First full day off ECMO

It was a pretty good day today.  Bonnie is happily and steadily chugging along off ECMO, with good blood gases, good oxygen saturations, and not-great-but-we'll-take-it blood pressure.  She's still on the jet ventilator, but they've been able to wean her settings ever so slightly.  The consensus is that any changes need to be made slooowly, because she doesn't like to pushed.  Bonnie was extremely puffy today due to all the fluid she's had to have to get her blood pressure up, but she's starting to have some urine output (none at all for the past couple weeks on ECMO, which is an expected side effect), so that should help eventually.

The plan right now is still to do her repair surgery on Monday.  I admit I'm nervous about it, because to this point, any little procedure seems to throw her off track for at least a couple days.  This surgery is a *major* event, and we've already been told multiple times that babies get sicker for the first few days afterwards. (Somebody remind me of that when I'm freaking out about how she's doing 24 hours post-op.)  With that in mind, here are a few prayer requests:

• We would like Bonnie's blood pressure to become more stable.  This has been an ongoing struggle from day one.
• We'd like to see her urine output increase in a big way so that she can de-puff.  (And also to prove that her kidneys are working again after taking a little ECMO break.)
• Please pray that her blood gases remain good.  Her particular challenge is her CO2 levels.  Her oxygen levels have been stellar, for the most part.
• We would love for her to be able to wean down from the jet ventilator to the conventional vent by surgery day.  If not, we need her to be on the lowest settings she can handle on the jet.  This is so that, in the time following her repair (when everyone says she'll get "sicker"), they'll be able to increase her ventilator support if needed. I.e., if she's already maxed out on her ventilator settings when she goes to surgery, there won't be any more options to help her out.
• In general, please pray that God would prepare her little body to handle this surgery.  It's a major surgery, and she's still a very sick baby.

We truly thank you for all the prayers you've lifted up for Bonnie.  I honestly believe that's how she got off ECMO.  God is good.

Another quick update and some pictures

So, the quick update is this.  They ended up putting Bonnie on the jet ventilator because of her CO2 levels.  This is likely because of all the fluid she had to get to keep her blood pressure up during the decannulation--causing her lungs to get sort of congested and the ventilator to be less effective.  Once they can get her fluid volume situation straightened out, she should be okay.  Please continue to pray over the next few days that she does well off ECMO.  We would love for her to be back on the conventional ventilator by surgery day--currently schedule for next Monday.

And now, some pictures.  First, we have the ECMO machine.  It's enormous, and this is just before it got to take a hike.

Here's Bonnie and me.  This is just a couple hours before she came off ECMO. Sweet girl.

And here's Bonnie off ECMO!  The giant tubes o' blood used to be attached to the right side of her neck.  Not anymore!

Bonnie and Daddo (as Henry calls him).  He looks super happy because his baby is off that blasted machine. :)

And just because he's adorable, here's Henry.

And she's off!

Bonnie totally rocked her low flow trial last night with good blood gases and overall good behavior the whole time.  Thank you all for your overnight prayers!  She then proceeded to do well with her clamp off trial, so mid-afternoon today, she was taken off ECMO. We're *thrilled* that after 20 days on the most complicated piece of medical equipment known to man, she was able to come off and will hopefully have her hernia repair surgery on Monday.

Her initial blood gases off ECMO weren't stellar, but we're hoping they'll stabilize quickly after she gets more settled following her decannulation.  (In theory there's no reason why they shouldn't be as good following her decannulation as they were when she was completely clamped off ECMO.)  Please continue to pray for our baby girl and her lungs, that they would continue to stay clear and open (the right one anyway...jury's still kind of out on the left one).  Also please pray that her blood gases will improve enough that she can stay on the conventional ventilator and not have to go on the oscillator or the jet ventilator.

Bonnie still has a long way to go before we can bring her home, but getting off ECMO was a *major* hurdle that we're happy to have behind us.  Thank you all so much for your continued prayers for Bonnie.  I'll try to post some pictures later tonight!

If you're an insomniac...

I happen to not be, but if *you* are and you're awake at any point in the night tonight, please send a little prayer up for Bonnie Bee.  Her doctors are thinking that she's getting close to being able to come off ECMO, so they've decided to do an extended low flow trial.  They started it around 3 p.m. today (Thursday) and will continue all night tonight and into tomorrow morning.  If that goes well, they'll do a clamp off trial (where she's completely off the ECMO circuit and just being supported by the ventilator) for an hour or so.  If she does okay with that, she'll most likely be decannulated sometime tomorrow afternoon.

When we left the hospital this evening, she had been on the low flow for about three hours, and her blood gases were still good.  They had to turn up her ventilator settings a little after the first blood gas because her CO2 was starting to get too high, but after that adjustment, she started doing well.

We got a new neonatologist today (those folks have some kind of crazy rotation schedule), so no more of our beloved Dr. Jenkins for awhile.  The new doc we'll call Dr. A, who we had been warned about.  He's advertised as being brilliant but not being especially warm and fuzzy or encouraging.  Let's just say that I found this to be true.  I think I can learn to like him as long as he keeps doing good things for Bonnie, though.  :)

We are thrilled that Bonnie has gotten a good start to her low flow trial.  Please pray that she continues to do well overnight.  The real test, though, will be the clamp off trial in the morning.  She *has* to do well on that to come off ECMO.  There are several reasons why it's important for her to get off ECMO soon, but the main one as far as I'm concerned is that the current plan is to do her hernia repair early next week whether she's still on it or not.  Major surgery while on ECMO (and the accompanying blood thinners) isn't what we want.

So.  If you happen to be awake for any brief moments in the night tonight, we would love for you to think of Bonnie.  Thanks, friends.

"We need at least two more days of this."

Of good behavior, that is.  Finally, *finally* we seem to be making a little progress.  Bonnie's x-ray looked good this morning. Praise the Lord.  She's back on dopamine for her low blood pressure, and the prevailing opinion seems to be that she'll need to stay on it at least until she gets off ECMO.  Overall, her blood pressure today was good.  There is a lot being done to keep it that way, but being on meds for blood pressure is much preferable to being on ECMO.

They're weaning her ECMO flow very slowly at this point and tinkering with ventilator settings as well to keep her right lung open (still can't tell much about the left lung, although the word on the street is that they could hear breath sounds on the left side today).

So, when Dr. Jenkins came in today she looked pleased and said that she was happy with Bonnie's progress and that she needs at least another couple days like this and then we can talk about getting off ECMO.  We could really use your prayers that Bonnie continues to improve so that this can happen.  Her lungs need to stay clear, her blood pressure needs to stay up, and her blood gases need to be good.  I really believe that her good day today was an answer to the hundreds of prayers I know have been lifted up on her behalf--thank you thank you thank you to everyone who prayed for, sent good vibes to, or even thought about Bonnie in the past 24 hours (and her whole life, really).  Please continue.  And praise Him--the Healer, the Great Physician--for getting her this far.

Also many praises to God that our sweet little buddy Jude Morrison finally went home from the hospital today!!  Many of you follow this blog through Jude's, but in case you don't know his story, he was born on December 6, 2011 with CDH.  He's been through just about every possible complication, but by God's grace and with countless thousands of prayers, he made it!  We are so thrilled for him, but even more thrilled for his parents, Rose and Brian, that they finally get to take their little boy home.  So happy for you guys :)

The roller coaster continues.

Alright, friends.  We need lots of prayers that Bonnie will start making some major progress in the next day or so.  I'm becoming a fan of bullet points, so here you go:

• Her right lung (the good one) has been whited out on x-ray for the past two days, and they're wanting that to clear up before they try to wean down her ECMO settings.  Please pray that all the interventions they're doing to help with this (working with the respiratory therapist, adjusting ventilator settings, etc) start working *soon*.
• Bonnie had an echo today that showed that her ductus (which I attempted to explain in a previous post) is still open.  So far this is a good thing.  Please pray that it stays open as long as it needs to--to help with pulmonary hypertension.
• And speaking of pulmonary hypertension...her echo today showed that it hasn't changed much since the last echo.  I.e., she's still got it and it needs to go away.
• Her surgeon popped in today and, among other things, made the following comment, "I think she's shown that her pulmonary hypoplasia [underdevelopment of her lungs] is worse than we thought initially."  Please pray that Bonnie proves him wrong.  And keep your negative comments to yourself, Mr. Surgeon Guy.
• I had an interesting discussion with Bonnie's neonatologist (Dr. Jenkins, who we love to pieces, and who is brilliant) today about her issues with low blood pressure.  One of my personal theories is that when the heater on her bed kicks on, her blood pressure goes down.  I've seen it happen, and it makes sense from a vasodilation standpoint (i.e. the heat makes her peripheral blood vessels open up more, which causes a drop in her BP).  We were talking about how I myself tend to drop my blood pressure if I get too hot (or hungry, dehydrated, or tired), and Dr. Jenkins thought Bonnie's BP issues might *possibly* be similar.  Anyway, the whole thing has got the doctors stumped, so please pray for wisdom and insight into what's causing her low blood pressure and how best to manage it.

This was a rough day for me, y'all.  I'm so ready for her to start making progress toward coming off ECMO, and for the past three days, there has been no progress at all.  It wouldn't be so bad if she hadn't already been on ECMO for 17ish days.  She's getting to the point now, though, that her doctors are getting antsy to take her off due to the risks of being on for so long.  Jonathan has been reminding me that we expected her circuit change to be a setback for her, and indeed it has been.  On the positive side, Dr. Jenkins has said more than once, "I think she can do this."  Praying that she's right.  Also on the positive side, our little gal was awake and alert for a good chunk of our time at the hospital today.  We had lots of chats with her about how she needs to start behaving so we can bring her home and buy her a pony and whatever the heck else her little heart might desire.

Still on ECMO, hanging out.

Another little update for y'all.  So, yesterday morning there was some concern that Bonnie's ECMO circuit (all the tubing and such) might need to be changed.  With any ECMO circuit, after awhile, clots start to form in the tubing and there's a risk that they'll eventually clot off the oxygenator.  The oxygenator is this cute little blue square that is *extremely important* in the whole ECMO process, and if it stops working, bad things happen.  Best to not let it clog up with platelets and such.

Changing a circuit is quite the operation.  In addition to the process itself, it tends to be another setback because the body's immune system has to react and get used to the new tubing.  The immune/inflammatory reaction is the reason Bonnie got so puffy when she was first started on ECMO (well, that and the massive amounts of extra fluid that were required to get it going).  It can also cause the lungs to "white out" on x-ray.  This has something to do with fluid in/around/on the lungs.  It's not a desirable scenario, but it's usually not too hard to fix (or it hasn't been for Bonnie, at least).

Anyway, Bonnie's doctor felt that the circuit was on the verge of needing to be changed but that it might last a couple more days if we needed it to.  Just as a little test, they did another quick clamp off trial to see how she'd do.  The theory was that if she did great on it, she might be able to come off ECMO before the circuit called it quits.  If not, it would be best to change the circuit in a controlled environment rather than wait for it to become an emergency.  You may have concluded that since I am not bouncing around declaring that we're off ECMO, that it was the latter scenario that played out.  Indeed.  When she was clamped off, her blood pressure took a dive (we've been battling her low BP since day one), and her oxygen levels went down.  Overall, though, the doc thought she did somewhat better on this trial than on her first one a few days ago.

So they changed her circuit late yesterday afternoon, which was completely uneventful.  When we went to visit last night, she looked comfortable, but a little puffy around the eyes.  Not nearly as bad as when she was first placed on ECMO, though.  Today, she looked slightly less puffy, and amazingly, her chest x-ray this morning still looked good (i.e. not whited out).  We're hoping that since her right lung still looks good, that she'll be able to make some good progress soon, despite the circuit change.

The current plan for our girl is to wean down her ventilator settings toward "rest" settings, then work on weaning her ECMO settings, *then* having a conversation about when she might come off this blessed piece of technology.  (My understanding of ventilators is hazy at best, and I'm not even going to try to get into what rest settings are, why they exist, or how she ended up on higher-than-rest settings in the first place.)

In other news:

• The most recent echo showed some improvement in her pulmonary hypertension--please pray that it continues on its way down and out.
• Bonnie's pneumonia seems to be clearing up nicely. Another answered prayer.
• Her chest tube has started draining again.  Not entirely clear on why this is, but hey, at least she's got a chest tube to get rid of the fluid instead of having it build up again.

And some answers to a couple commonly asked questions:

• Henry (who will turn 2 in two weeks! how did this happen?) has adjusted well to his new routine.  He's been having a blast for the past three weeks with my parents, and now Jonathan's parents are here to entertain him.  He does miss his teachers and friends from school, though.  Shout out to Susy, Cheryl, Audrey, and the love of his life--Hayli. :)
• I'm taking care of myself, I promise.  Somehow sitting in a NICU for 8 hours a day patting on a soft baby head and watching vital signs on a monitor is really exhausting--so I sleep *really* well.  I'm also eating really well, courtesy of the hospital cafeteria, my mother, and amazing volunteers from Crossbridge who bring us meals twice a week.

Please keep praying for Bonnie, specifically her lung function and blood pressure issues.  Those are her problem areas at the moment that are keeping her from getting off ECMO.  We would *love* for her to be off in the next couple days, but only if she's ready, of course.  

Short update--good day!

Another good day!  Bonnie's pneumonia is definitely improving, and her chest x-ray today looked great!  A nice clear right lung, and for the first time, they could see her itsy bitsy left lung (the one that's been squished by all the extra organs in her chest).  Her chest tube has slowed way down as far as drainage, and it doesn't seem to be bothering her as much anymore.  They did increase her fentanyl drip, which I'm sure helped with that, but I was so glad not to see her in pain today.

Right now there's not a definite plan, but there's been some talk of possibly taking her off ECMO early next week. We would loooove for her to be off, but we're still praying that it won't happen until she's good and ready.

Please continue to pray that Bonnie would keep moving in a good direction.  The pneumonia and her need for a chest tube were definitely setbacks, but as far as complications go, it could have been so much worse.

Many praises.

So many answered prayers today, friends.  We've been praising and thanking God all day.  

First, Bonnie's pulmonary hypertension was looking somewhat better today.  Whether that was because of the new medications she's on to help with that (sildenafil, milrinone), the fact that they got her ductus to open (part of fetal circulation that closes at birth--they gave her a medication-prostaglandin-to help it open back up, and it acts as a "pop off valve" so that her heart doesn't have to work so hard to pump blood through the blood vessels in her lungs), or that her pneumonia is being treated, we're not sure.  It's probably a combination of all of the above.  We're just thrilled that it's looking better, and pray that it continues to improve.

Second, her pneumonia seems to be improving.  Her x-rays still don't look great, but apparently it can take a couple days for the x-ray to "catch up" with what she's doing clinically.  They heard breath sounds today (which they hadn't for a couple days), and they've been able to suction a lot of secretions out of her lungs.  Also, her tidal volumes (amount of air her lungs are accepting from the ventilator) are better today than yesterday.  All of these are good signs.  Praise God.

Third, while her chest tube is still draining, it has slowed down a good bit.  They want to make sure that the chylothorax is completely resolved before they remove it, so I'm not sure how much longer it will be in, but we're encouraged that the drainage is at least slowing down.  I do want to ask you to pray that Bonnie would have minimal pain and discomfort from the chest tube being in.  It was apparent today that it was bothering her.  Anytime anyone touched her right side (where the tube is) or moved her right arm, she would grimace and sometimes cry.  We can't hear her cry because she's intubated, so it's even more heartbreaking to watch her sweet face wrinkle up in pain.  I so wish I could scoop her up and make her feel better.

Finally, our prayers for Bonnie to let us know if she wasn't ready to get off ECMO were answered rather dramatically a couple days ago (when she failed her trial off after 5 minutes).  We had a discussion with her neonatologist about what a blessing that was.  At that point, we didn't know she had pneumonia, though it was probably brewing.  If she had been taken off ECMO on the day we were originally aiming for, she likely would have had her hernia repair the next day.  Doing chest surgery on a baby with pneumonia would have been a disaster.  Even if they hadn't attempted her hernia repair, having pneumonia when you only have 2/3 of a lung would have been terrible if she had already been taken off ECMO.  Praise God for his perfect timing.

So there's our day today.  We pray that we have many more days like today, where we see steady and significant improvements.  Thank you all again for your faithful prayers and positive thoughts for Bonnie.  

Another day o' crazy.

There were a few interesting developments today.  First, Bonnie's chest tube continues to drain.  They think it's a chylothorax, which means the fluid is lymph fluid.  The doc is glad they decided to drain it, although putting in the chest tube, and now the chest tube itself, did cause a couple issues.  The whole deal probably set Bonnie back by a few days, but it's something that would have needed to be taken care of eventually anyway, and the sooner the better.  So there's that.

Around noon today they did another echo to check on her pulmonary hypertension.  This was the low point of the day, because the echo showed that it was pretty severe, and worse than it's been on previous echos.  They had started two medications after yesterday's echo to address the pulmonary hypertension.  One of them--nitric oxide--should have helped fairly quickly (it didn't), and the other--sildenafil--is more of a long term thing that may not help for awhile.  Pulmonary hypertension is really scary, because it can be really hard to treat, and it can be the thing that keeps babies from coming off ECMO.  The fact that it was worse today than yesterday wasn't a good sign.

Despite the above, there may be some good news.  When they put in Bonnie's chest tube yesterday, the doctor also decided to put in a new endotracheal tube. Using the new tube, today they cultured some fluid from her lungs to see if there could be any infection there.  (The previous tube, which had been in for over a week, would have grown bacteria no matter what, just because it had been in for so long.  With a new one, they can trust the results of a culture.) So far, it looks like it's growing some sort of gram negative bacteria.  I can't remember enough from my microbiology class to explain what that is, other than to say, you don't want gram negative bacteria to be growing in your lungs.  Bottom line is that it looks like she has pneumonia.  Which sounds like bad news, and it kind of is.  However.  Pneumonia should be treatable, and they're starting her on antibiotics today.  *Also*, a lung infection could explain why her pulmonary hypertension is so bad.  Our hope and prayer is that it's the pneumonia that's making her pulmonary hypertension look so bad, and that once her pneumonia clears up, the pulmonary hypertension will improve as well.  

If that whole explanation made your head spin, I'm with you.  Overall, though, we left the hospital this afternoon with some hope that things may start to improve in the next few days.  Right now my main prayer request would be for Bonnie's pulmonary hypertension to go away, or at least improve significantly.  Also please pray, of course, that her pneumonia will be easily treatable and won't cause further complications.  Thanks, y'all.

Plan B.

Not gonna lie--today was emotionally exhausting.  By mid-morning, the big plan (with the three tests) had totally gone off the rails.  Around 2:00 a.m., Bonnie started having issues *again* with low blood pressure.  They had to turn up her ECMO flow to help, so the low flow trial didn't happen.

We got to the hospital around 9:30 and spoke with the neonatologist about formulating a new plan.  She said that she felt like Bonnie's blood pressure issues were more related to something the medical team was doing versus something that's wrong with Bonnie...like maybe they were pulling off too much fluid, for example.  By that point in the day, her blood pressure seemed pretty stable, so she wanted to do an echo with the ECMO clamped off completely (this was #3 of the three tests, even though she hadn't passed the first two).  This was so they could get a good look at her heart function, as well as assess for pulmonary hypertension.  The verdict was that her heart is functioning well, but that she does have a good bit of pulmonary hypertension (the blood pressure in her lungs--if it's too high, it makes her heart work too hard to pump blood through the lungs. It ain't good.).  Also, literally five minutes into the trial off ECMO, they got a blood gas and her CO2 level was already up to 72.  They're trying to keep it between 45 and 55, which is where it was just before they turned off the ECMO...so it had gone up really quickly.  Fortunately, it was easy to resume her ECMO flow, and that corrected the CO2 issue.

It was discouraging that she flunked her trial off ECMO so quickly.  The neo said that usually, when babies fail a trial off ECMO, it's because they can't keep their oxygen level up.  Bonnie actually did really well with that side of things.  Her problem is that she wasn't able to get rid of CO2 fast enough.  I either didn't get or didn't understand the explanation for why this might be the case.  Either way, our girl wasn't ready to come off ECMO today.

The neonatologist did decide to start Bonnie on some nitric oxide (iNO), which is a gas that she's receiving through her ventilator.  Its job is to help open up the blood vessels in her lungs to help with the pulmonary hypertension.  She also started her on sildenafil, which is...Viagra!  Another medication that can help with pulmonary hypertension.

The other thing we learned from Bonnie's echo today was that she still has an "impressive" pleural effusion.  Can't remember if I mentioned this before, but she's had it at least since this past Friday.  The oversimplified explanation is that it's an accumulation of fluid around her lung.  Anyway, there's been this battle of sorts between the folks doing the echo's (which is a type of ultrasound) and the neonatologists reading the daily chest x-rays.  Apparently, the pleural effusion is really hard to see on x-ray, so the neos have been fairly unconcerned about it...plus it didn't seem to be causing any problems with her right lung.  However, on echo, it looked really big (still), so Bonnie's neonatologist ordered a chest ultrasound to specifically look at the pleural effusion.  Bottom line is that on this test, it looked "big enough to do something about it."

So, what do you do to fix a pleural effusion?  You drain the fluid!  And how do you drain the fluid?  You put in a chest tube!  I was really really hoping it wouldn't come to that, because everything I've ever heard about chest tubes indicates that they're really painful.  They ended up putting in some special variety that uses a smaller tube and doesn't require an incision to "install."  In theory it should be less painful than a traditional chest tube.  Anyway, as soon as it was placed, it drained over an ounce of fluid.  That might not sound like much, but when you only weigh 7 pounds and your lungs are already squished, an ounce of fluid mashing on them could be significant.  They're also running some tests on the fluid that drained to make sure there's no infection, among other things.

So that was our day.  I think we actually blew by plan "B" long ago and are now on something like plan "Q". I don't even really know what the plan *is* at this point, other than I think they're going to do another echo tomorrow to see if the nitric oxide and Viagra (hehe) have helped the pulmonary hypertension.

As far as prayer requests, I have a few:

• For wisdom for Bonnie's doctors, nurses, respiratory therapists, and anyone else involved in her care. She's making a lot of the docs scratch their heads trying to figure out what her body is up to and what they need to do to fix it.
• That the chest tube won't be painful for her and that having all that fluid drained will be helpful for her. 
• That the echo tomorrow will show some improvement in her pulmonary hypertension.
• That her blood pressure would stay where it needs to.  This low BP business is troubling. (To me--the docs seem more perplexed than worried.)
• That the next trial off ECMO won't happen until she's ready to pass it.  I would rather wait a week to try again (it won't actually be that long, God willing) and have her pass it, than try in two days and have her fail again.

I know I keep saying this, but I really mean it--thank you all *so* much for your prayers, positive thoughts, and words of encouragement.  Thank you for the love that you've shown our family. We are so blessed.

Three tests.

First of all, happy Father's Day to all the dads (and daddo's--which is what Henry calls Jonathan) out there!  Both Jonathan and I were blessed with amazing fathers growing up, so a big thank you to John Maddox and Jerry Helms. We love you!

Now to Bonnie.  She had what the nurse described as a "rough" night last night.  Her blood pressure and oxygen saturation (% of O2 in her blood) were too low, and they ended up cranking her up to full blast ECMO with 100% oxygen.  By the morning, she was back to more reasonable settings, and they speculated that her blood pressure was low because of all the morphine she's been getting, as it can cause a decrease in BP.  The decision was made to switch her from a morphine drip to fentanyl, which apparently doesn't have the same effect on blood pressure.  While I was visiting, Bonnie was resting comfortably and all her vital signs were great.  By the time I left, she was down to 48% flow on the ECMO and about 40% oxygen.  Way to go, Bonnie!


So, the deal with the three tests is this.  Currently, she's on the surgery schedule to be decannulated (taken off ECMO!) tomorrow at noon.  However, there are three tests she has to pass first.

1. She has to make it down to 40% flow on ECMO and behave. Good blood pressure, good blood gases, etc.
2. If she accomplishes #1, she will have a "low flow" ECMO trial from 4 a.m. to 8 a.m. tomorrow (Monday) morning.  They'll turn her ECMO support waaaaay down for four hours and see how she handles it.  Again, she needs to behave.  Good blood pressure, good blood gases, etc.
3. If she does well with her low flow trial, they're going to do another echocardiogram (ultrasound of her heart).  She's had several already, but this one is different because they're going to completely turn off the ECMO to do it.  (Don't worry, she'll still be on a ventilator, and the echo doesn't take long.)  The reason for this is that they're interested in the contractility of her heart, i.e. how well it can pump.  It hasn't had to work very hard for the past week and a half, because the ECMO machine has been doing a lot of the work for her.  They want to make sure her heart is ready to kick into gear when she comes off ECMO.  The reason to turn it off completely is so they can get the best possible look at what her heart is capable of when it's flying solo.

So. If she can do allllll that, our baby girl will be off ECMO by this time tomorrow.  I would love the ECMO phase of our journey to be over, but I do want to be sure she's completely ready.  As I mentioned in a previous post, once you're off ECMO, you're off for good.  The reason for this is that when they take you off, they ligate (tie off) the blood vessels that have been used.  That would be the jugular vein and the carotid artery.  If those sound familiar, it's because they're gigantic and extremely important blood vessels that run to and from your head (as in, your *brain*).  Once she's off ECMO, Bonnie will no longer have a functional right jugular vein or right carotid artery.  She won't have a pulse on the right side of her neck. (Which could be a neat party trick later on down the road.)  Anyway, all that to say, once ECMO is done, it's d-o-n-e.  We want to be completely sure that she can handle being supported by just a ventilator before taking her off.

So that's where we stand at the moment.  We are grateful to God for getting Bonnie this far with minimal drama. There is so much that could have gone wrong up to this point that *hasn't* gone wrong.  God is definitely hearing and answering our prayers.  Please continue to pray for our sweet girl that if she's really ready to be off ECMO, that she'll pass these three tests tonight/tomorrow morning.  If she's not ready, please pray that she'll let her doctors know that she needs a little bit more time on ECMO.

A really good day and a prayer request

Today was a good day for Bonnie.  We found out this morning that she's down to 45% support on ECMO, which for her is the lowest setting the machine can be on and still function.  She's tolerated this really well, and her oxygen saturations have been awesome all day.   Right now the plan is to leave her at 45% for the rest of the weekend, then do a "trial off" early early Monday morning.  If *that* goes well, the plan is to decannulate (i.e. take her off ECMO) sometime later in the day on Monday.

Here's where we need your prayers.  The ECMO machine is running so slowly that there is theoretically an increased risk of clots forming in the circuit.  Bonnie's been having to get lots of platelets today to replace the ones being "eaten" by the machine.  Her nurse today voiced some concern that leaving her at such a low flow rate for the next 36 hours or so could cause the oxygenator to clot, and it would have to be replaced.  Not a huge deal, because that wouldn't be as bad as replacing the entire circuit, but still not desirable.  It could set her back a few days in getting off ECMO.  Please pray that the circuit stays clear (or clear enough) so that we can keep to the current plan and time frame.

Update:  We just spoke with Bonnie's nurse tonight, and she said they've gone up on her ECMO flow to 65% due to some "blood pressure issues."  Not sure if it was low or high or why that would necessitate an adjustment to her ECMO flow, but the nurse said that she'll likely still be able to wean down to 45-50% by tomorrow night and then have her trial off early Monday.  (It's actually somewhat of a relief to me that her flow is a bit higher, because having a faster flow might help prevent more clots from forming in her circuit.)

Slow progress=progress

So, it turns out that giving an update on Bonnie now that she's here is way more difficult than when I was just musing and speculating prior to her birth.  It's hard to know what to say when people ask how she's doing, because all day long, I sit in the room with her and take notes on what her ECMO settings and ventilator settings are, results of her x-rays, ultrasounds, and echocardiograms, how much and what medications she's on, etc.  I have an overabundance of technical medical data that (I would imagine) would make most people's eyes glaze over.  Jonathan and I are so in the middle of it all that it's hard to summarize what's been going on.

However, if you want a very general summary, it would be this:  Bonnie is doing really well.  Even though she's on ECMO (which I come to appreciate more and more everyday), she hasn't had any significant complications.  Her settings are slowly being weaned, which is what needs to happen before she can come off ECMO and have her hernia repair surgery.

The weaning process is going a little slower than it could, due to some blood volume issues, *but* as of this afternoon she was at 66% support, down from about 90% just a few days ago.  Once she gets to 40-50%, the conversation will start turning to having a "trial off" to see how she does.  If she tolerates it well (and she might not the first time, which is okay), she's one step closer to getting off ECMO completely.  What a glorious day *that* will be!  (Also a scary day--once you're off ECMO, there's no turning back.)

We've been told by several people that Bonnie is a feisty little fighter.  (That was something I prayed for while I was pregnant with her...might regret that when she's a teenager. Ha!)  I'm so glad she has some fight in her to beat the CDH monster, but at the same time, she needs to be more chilled out at this stage so that ECMO can work more effectively.  Yesterday they ended up starting her on a versed drip, which is a sedative.  She's been on morphine from the beginning for pain, but even with that, she tends to get agitated easily, which causes her blood pressure to go up and her oxygen level to go down.  Neither of these are desirable, because we want her to relax and conserve her energy.  The versed did seem to help chill her out, so that was good.  I do kind of cringe every time they have to go up on or add another medication like that, though, because that's just one more thing she'll have to  come off of eventually.  I need to keep in mind that weaning off narcotics isn't life threatening, but not having enough sedation at this point *could* be.

As far as prayer requests, we would love for you to pray that the ECMO weaning process would continue smoothly with no complications.  Also please pray for Bonnie's right lung (the good one) to stay nice and open--we don't know yet how much lung there is on the left side, but one of the doctors said yesterday that she heard breath sounds on that side, which is a great sign.  Also--she has something called a pleural effusion, which is essentially fluid around the lung where it's not supposed to be.  Please pray that this resolves on its own and doesn't signify a major issue.  The doctors aren't worried about it *at all*, but it still freaks me out.

That's it for now, folks.  Thank you thank you thank you for your love and concern for Bonnie.  It seriously means the world to us that so many people are thinking of and praying for our baby.

A few pictures.

One of Bonnie's nurses made her this sweet sign the other day. 

Here she is with her eyes open.  This is from a couple days ago, and she's still really puffy from the ECMO.

This is from today--our sweet sleepy girl.  She's starting to de-puff, but she still has a lot of extra fluid--hence the oddly shaped head.  It'll go back to regular round baby head in a few days :)  To give you a tour of all the tubes and such, in the upper right corner next to her right ear are the cannulas (technically cannulae, I'm sure, but whatever) for the ECMO.  Going into her mouth, the top two tubes are suctioning air and gunk out of her stomach and bowel, and the bottom tube is her endotracheal tube, which is attached to the ventilator.  In her belly button is an arterial line which continuously measures her blood pressure--very handy.  The little sticker on her chest is measuring heart rate (I think--could also be respiratory rate).  There are also a few other gadgets connected to her that you can't see in the picture.

Aaaaand here we have Bonnie and Jonathan.  Sweet, eh?

Resting.

Bonnie, that is.  Or at least that's the goal of ECMO at the moment.  It's taken a few days (since Friday when she was placed on ECMO) to get her blood pressure and blood volume stable.  The machine is dependent on how much blood volume is circulating, and her blood pressure is also a reflection of her blood volume.  So. She's had to get extra fluids and blood products to keep her blood pressure up and keep the ECMO machine happy.  Today seems to be the first day that there hasn't had to be constant tinkering of volume and blood pressure (she's off her blood pressure medicine as of yesterday afternoon--yay!), so after some discussion amongst various of her doctors, they started "pulling off" some extra fluid via her dialysis-but-not-really-dialysis. (It's CVVH--continuous veno-venous hemofiltration, if you're keeping track.  I haven't figured out yet how that differs from "real" dialysis, but apparently it does.) They're doing that *very* slowly right now, but eventually it should help her to de-puff.

I asked one of Bonnie's nurses today if she was actually making any progress.  Short answer is no.  Right now the goal is for her heart and lungs to rest so that when she comes off ECMO (which isn't likely for another couple weeks at least) they can start to function like they're supposed to.  So, the good news is that she hasn't had any complications so far from being on ECMO.  The bad news is that we still really don't know how she's going to do.  I realize it's only been a few days, but already I'm getting impatient for this train to start moving.  I'm ready for them to starting weaning her ECMO settings.  (Or more accurately, I'm ready for Bonnie to be ready to have her settings weaned.)  Please pray for patience for me and that I can just appreciate these days with my daughter calmly and comfortably resting (usually--she does show her feisty side every now and then).  Also please continue to pray that Bonnie won't have any complications from the ECMO.  Pray for wisdom and discernment for her medical team and her *wonderful* nurses, that they would make sound and well thought out decisions on what to do and when.

And one more prayer request.  A dear friend of the family lost his precious son Avery very suddenly about a week ago.  He was only 16 months old, and his little brother is due to be born in July.  Please pray for comfort for his sweet parents.

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.