Thirty two days later...

...and I finally got to hold my girl.  It was amazing.  She feels like *my* baby now.

Two thoughts on this. 1--No mother should ever have to wait that long to hold her baby. And 2--No baby should ever have to wait that long to be held.


Nothing but good news today, friends.  In addition to me being able to hold Bonnie, she has continued to pee well, have good blood gases, and have a beautiful chest x-ray.  She also got one of her chest tubes and a drain (from her hernia repair) taken out today.  The plan tomorrow is to remove the other chest tube as well as her dialysis catheter.  Her ventilator settings are so low right now that if they wanted to wean her much further, she'd be off the ventilator and on (probably) CPAP.

So much to be thankful for.  God is good.

abcdefghijklmnoPEE!

We have pee!  I'm remaining cautiously optimistic, because her urine output has increased and then dropped off to zero in the past (like, five days ago), but from 7 a.m. to 5 p.m. today, Bonnie's sweet little kidneys cranked out 65cc of pee!  The nephrologist said he needed her to make 100cc in 24 hours in order to stay off dialysis, so if she keeps up her current rate of production, all should be well.

The dialysis situation is this:  Despite being on the paralytic (vecuronium), which was supposed to help her stay still enough not to knock the dialysis catheter out of whack, the catheter quit working sometime yesterday.  The only solution left is for the surgeon to replace it, which comes with a lot of risks (which is why they were trying so hard to make the current one work).  The plan as of last night was for the surgeon to put in a new catheter this morning.  However, overnight Bonnie started responding to the Lasix they were giving her, so she bought herself another day off dialysis.  If she keeps up with the peeing, hopefully we can officially stop worrying about her kidneys.

The big event for tomorrow is for the surgeon to close the incision from her hernia repair.  They left it open to prevent an increase in her intra-abdominal pressure (which wasn't unlikely given her tendency to retain fluid) after surgery.  Anyway, tomorrow they'll close her up.  Shouldn't be a big deal.

Since Bonnie's not currently on dialysis, they took her off the paralytic, so today she was moving around some and looking around a lot.  Very cute.  We've missed her eyes for the past few days.  Her blood gases also seemed to improve with her being able to move, and her ventilator settings were weaned a bit.  Yay lungs!

Overall it was a very good day for baby Bee.  We are thanking the Lord for the increase in urine output today--it seems that those complicated and mysterious tubules are starting to come back to life. Please pray for continued improvement in her kidney function so we can get the dialysis pump out of her room and the dialysis catheter out of her groin!  Please also continue to pray for Bonnie's lungs.  Her x-ray still looked good today, and she's only on 30% oxygen on the ventilator, so she's actually doing quite well.  But please pray that she can make steps toward coming off the ventilator.  What a glorious day *that* will be. :)

Come on, kidneys.

First, the good news.  Bonnie seems to be recovering really well from her repair surgery yesterday.  Her chest x-ray looked good this morning with nice clear lungs.  She still looks like herself, i.e. not too much swelling.  Her blood pressure, which has historically been on the extremely low side, has improved to the point that it's actually *too* high.  She's on a couple steroids (hydrocortisone and dexamethasone) to increase her blood pressure, so they're going to wean those a little bit to bring it back down.

And the not so good news.  Kidneys are still not cooperating.  I had a discussion with the nephrologist today about what the heck is going on, and his feeling is that it's something called acute tubular necrosis (ATN).  I had a physiology class about 12 years ago, so I am quite the expert on the workings of kidneys. Right.  Kidneys are complicated and mysterious, but they know what they like, and what they like is good steady pulsatile blood flow.  Unfortunately for Bonnie's kidneys, they didn't have that for at least a couple weeks (due to her blood pressure being so low, and being on ECMO probably contributed as well).  The inner workings got ticked off, which caused cell damage and/or death in the tiny (and complicated and mysterious)  tubules of the kidneys, which are required to filter her blood, maintain electrolyte balance, and--my personal favorite--make pee.  According to Dr. Kidney, these dead cells should slough off and be flushed out, and things *should* be back to normal eventually.  However, he couldn't promise anything, because if the damage was very severe--and there's no way to know at this point--there could be scar tissue, which is basically nonfunctional tissue that likely won't ever recover.  Scary thought.

Here's a handy dandy diagram for you--not to help you understand the kidney, necessarily, but to illustrate how complicated it is.

So because of all of *that* crazy business, our little Bonnie will need to continue on dialysis until further notice.  There were some major issues this morning with getting her dialysis catheter to work.  Short version is that it's very finicky and only flows well when Bonnie is in one certain position.  Since babies tend to wiggle, they ended up starting her on a continuous drip of a drug called vecuronium.  We'll euphemistically call it a "neuro-muscular block," because "paralytic" sounds really terrible.  But basically, she can't move.  She's on biblical amounts of sedation to go along with this.

Ironically, her lungs aren't causing her problems at the moment, other than needing to be on a ventilator (still on the conventional vent--woohoo!).  If her kidneys could just get with it, we might be able to make some progress.  At the very least, she'd be able to get off dialysis and we wouldn't have to worry about her dialysis catheter, paralytics, etc.

I know many of you have been faithfully praying for Bonnie's kidneys (thank you!), but let me ask that you get even more specific with your prayers.  Please pray that the teeny little tubules would unclog and start flowing freely and that there won't be any scar tissue there that would prevent 100% return of her kidney function.  And of course, we would like her to pee.  Please continue to pray for her recovery from surgery and for her lungs to remain clear and open--the ventilator had to be turned up a bit because of her vecuronium (since she can't move, she can't "help" the ventilator).

"I think this is our window."

I had seriously the best night of sleep ever last night, which is good because I was beyond exhausted.  I went to bed about two hours earlier than usual, and Henry cooperated by not getting up until 7:00 this morning.  Slept like a rock.  This was only possible because I had no idea what was coming our way today.

On our way out the door to head to the hospital this morning, I looked at my phone and noticed I had a message.  Turns out it was from *the surgeon*.  It's usually not great news when the hospital gives you a call, so my heart kind of stopped for a minute.  He said he had been by to see Bonnie this morning and she had had a great night. Looked great, good oxygen levels, even weaned down to the conventional ventilator.  What a nice little update, thank you.  Then the words that *really* made my heart stop. "I think this is our window."  As in, time to do the repair surgery.  They tend to talk about major events (coming off ECMO being another example) in terms of when would be a good window of time to do it.  Basically all the stars need to align.  Sometimes it's not easy to see when a window is available, but if you miss it, usually another will come around. Eventually.  (In Bonnie's case, there's always the chance that if you wait too long, she'll pull some crazy stunt--like getting pneumonia--that will make that window close for quite awhile.)

Anyway.  Today, the stars were aligned.  She had started looking better yesterday as far as puffiness, and today she looked downright great.  Eyes open and looking around.  Loved it.  It was kind of a funny vibe when we got to the hospital.  From the nurses, to the respiratory therapists, to the doctors, everybody was in  shocked-but-happy disbelief.  We got a lot of "Whoa, bet y'all weren't expecting *this* today, huh?".  Indeed.  But after a thorough discussion with the neonatologist, it was apparent that there wasn't a good reason *not* to do the surgery today.

They got Bonnie all primed and ready to go, and we walked down to the operating room with her.  Gave her kisses and told the medical folk that they better take good care of my baby or else.  Jonathan and I were perhaps surprisingly calm while we waited.  Had lunch, did a little knitting (me, not Jonathan), and fielded hourly calls from the OR nurse telling us that all was going well.  A mere three hours after we dropped Bonnie off at the OR, Jonathan and I were talking to the surgeon about how well her surgery had gone.  One big big praise is that she had enough diaphragm for him to close the hernia without having to use a patch. (A patch isn't ideal because it doesn't grow with the baby and increases the risk of reherniation down the road.) And of course, many prayers of thanksgiving that Bonnie made it through the surgery itself. 

Not that it matters much at this point, but today we also got an answer to the question we'd been asking since February when Bonnie was diagnosed with CDH.  What organs are up in the chest?  We were told initially that it looked like just stomach and bowel.  Then, around 32 weeks, it looked like part of her liver was up there also.  Anyway, the verdict is that just about everything that could be up was up.  Stomach, bowel, spleen, and some liver.

We are so so thankful that the surgery went well.  To keep everybody on their toes, though, Bonnie had to throw in some excitement at the end of the day.  Short version is that they unhooked her dialysis setup for surgery, and when they tried to get it going again, the catheters wouldn't flush.  There was some debate as to whether they were kinked off because of the position Bonnie was in or if there was a blood clot keeping things from flowing.  They ended up using something called TPA (can't remember what it stands for) that breaks up clots, and at last update, that seems to have worked.  Still need to hook her back up to the machine, though.  Drama.

Okay, so Bonnie has made it through two huge hurdles in her four weeks of life.  She made it off ECMO (and believe me, there were days when I wasn't sure that would happen), and now she's made it through her hernia repair.  She still has a long way to go before we can bring her home, though.  Among the things on Bonnie's to-do list are 1.) learn to breathe without a ventilator  2.) start peeing  3.) learn to eat  4.) get off the narcotics.  She also has to make it through the next few days post-op.  No reason to believe she won't do well, but we've been reminded multiple times by Dr. Surgeon Guy that the surgery will make her sicker initially.

Thank you everybody for your prayers and encouragement for Bonnie Bee.  Please continue to pray for her kidneys to get going, as well as for her healing after surgery.

Just kidding about yesterday. Sincerely, Bonnie's kidneys.

We're still fighting the battle to depuff Bonnie.  She's pretty pitiful looking still, but was stable today as far as vital signs, blood gases, etc.  Her kidneys decided to go back into hiding yet again as far as making urine, but her electrolyte levels are improving, which, according to the dialysis nurse, is supposedly a sign that they're doing *something*.  By the way, never in a million years did I think that with CDH--basically a lung and heart issue--I would have to worry about kidney function.  So many fun little surprises along this journey, eh?

In other news, the surgeon popped in today to say that unless Bonnie gets rid of a *lot* of fluid between now and Thursday (two days from now), that he won't plan to do her repair surgery until Monday.  Totally fine with me.

Sooo prayer requests!  We need Bonnie's kidneys to get a move on, for real this time.  We'd like for her to be able to come down a little on her ventilator settings.  Please pray that her lungs continue to look good on x-ray--no more pneumonia or anything crazy like that.  Her chest tube has been draining a *lot* (400 cc yesterday), and the surgeon would like to see that slow down.  And I miss seeing her sweet little eyes...she couldn't open them now if she wanted to because of all the swelling.

Answered prayers.

Good news!  Bonnie started peeing today!  (Crazy the things I get excited about nowadays.)   It's still not a lot, but it's better than the past couple days, so we'll take it. Yay Bonnie!  Still on dialysis, the pump of which looks like a miniature version of her ECMO pump.  And, like ECMO, we're glad to have it, but we'll be glad to kick it to the curb.

 In other good news, her chest x-ray this morning looked awesome.  Nice and clear, and we could even see her left lung (the smaller one).  She had good blood pressure all day today, too.  She's on a couple steroids (hydrocortisone and dexamethasone), which are likely helping with this.  The steroids are also being helpful in other ways that I can't recall (but you doctor/pharmacist types in the crowd feel free to speculate).

Blood gases today were decent.  They did have to adjust her ventilator settings a couple times when the CO2 levels got high, but they never got *super* high.

As far as her repair surgery (originally scheduled for today--postponed due to Bonnie's shenanigans), they're talking about doing it sometime late this week. Maybe Thursday or Friday.  She's still super puffy, which, for one thing, would make an incision really hard to close.  So she needs to depuff--but our friend the dialysis pump is working on that as we speak.  Also, the surgeon wants her to be a little lower on her ventilator settings so that there's room to go up if she needs more respiratory support.  Both of these goals could reasonably be met by the end of the week, so we're hoping Bonnie doesn't throw her doctors any more curve balls.

Overall a good day.  Thanks for your prayers and positive thoughts, everybody. :)

What are we doing and where are we going?

We got a call this morning just before heading to the hospital that Bonnie had a rough night last night.  Apparently some of her blood gases had been less than stellar, she had dropped her oxygen levels a couple times, and she had a couple episodes of sweating and temperature instability.  That last part they said looked similar to babies having drug withdrawal.  Bonnie *is* on a couple narcotics, but they haven't weaned them or anything, so she shouldn't be going through withdrawals at this point (that'll come later--hurray)...although there is the possibility that her body has adapted to the dosages she's on and what she was on two weeks ago seems like less medication now (did that make sense?).  She also had an episode this morning--totally freaked out when her respiratory therapist tried to change the tape on her tube.  All these shenanigans led to suspicion of an infection somewhere, so blood cultures were drawn and antibiotics were started just in case.

Well.  By the time we arrived at the hospital about half an hour after we learned all that, the focus had entirely shifted to the fact that she's had nearly no urine output since coming off ECMO, even with several doses of Lasix--a diuretic.  She's still *incredibly* swollen, and her electrolytes are starting to get out of whack.  We were warned that her kidneys would probably take a couple days to get up to speed after coming off ECMO (she didn't pee at all when she was on ECMO, but that was pretty much expected, and nobody got too bent out of shape about it).  Now that she's been off for about three days, people are starting to get antsy. So the nephrologist (kidney guy) was consulted, and his conclusion was that she needed to be placed on dialysis, which will do the job of Bonnie's kidneys while we wait for hers to wake up.

There are a couple types of dialysis.  Due to her diaphragmatic hernia, she only qualifies for one type--hemodialysis.  Conveniently (ahem.), they don't do this type in the NICU.  They do it in the PICU (pediatric ICU), but the PICU doesn't use jet ventilators, which is what Bonnie is on. Quite the quandary, eh?  I was terrified that we were going to have to move her to the PICU, where none of the docs would know her and her issues and the way she likes to operate.  After some discussion amongst the powers that be, the ultimate solution is to keep Bonnie in the NICU, but have a nurse from the PICU (who knows how to operate the dialysis pump) check in every hour, or more often if needed, to make sure everything's running smoothly.

The rest of the day we were waiting on one particular doc to insert the dialysis catheter (into her femoral vein, if you're interested).  Since Bonnie can't do anything the easy way, the doctor wasn't able to get the catheter in.  So *then* we were waiting on the surgeon to get there so he could try it a slightly different way. Holy moly.  We had to head out before the procedure got going (finally. at 7:00 p.m.), but when we called to check in, Bonnie's nurse said that the catheter was placed successfully--they're just waiting now on the dialysis folks to get the pump going.

So that was our day today.  The hernia repair, which was originally scheduled for tomorrow morning, is definitely on hold for a few more days.

Prayer requests would be the following:

• For Bonnie's kidneys to get with the program and start working.  We would love to see her less puffy soon.  It looks really uncomfortable :(
• For whatever caused last night's crazy issues to resolve quickly and easily.  Please pray that it's not a blood infection (we won't have culture results back for a couple days, but she's not acting like she's septic, so that's good).
• For her lungs to clear up.  They had been clear and beautiful for the past two days, but this morning they were basically whited out (i.e. too much fluid).
• For her surgeon to find another good window of opportunity for her repair surgery.  She can't make much significant progress toward coming home until her organs are back where they belong.

And to balance things out, here are some things we are thankful for:

• Bonnie continuing to do well off ECMO. So glad to have that machine out of our lives!
• The fact that dialysis exists.  She needs it, and there really aren't any other options.
• Bonnie's brilliant doctors and her amazing nurses. 
• Our housing situation here in Charleston.  Another shout out to CrossBridge Ministries, which is providing us *free* housing, delicious meals a couple times a week, and various other forms of encouragement and assistance.  We so appreciate everything they have done and are doing for us.
• Grandparents!  Despite my months of worrying that Henry wouldn't adjust well, he is having the time of his life here being entertained by Jonathan's and my parents.
• Henry. Man, I love that kid.  We can have the crappiest day at the hospital, but when Jonathan and I walk in the door, Henry gets *so* excited to see us (huge smile, squeal, clap, jump up and down) that   we just can't wallow in worry and fear.
• All of your prayers, cards, packages, phone calls, and text messages.  We aren't alone in this. Thank you all.