  Please pray for a successful surgery and that ECMO, as scary as it is, will be just the break her body needs to recover so she can continue to be the feisty little fighter we know she is.

(On the positive side, I'm recovering really well from my C-section.  So far no need for pain meds except for Motrin every 6 hours...which is nice, because it makes it a lot easier to go to the NICU and visit Bonnie.  Also, Henry came by to visit this morning.  He saw my IV sites, which are still hep-locked and said, "Momma boo-boo."  And then, because most of his boo-boos are the result of falling in the mulch on the playground, he revised his original statement to, "Momma *mulch* boo-boo."  Can't even tell you how much I love that little guy.)

She's here!!!

Bonnie Brown Helms (a.k.a. Baby Bee) was born today via C-section at 11:24 a.m.  She weighs 7 pounds 1/2 ounce and is 21 inches long. (The surgeon was super excited that I didn't have any problems with adhesions from my previous C-section and removal of a fibroid.  Toward the end, he peeked over the curtain and said, "This C-section is going *great*. We are *winning*." Cracked me up.)  She came out pink and crying before they whisked her off to be stabilized.
While I was being stitched up, Jonathan got to go back to the stabilization room to see her a little more and even got to hold her sweet little hand.

 
In this picture, she's intubated (breathing tube) and has another tube in her mouth to suction out all the air and gunk from her stomach and intestines.  This is to give her more room in her chest so her lungs can expand and hopefully start to function.

Jonathan and I then went back to the recovery room, and after about 45 minutes they wheeled Bonnie back to us in her isolette for me to have another peek.  The neonatologist said that she's on "moderate" settings on the ventilator and that her first blood gas showed that her CO2 level was a bit too high.  She said that she might need to go on the oscillator (another type of ventilator) to help with that, but that they would try to hold off on that if she'll tolerate it.  Neonatologist also said that Bonnie's a feisty little girl, which made me quite happy :)  She needs to be a fighter to beat this.

So that's where we are.  Waiting on word from the NICU that Jonathan can come up to visit and talk with the docs to see what they're thinking about Bonnie.  I'm feeling really good considering my major abdominal surgery about 4 hours ago, but I'm pretty sure they won't deem me mobile enough to zip around the hospital for  a few more hours.

We're both so grateful that Bonnie looked so good at birth.  I know there's a "honeymoon" period when CDH babies are first born, but we're just really encouraged right now.  Please keep praying that she does well in the coming hours, days, and weeks.  Thanks y'all.

We're heeeeere.

Charleston, that is.  It's been the longest day ever, but it has ended well.  Started off with my last OB appointment where I got hooked up to the monitor (non-stress test) and they checked on the baby's heart rate, etc.  There was a fun little blip where the monitor wasn't picking up her heart beat and about three people rushed in to make sure everything was fine (it was).  And fortunately, by this point, all the staff I encountered seemed to remember me and my situation and didn't ask any idiotic questions.  Everyone was wishing us well and promising prayers and good thoughts.
After that, I zipped home to finish packing...this involved about three hours of bustling around, which is about two hours and 45 minutes more bustling than I've done at a stretch in, I dunno, 9 months?
We said goodbye to our sweet (five year old German Shepherd) puppy Zander, who will be cared for while we're gone by Zach (also house sitting for us). *Huge* thank you to him.  After that, we got everything and everybody loaded into the car and sped off toward the coast.  My brilliant plan was for Henry to have his nap in the car.  Let's just say that didn't work out so well.  Fortunately, by the time we got to our destination, he was so happy to get out of the car and explore his new place (which is awesome--thank you Crossbridge) that the lack of nap didn't seem to affect him too much.
Now that we're here and starting to get settled, I've realized how much the prospect of what was essentially a move across the state was stressing me out.  I feel so much more relaxed, which is kinda funny, considering what's coming in three days.  My explanation for this is that everybody knows it's a huge pain to move, but I guess I'm still blessedly ignorant of what it's like having a CDH baby.  I'll hold on to whatever bit of innocence I can for as long as I can.

Goodbye, familiar things. (38 weeks!)

A week from today, we will be a family of four.  I absolutely can't wait to meet our little girl, but the whole idea of what we're facing is seriously scary.  It's amazing how fast this pregnancy has gone, especially from 21 weeks on, when we got The Diagnosis.  Today was my last MFM appointment, which was completely uneventful.  It was pretty weird checking out and not scheduling a follow-up.  Everybody from the sonographer to the doctor to the check-out chick was wishing me luck (what is luck, anyway?) and requesting pictures once Bee is born.  Nice folks.  And once I left, their niceness, combined with The End of MFM Appointments, got me all teary-eyed.  I made a little stop by the yarn store to drown my sorrows  in wool and organic cotton (shout out to all my fellow knitters, especially those on Ravelry).
Tomorrow is my last day of work for quite awhile.  I have to admit that I'm pretty much checked out mentally, so hopefully none of my patients tomorrow require any advanced cognitive skills.  I warned Sarah (super friend and office-mate) that if anybody is too nice to me tomorrow, I'm going to cry.  I'll probably cry all day anyway.    It's a weird feeling knowing that, no matter what happens with Bee, I'm going to be a different person on the other side of all this.  Hopefully for the better, but definitely different.
Tomorrow is also Henry's last day of daycare until we get back in town.  I've tried to explain this to him but, you know, he's not even two years old.  I might as well be trying to teach him the fundamental theorem of calculus (I was a nerd in a former life).  Even though he doesn't get it, I know he's going to miss his friends and his sweet and wonderful teachers.  I know kids are resilient and adaptable etc etc, but taking him from his familiar routine hurts my heart.
Sorry for the disjointed post.  Just felt like y'all needed a little update, I suppose :)
To close, I'll leave you with a couple verses from Psalms that I believe are for our sweet baby Bee:

I know the Lord is always with me.

I will not be shaken, for he is right beside me.

No wonder my heart is glad, and I rejoice.

My body rests in safety.

~Psalm 16:8-9

36 weeks

Not much new to report over the past week or so.  I'm currently cruising along at 36 weeks pregnant, and my standard answer to the "How are you feeling?" question is "Tired."  (Roughly 75% of this can be attributed to pregnancy.  The other 25% I'll blame on Henry, who has decided that sleeping until 7:30 is for the birds and has been getting up between 5:45 and 6:15 for the past three weeks or so.)
OB and MFM visits have been largely uneventful.  Yesterday the sonographer had to work really hard to get Bee to cooperate and demonstrate her practice breathing.  I'm thinking she was in a food coma (as was I), following a delicious lunch which included sweet potato fries.  She finally woke up though and proved she was perfectly capable of some nice practice breathing motions, thank-you-very-much.  Last week she was equally stubborn, and when the sonographer finally got her to wake up, we got some great pictures of a very ticked off baby.

She looks more and more like Henry with every passing week.  And since Henry looks *exactly* like Jonathan (and lately my father-in-law Jerry), that means I've got another baby who I seemingly had nothing to do with genetically.  Good thing I've got such a handsome husband, eh?  Anyway, these are from the "I look just like my brother" file.  That twisty thing by her face is the umbilical cord.

We're getting really close to the finish line, friends.  In less than three weeks, our little baby Bee will arrive.  It's really starting to get real.  Baby Parker was born today in Atlanta, and at last report was going to be placed on ECMO this afternoon.  I've been keeping up with his story since we found out about Bee's CDH, and I totally feel like I know his mom Abby.  The past several of her posts have really hit home, and I've been praying like crazy for them.  Knowing that Parker is *here* already means we're one step closer to meeting our own little fighter.  I can't imagine what kind of emotional roller coaster this family is already on, but I guess I don't really need to.  We'll be there soon.

Update at 34 weeks

I had a couple appointments this week.  The unfortunate thing was that the first one wasn't exactly planned (but don't panic, because it all turned out okay).  A few days ago, around 4 a.m., I was awake for literally the 6th time that night to make a trip to the bathroom.  If you've ever been 8 months pregnant, you know what I'm talking about.  Anyway, I crawled/climbed/flopped back in bed, but couldn't go to sleep because I was having one contraction after another.  They were just Braxton-Hicks contractions, which normally aren't anything to worry about.  However, the prevailing advice is that if you have more than four in an hour (check!) and they don't go away when you lie down on your left side (check!) and drink lots of water (check!) then you probably need to call the ol' OB office and have yourself checked out.  Especially if you're only 33ish weeks along.  So yes, I was fretting about this.  I made myself an appointment at the OB office for that morning and just prayed that I wasn't in any sort of real labor.  They hooked me up to the monitor, which measures the baby's heartbeat and can detect contractions.  In 20 minutes I only had two little contractions, and Bee was wiggly with a nice variable heart rate (which they like).  The OB declared me good to go, and that was that.

A couple days after that excitement, I had an appointment with the MFM folk.  Nothing new to report there, other than Bee is up to an estimated 5 lb 7 oz!  Her liver (well, part of it) is still up, but sweet Dr. Chapman did say that not seeing it there until the third trimester is better than if they'd been seeing it up there all along.  And yet again, we discussed how none of this has any sort of reliable predictive value for how Bee will do once she's born.

I want to thank you all for your prayers and positive thoughts as we've gone through this process.  I can't say enough about how amazing and supportive my coworkers have been.  Miss Anne (first mentioned in this post) even got a prayer chain going the other day when I was having all those contractions.  And many thanks to all the CDH mommas who commented on my last post (when we first found out that Bee's liver was up) to send encouragement and prayers.

In other news of the "God is so good" variety:

• We've found somebody to house sit for us while we're gone, which includes taking care of our gigantic (but oh so sweet) German Shepherd Zander.  This is a *huge* blessing.
• The daycare that Henry goes to is helping us out in a big way.  Since he likely won't be there for the majority of the summer, they've told us that for the weeks he's not there, we won't have to pay.  (Normally we'd have to, to hold his spot...which we would want to do, because we love that place!)
• I spoke with some folks from HR who have assured me that it shouldn't be a problem getting my insurance to cover my delivery in Charleston at the "in-network" rate.  Again, huge blessing.

So thank you to everyone who has helped us in any sort of way with your prayers, support, and encouragement.  Jonathan and I are humbled by your generosity and thoughtfulness.  Please keep praying for our sweet little girl, that her lungs would be big and strong and functional once she's born.  June 7th keeps getting closer and closer...