Day Nine: Morning

While I slept soundly, Baby Girl’s temperature and heart rate climbed through the night.  By the time I got back in here this morning, her heart rate was 288.  She was in v-tach.

Watching your baby have a heart attack is a pretty terrifying thing.  I never felt so helpless.  To see her color change, her body so swollen, and vitals that even doctors are freaking out about is pretty scary.

  
It has been a scary morning. They drew blood, checked for infection, looked at hemoglobin, changed her pain medication again, and waited.

We finally broke through the Fever, so that’s good news!

Also, as I prayed for her and how to help, it came to me to play Nathan’s violin music for her.

As soon as I did that, her heart rate dropped 3 points, and then another 3, and then another 3, until by 11 this morning she was back down to 160!  That’s still high, and right at the v-tach border, but way better than 288!

They also got her some prune juice to make going to the bathroom easier and less stressful for her heart, in addition to the catheter they alreadyf put in, because it literally can’t handle any stress right now.

  
She also got her screws turned again, because she needs the airway.

Even though the pain of it adds stress to her heart, it is what opens the airway.

And her heart is ultimately under stress from her body working so hard to breathe.

  
They are all so gentle with her, and working so hard with her, and trying so carefully to help her.

Today we even had music therapy and the child play people come in to help soothe her and comfort her.

I am so grateful.

Truly.

Our prayer needs right now: heart rate to come down and pain control.

But the distractors? They are working already! I can tell, anyway, even if no one else can. 

Look! This baby has a chin pointing through today, a chin distinct from her lip! And a jawline! It’s amazing!

  
Compare to before distraction started:

  

Day Nine: Midnight Miracles

Baby Girl is still fighting!

She is not awake, and is not breathing on her own, but she is stil fighting.

New miracles:

She is consistently opening her eyes when she hears my voice or Nathan’s. Her eyes don’t stay open. But they do open and then close back right away. It’s a good sign. She is in there!

She is not only tolerating feeds, but tolerating them almost at the levels she was eating before!  Her goal was 75 every three hours, and before surgery we got her up to 90 (three ounces) – which was above her goal. Now she is tolerating 25 every hour in her tube. This is great progress!

With only two days of turning the distractors, her airway has already opened enough they were able to adjust her ventilator (that is breathing for her) and finally suction her for the first time (yellow secretions).  That’s incredible!  And it means it’s working!

  

It may be a protective factor for one smart, tiny little girl to keep herself far away from all this pain. Medical trauma is a real thing, and this is seriously tough what she is enduring! Much like keeping her sedated, it may be her way of coping. We just need her not to go too far away, and to still have the capacity to wake up when she is ready.

They want that to be yesterday, or now, today.

But I think she is a clever girl, and just beneath the surface, and very present and aware of us.

I play Nathan’s new (and apparently imaginary) album for her, pray with her, and sing to her.  I stroke her hair and kiss her cheek and whisper how much we love her. We call Nathan to say good morning, to say hello, to say good night.

We are connected, this Baby Girl and me, our spirits bonded long ago.

She’s in there. I know she is.

Wake up, baby! Breathe!

Day Eight: Afternoon and Evening

Today has been intense, in a nothing-happening kind of way.

We are waiting for her to wake up.

She is not waking up.
She is not breathing on her own.

Her brain looks good, though, and sometimes her eyes flutter when she hears my voice.
Working as a chaplain, though, I know that is sometimes involuntary.

I tried to stay calm and pace myself today, being grateful for rest and quiet time that helped me get caught up on some home-type things.

I mailed some letters:
  
I stepped outside and went for a walk for the first time in a week, to smell the air and let rain fall on my skin:
  
 
And we gave that baby a bath, which made her distractors look way less scary:
  
  
Sometimes I sat with her, and talked to her, and prayed with her, and sang to her.
    

  
Mostly I waited.

There was a lot of waiting.

It’s hard to even leave her room, because what if that’s when she wakes up?

I got more training on how to turn her distractors:
   
   
And I stepped out to work on Hebrew while she was getting a PICC line, just in case she needs resuscitation, they said, and to get some IV’s out of her foot. They can’t loose her airway and her IV’s, they said. It will make things safer and easier and faster, they said.

  
In the meantime, I took care of some business. I got some homework done, I finished all the notes I had to do, and wrote a few essays. Mostly, though, I can’t focus very well, though it is better since I have slept.

We are still waiting on her to wake up, but we have some plans settling into place just in case:

If she doesn’t get better, we will be here for the whole distraction – all six weeks of it.

If she does get better, and better enough to go outpatient, we have two options:

If we can get Medicaid to pay for even one or all of the flights, we could go home for four or five weeks, have weekly xrays sent up, and then fly back to have the distractors removed.

But that’s three flights: home, back here, and back home again, to come up with, not to mention other variables like feeding tubes and oxygen and whether or not home health in our county can get it together. Right now Cincinnati isn’t comfortable with home health’s response before we got here (that’s why we were life-flighted), and so I’m not sure they will go for it because her airway is so high risk. If Medicaid will pay even for two of them, we have the funds we could use for one flight if that’s what it was best used for in her care.

If Medicaid won’t pay for it, or if she is cleared for outpatient but not to travel, we will go to the Ronald McDonald house and she will come here for feeding follow-up and x-rays each week. There is a 21 day waiting list right now, and we are on it just in case, but now have enough funds in the fundraising account that we could use that if we really had to until it was our turn to move in there.

In the meantime, I am not working and have zero PTO. Why, you ask? Because I went to France for 10 days six years ago, and then to Israel for 10 days after my father died, and then back to Israel for 10 days after my mother died. Oh, yeah, and both my parents died. Oh, yeah, and surgery after surgery after surgery. And cochlear implants. Both of them. And cancer. And court for the kids and their adoptions. And and and. So I have never caught up to build up my PTO because things kept happening. So I don’t know how that will unfold, or when my paycheck is finished and the last one comes until I go back to work (plus being docked to pay for my health insurance, which I won’t lose but have to pay for). That said, one of the best things about my job is the benefits they provide for us, and that is what has been such a huge help in the past. I do have AFLAC, which will help cover some if I have to be gone too long, and did follow promptings to sign up the kids also when that was offered. I don’t know yet what that covers, if anything, but I sent an email two days ago to ask, so we will see. It’s at least something.
Caseworkers are also fighting for us and advocating for us. They got the baby bumped up to Level IV care, which is the highest, which gives her more provision to work with and pay for some of the things Medicaid won’t cover. They are fighting with Medicaid to at least pay for a flight home. They did work out the payment issue so the life flight and hospital stay has already been paid and is covered. They are working with the pediatrician to get the home health drama figured out. They are being very good and very kind and very helpful to me, and I am grateful that in these crises we have had really good caseworkers.

Also, we sent Two back. Did I tell you that yet? Two was ready to go back with mom, and it was almost time anyway. So when the baby and I flew up here, we sent Two to a different home for respite (a family she knows), and then they sent her on to rehab with her mom. That leaves Nathan at home with just “our” kids – which is fun to say, finally. Alex and Anber, who are already adopted, the boys (Kirk and Barrett) who were supposed to be switched from foster to adoptive placement this week but the adoption worker can’t do it until we get home because all four of us have to be there, and Six, who turns SEVEN today, and who allegedly is getting terminated this month and then will be an adoptive placement. That’s our crew, and just like that we graduate from being foster parents.
It’s like being released from a mission after two yeas: we are both sad and relieved.

And what I mean by that is that I am sad and Nathan is relieved!

I am kidding (or not), but Nathan is doing an amazing job with the kids while I am away. I am so grateful for his hard work and service to our family. I talk to the kids on FaceTime several times a day, and we are all staying connected best we can. They are amazing and enjoy summer, so sometimes aren’t bothered so much that I am not around. It will be an adjustment when I come home again, for our family to re-balance and re-settle one last time.

For now, we just need this baby to wake up.

Any minute now, right?

She is starting to swell, and the nurses are getting nervous, and the RT lady pretty much just stays in the room now.

I know about life support, and from being a chaplain I also know about delaying death with machines.

But this is not that, I know, because there is life we are supporting.

I focus on that: her color is good, her heart is doing better (though still with frequent episodes of v-tach), her brain looks good, and oxygen is finally in her body – even if it is coming from machines – and carbon monoxide is getting out of her body.

That’s something, right?

Even if we need her to start breathing on her own, and need her desperately to wake up?

I also obsess about watching her face move as we do the turning of the distractions.

Can you tell a difference yet?

Here is before the first distractor turns:

 
And here is after the third one, which makes a total of 6, which means six mm moved already, just today! 

Can you tell? She has a tiny bump of a chin! Can you see it?!

  
Breathe, baby, breathe! And wake up!
 

First Turns

We finally had rounds!

The ultimate goal of this surgery was to open her airway by moving her jaw forward.

This is her profile this morning, on day one of turning:

  
The doctors did her first turns: 


  
In other news, her heart rate changed and her eyes fluttered when I talked to her this morning, so they tried it with Nathan via FaceTime as well, and it worked! 

She is recognizing us, and in there somewhere!

It’s a good sign, they said!

Wake up, baby!
 

Day Eight: Morning

I slept for nine hours, you guys!

I slept for nine hours in a bed! Stretched all the way out! The way I can sleep at home!

(except at home I don’t sleep for nine hours!)

Last night they gave me a parent room, which is to be coveted, it turns out, just for the night.  I had to turn in the key this morning, and ask for it again, and we will see if I get another chance while here. Everyone takes turns, I think, so I don’t know when I will get it again. I feel so much better, though, with some sleep.  It was just a simple tiny room with a twin bed and just enough space to get the door open. But I could turn the lights all the way out, wear pajamas for the first time in a week, and take my ears off and rest my head for an entire night.  It was glorious! No Christmas light monitors, no beeps and alarms, no people coming and going all night a hundred times an hour.

I laid down and then sat up, thinking it was only a second, and it was nine hours!

I couldn’t believe it! I am so grateful. I definitely got on my knees to thank Heavenly Father for a simple bed and good night’s sleep.

  
Now I am back in her room, where there is also a bed so I can stay here just fine even if I don’t get a parent room.

  
Because she is completely asleep, and nothing I can do for her except leave her alone so she can keep sleeping, and because I got so much sleep myself, today will be a good day to do some work.

I have notes to do, papers to write, consults to type up, and my Hebrew translations I am working on this week.

All of that will help my head clear a little, and bring back some normal.

The most important and urgent thing, though? Postcards for my kids!

  
I miss them so much!

Baby Girl did great overnight.

One of her new medicines makes it hard for her to pee, so they are trying to put a catheter in, ecept every time they try, she pees all over them! Ha!

She has some bleeding and drainage, which they said to expect:

  
But her distractors are in perfectly, healing perfectly, and helping perfectly.

We will start turning them today!

Gulp!

The new pain regimine is helping her. They just had to find medicine that her mother hadn’t already abused while she was in utero. Once they figured that out, she is back to normal doses on a good combination of medicine that is working for her. I am so relieved!

  
Her goal for today is to get cleaned up from surgery. They want to clean the blood off, do what they do for drains and the open wound sites, and change her sheets into regular bedding from the OR bedding.

They also hope this wakes her up on her own.  She is holding steady enough they are ready for her to show signs of breathing on her own and waking up. She doesn’t need the medical coma or sedation now, so if she wakes up they won’t out her back under – other than keeping her comfortable with pain medication.

So we will see if I get to see those bright eyes today!

Those are our prayer requests today: pain control for the little baby girl who needs to wake up today!

The Jaw Distractors

Again, these are to pull her jaw forward so her new tongue can be pulled forward, so that all that can por up her airway and let her breathe and eat. 

There are two bars that go all the way across her face through the bone. They cut her jaw on both sides. I turn these two times three times a day, and it pushes the jaw forward. New bone grows in the break, giving her more space in her mouth and throat for air and food and tongue.

   
    
    
 

Day Seven: Surgery Night

She is alive. But she is alive. That’s good, right? She is alive!

The doctor cleared his throat, and was staring at me.

“Do you understand what I am telling you? Do you have any questions?”

I am a chaplain, I say.  I understand.

I wonder if this is why I have been a chaplain, so I would understand.

Because I need to understand, since there is no private space in this whole hospital for me to cry.

In that moment, I was sitting across from the doctor in the tiny consult room, in which I met with the doctor after having gathered my things for the move to PICU and then waited for three more hours to find out why.

Those were a long three hours.

And now the news I had been waiting for, but did not want.

Baby Girl struggled.

She is alive, and fighting hard, but it is such a struggle. 

Our sweet little baby with her giant bright eyes full of life and hope, with her fierce determination showing off in how fast she can kick the pulse of off her foot… is on life support.

  

The surgery was nearly too much for her, her struggling heart, and her limited airway.

There was a problem trying to intubate her.

There was a problem with her heart during surgery.

Fluids. Lungs. Congestive heart failure. This. That. Also this. Also that.

There was this, there was that, and this happened and that happened.

And now she is in a coma, and on life support.

  

And, they said, if she tries to wake up before morning, they are going to put her back under into a coma intentionally.

From a medical trauma coma on accident to a medically induced coma on purpose.

Because she is so sick and really does that badly need to stabilize her airway and her heart before other scary things happen, like strokes or medical cerebral palsy or death.

So here is the good news: she is alive.

And that counts for a lot.

It is everything.

The scary news: she is in a coma, on life support, and back on the feeding tube.

She is not trached because she is still intubated.

  

The surgery itself was a brilliant success, though, if she can pull through this.

Here’s the kicker, though, as if that weren’t bad enough.

She can feel it.

Because her bio mom used so many drugs while she was pregnant, they can’t find medicine to knock out the pain.  They discovered her tolerance to the medicine is so high (because of so much exposure to the drugs) that the infant doses aren’t even touching it for her. So she is completely out, but had giant tears pouring out of her eyes with some other responses she shouldn’t have in her state and on the medicine she is on.

They cannot give her any more morphine or it will stop her heart.

So that’s our newest prayer request: pain control.

They finally found a combo of two, with high enough doses as a drip but not too much to be harmful, that worked well enough to stop the tears, but they can tell she is still feeling it.

That may be adding to the coma issue, and is certainly adding to how hard her heart is working.

More updates when we have them.

Many thanks for your prayers.

 

Surgery!

Miracles from your faith, and answers to our prayers!  

 
 

She has just gone into surgery!

They expect it to take four hours.

  

I kissed her goodbye, and I cried.  

We called Nathan and the kids on FaceTime to let them see her, and to let her see them, and then they said goodbye.

Surgery is expected to take three hours. 

Best case scenario, they said, she will get the distraction only and go back to her regular room. 

Worst case scenario, they said, it takes longer, she also gets a trach and a feeding tube and heart problems (from working so hard to breathe) and be sent back to PICU. 

That’s why, as I was typing this an hour into surgery, I burst into tears when they called me up to the desk and told me to go back to our room and pack all of our things up for PICU.

  

I don’t know why they said that or what it means, I just know the PICU is a higher level of care and on their “worst case scenario” list.

I don’t know if I have ever prayed for anyone the way I have prayed for this child.

Maybe there is a lesson there.

Day Seven: Afternoon

We now have surgery consent, but not anesthesia.  Classic.  Waiting for that, and hopefully she can go to surgery soon.  The doctor just came to reassure me it is happening today, “no matter how long we have to wait.”

In the meantime, they gave me a video and slide presentation training on the kind of distractors she will have.

And they brought a doll, on which I had to practice and pass a test.

  

I have to do two turns three times a day, on each side.  Making sure I do both sides turns out to actually be really important.  If I don’t, she will grow crooked!

That feels like the least of our problems right now.

Anyway, here is the key that I stick on the end of the bars at the bottom, and turn like a socket wrench (I actually don’t know if socket wrench is even a real thing, is it?):

  

In other news, the social worker is fighting a grand battle with Medicaid.  Her hospital stay is now finally covered again and for sure, as was the life flight up.  She is fighting for them to fly us home, but we aren’t sure they will yet – or that they will cover flights back for follow-up.  That’s part of the reason we asked for help on this fundraising page, because there are extra things like that which she needs that they won’t pay because it is out of state.

The social worker also got me on the list for Ronald McDonald house, just in case they have an opening.

She thinks, now, the hospital will just keep us here the whole six weeks because Oklahoma doesn’t have the resources she needs for follow-up and already botched up so many things.  They also know we can’t afford to fly back every week. 

So it looks tentatively like we are here for six more weeks – but we only have a place to stay until she is ready for discharge. The hospital won’t pay for a flight of medicaid can’t. They will comp me one night at a hotel if we need time to book a plane ticket, that’s all.

But if we have to stay here for six weeks, but not be in the hospital, but not have a spot at Ronald McDonald yet, then we are on our own.

So it makes me anxious, because there are so many unknowns while we are still trying to raise funds.

Even Nathan’s album coming out this week got held up – the production site released it, but they get t exclusively for a few days before it pops up on iTunes. We weren’t prepared for that, though it isn’t a big deal other than being excited and knowing it’s our other fundraising idea. We are trying.

They also came to take her “before” pictures, to compare with her after distractors pictures.  They said it will be amazing.

  
  
She’s pretty cute already, I think, but maybe I am biased.

I just need her to breathe.

And she just wants to eat.

So a recap for prayer requests:

We need anesthesia consent signed by mom or judge.

We need operating room availability.

We need surgery to be successful, so no feeding tube and no trach.

We need her to do so well she comes back to her regular room.

We need her to breathe, and we need her little heart to stop working so hard so we can pull her out of congestive heart failure, which is where we are as of lunch time.

And we are running out of time.

And my job, they said, is to keep her calm.

Keep her calm, this baby who isn’t allowed to eat, this baby crying in my arms for help when I can do nothing, this baby innocent of causing any of this.

So I pray, on my knees, with her in my arms, and cradling her little head.

And it comes to me to play Nathan’s album for her, the songs he was practicing the whole time she was at home.

And so I do.

And that’s when, finally, she slept.

  
So now we wait, but we are running out of time.

Pray, please.

Buy the album or donate to the fund or take our kids on a play date so Nathan can breathe or bring them food.

These are the things you have done for them, for him, for me, for her.

Thank you. Really.

Day Seven: Morning

Oh my goodness, you guys, this baby is so hungry.

We are still waiting on surgery, and don’t even have a time scheduled yet.

Why?

I thought you might ask.

Because bio mom is refusing to sign consents at jail.

So now the caseworker is having to go to court to file a medical neglect charge, after which she can try and get a judge’s order.

In the meantime, it has now been fifteen hours since the baby has eaten.

And they can’t give her anything, because we could get the green light any second.

Or it could be eight more hours.

So while we wait, I am pacing the room with a baby that feels heavier by the second, while she screams to the tune of alarms going off because her heart is working too hard and her oxygen is too low.

It’s like that time Nathan made me watch that TV show about the isolation room.

And I am about to quit, after fighting all night and all morning with the screaming baby I cannot make feel better.

So I hit the quit button.

1. I called for child life, a service that runs the play room but also has rockers, so someone else can hold the screaming baby that I really do love a lot.

2.  I called the chaplain, who came and prayed for her to calm (and she did) and for consents to get signed and an operating room open up (it will).

3. I ordered my lunch, because the both of us can’t be hangry.

Then I took her back, rocked her to sleep, and got her laid down again:

 
Well, just in time for doctors to come in and wake her up.
Ugh.

We can’t win, and she is hungry.

Please pray.

The only other update I have is that they got us on the waiting list for Ronald McDonald house, just in case.