My Room

   
   
And it was my act of faith to set up for the baby, believing she will be okay and get to transition to intensive outpatient:

   
   
And Ronald McDonald House gave me this welcome bag:

   
    
   

Ronald McDonald House, You Guys

And all my meals are free!

And they save me food if I miss it because of being at the hospital!

And I have a snack cupboard and a fridge shelf and a freezer shelf if I want my own food!

So I will be spoiled for a weekend, or taken care of for long-term if we need it.

And you can send me mail here!

And I can sleep!

And exercise!

And and and LOOK!

   
    
    
    
   

  

Day Ten: Later Afternoon

I got us all moved in to Ronald McDonald House! 

Well, me.

She can’t come yet, but if she gets well enough she can come with me and do the last bits on intensive outpatient.

But I can still stay here, and be with her, all I want, anytime I want, as long as I check in to the House once every 24 hours.

They have laundry, a gym, a pool, and a kitchen for meals.

It is a huge relief, and an answer to prayers!

And I knew I was in the right place when I saw this:

  

In the mean time, Baby Girl is completely out of it again, but her heart rate has only gone down a tiny bit and her carbon dioxide (sorry autocorrect keeps changing that to monoxide – I am trying to catch it when it does!) is still too high.  We need that airway to open! She is trying so hard! Look how much she has been moved already:

  
Go, baby, go!

Breathe, baby, breathe!

Day Ten: Afternoon

Once Baby Girl was sedated again, I knew I needed to do some self-care before the next time for rounds.  I had a plan to go downstairs for lunch, and then walk around the hospital a little to stretch my legs.

I miss her, you know, so much right now. I haven’t held her for five days, only got to see her eyes a handful of times, and it’s scary to hold her tiny hand when it doesn’t respond. I don’t even get to hange her diapers right now!

I miss her, and I miss my family.

The baby drama has been exhausting, and I needed to clear my head.

Except when I got downstairs to go to the cafeteria, I was so excited to see sunshine that I just kept walking!

And then when I walked out of the hospital entrance, I saw this:

   
Do you see?!

It’s a sign for the Ronald McDonald house!


I found it right on the corner, so now if they call our name I know it is easy to get there and easy to get back for appointments and easy to find my way by myself.  I was so excited to find it, and no longer felt anxious about that piece.  I said a prayer right there, asking for a room so we could take better care of me and of the baby.

It’s a sweet neighborhood, with fancy nancy homes that must have been gorgeous back in the day.

Nathan would turn them into theaters:

   

But that sign also said something else was close!  The zoo! So I checked my walking app, which I was using just in case I got lost:

 
  
And the Cincinnati Zoo really is just across the street and down a block!


So I walked there, went in, and had an amazing three mile stroll.

I even called the kids back home, who were eating their lunch, just to show them an elephant bottom!
   
It really was lovely, and exactly what I needed.


I even found some Hebrew!  

 
And this guy, who watched me eat some ribs and vegetables:
 

And I got to see this!
 
And be inspired by this:  

And I took a picture of this for my boys back home:  
The zoo really was amazing, one of the best I have ever seen.  There were dozens of smaller trails off to the side, physical gym activities worked in for kids, and almost all the walkways were covered.  They did have those giant mister fans up, with lines of people waiting to walk through, and I just laughed!  
Oh, Cincinnati. You think this is hot.  That’s pretty cute.

It felt like Oklahoma Sprigtime to me!

It was an amazing break for me, one that nourishment and felt good to my body and to my soul.

Then, suddenly as I was rounding back by the elephants again, two hours later, I heard that whisper:

Hurry! Leave now!

It would have scared me like a prompting about the baby, except I felt complete peace and a little excitement, like relief washing over me.

Then, just as I walked into our hospital room, the phone rang:

Ronald McDonald house called with a room for me!

 

Day Ten: Morning

Baby Girl’s heart rate went back up, so they are still wrestling with that.

They also had to increase the vent because she wasn’t breathing enough, and her carbon dioxide is way too high.

 
She opens her eyes now when they work on her, and squeezes my fingers until they leave her alone.

  
They are going to up her sedation a little, to try and get her heart rate down, but not so much she goes into coma.

They took her catheter out, and so far she is doing okay with that.

Her swelling is a little better, and they are moving her Tylenol to PRN instead of scheduled.

And, of course, and not her favorite thing, she got her distractors turned again:

  
She is out again now, because of the extra sedation, so I am going downstairs for fresh salad and maybe even outside for a walk!

Day Nine: Evening

Today I worked hard!

I finished the Hebrew chapter I had been working on, and I finished the last of my homework and papers for this semester! I only have finals at the end of the month!

This makes it easier to only focus on Baby Girl right now, and will make real life easier when we go home.

But mostly, Baby Girl is the star today!

Not only did she pull out of her coma state and wake up this evening, but after she was back asleep (at only a sedated level) and settled awhile, then I tried playing Nathan’s violin music again for awhile.

Over three hours, that brought her heart rate back down to the 140’s! Sometimes 130’s!  She is getting there!

She also pooped, and I have never been so glad in all my life for poop.

They did some kind of test or scan to look at her heart, but I missed what it was because I was doing laundry. But it came back okay with no damage, so I think all of us are starting to relax as she begins to improve.

I am so glad!

And look at her face late tonight, when she woke up again! Her eyes are almost back!

  

She looked at me, let them work on her, and then went back to sleep without being distressed.

I am so relieved of that.

I know a day is coming soon when she wont be sedated anymore, and they say she will be really mad when she realizes all that is stuck in her head.

I would be mad, too!

But they tell me to rest while I can because it will be really hard work with lots of screaming baby hours when she does feel better.

Poor baby!

But look how normal she is doing now, despite the higher heart rate that isn’t crisis high like it was:

  

Whew!

I got a sleep room tonight again, but they gave it away before I could get there with the key. So lame! Except I really don’t mind because now that she is waking up, I want her to know I am there. I also want to keep a watch on that heart rate.

That said, it’s some hospital drama for parents.  The team specialists (in our case ENT or plastics) come by anytime between 6am and 730am for their patient checks.  Then the whole collaborating team of specialists and nurses and nurse practioners and doctors and residents and fellows and pharmacists and nutritionists and social workers and speech path and and and – they do rounds from 8-930ish, sometimes later.  So the only time parents can safely leave the room is after 10am.

That’s not so bad. It means you have to get up at 5am, though, if you want to be dressed and decently modest before they come. This is especially true in PICU, where – for some reason – rounds are done in the hall instead of the patient room. That means I have to be dressed for the day by 6am so I can stand in the hallway to talk about how my baby was born in jail. Sigh.

What’s harder, though, is that that PICU also has evening rounds, which are anywhere from 3 to 6.  So we can only leave our rooms from 10 to 230, to be safe, and then we are stuck.  You can’t order food before rounds happen, because you can’t eat in the room. But once you do order, it takes 45 minutes for to be delivered. That means you have to leave around 645 if you time it well, but then night rounds happen between 730 to 9.  

So when I am supposed to be where to get a room key, I don’t know.

Last night thre nurse just told them yes when they called.

This time the new (holiday?) nurse just told them I had gone to pick up food, and they thought I left to go out to eat.

What’s funny?

The desk where the keys are issued is on the other side of the window from where I was eating in the parent lounge.

Crazy sauce.

Mostly it’s fun to be all worked up about something ridiculous instead of all anxious babies who need to wake up before they forget to at all.

Really it’s fun just to people watch in hospital culture, when I don’t have to be in charge of anything or do notes on everyone I speak to at all.

But really, it’s fine. I got two amazing nights of fantastic sleep on the exact nights I needed it. That is sufficient for my needs.

Tonight I will be there for the Baby, now that she is starting to wake up more, and that way we can be good and tired together when she realizes she is mad about that contraption in her face.  She keeps waking up more and more, but she is not mad yet.

More blessings: someone today brought me cereal and almond milk and vitamins and a suitcase to send home extra things they have given us for the baby.  I might fill it with things to be mailed home, and find someone to box it up for me and mail it, then bring the suitcase back to me to be returned. We are figuring it out, one piece at a time.

Prayer needs now: pain control, lower heart rate, continuing to wake up more and more, and breathing on her own more consistently with more volume.

Regardless, we are all going to be okay.

  
(Jeremiah 29:11)

She’s Awake!!!

  
About 610pm, Baby Girl started kicking her feet and fluttering her eyes.

I never moved so fast in all my life!

When I got to the side of her bed, she was just there, looking around.

When she saw me, her hand reached out to me and I held her tiny fingers.

  
I called Nathan right away!

He got to see her and say hi.

I sang to her I am a child of God, while crying and kissing her all over.

She was awake for about four minutes before going back to sleep, but she is just normal-and-a-little-sedated sleeping!

Oh, I can’t stop crying!

I am so grateful, and do thank you for your prayers, and Heavenly Father for answering them!

Now, if we can just get her feeling better!