Little basically just slept for three days straight. I mean … wouldn’t you? Cardiac arrest? CDiff? Diarrhea and vomiting? Sounds like sleep is a good idea, right?

I will admit – sleep may be the most peaceful thing a person can do but it was so very hard to watch. The term “looked like death” took on a whole new meaning for me and every beep of her monitor sent a jolt through me. I have a crick in my neck from snapping my head to check her heart rate! But she stayed stable all weekend. Her rest allowed me to process and develop a more healthy understanding of just how sick Little is.

When Little wasn’t sleeping she was retching. Her body ran out of things to actually throw up pretty early on and she had a stretch or two when she would retch for an hour+. I only mention this because it led to my loosing my temper for the second time in this journey. “Cost/Benefit Ratio” is a phrase used quite a bit around here and so when they refused to give Little any medication for her nausea because of its potential affect on her heart I understood. When she retched for an hour and a half and couldn’t go to sleep I informed the nurse that the cost/benefit ratio had shifted and they needed to get Little medicine now. To her credit … she did.

They have now taken Little off the two medications that were given to help her heart stabilize.  Her heart has remained steady and the sleepiness and retching has gone away with the meds! Praise the Lord!

The Lord has been gracious throughout this journey and I can only recall a couple of times where the stress has seemed to mount and overwhelm. Understandably, this weekend was one of those times. I could feel the tension in my chest but really knew something had to give when we had a particularly trying nurse on Monday.

It was between 7:30 and 8 AM and Little was still asleep; I was still lounging on my bed/couch. The nurse came in and told me I needed to have the goal of having the shades up by 9:30 AM and that I would need to comb Little’s hair and brush her teeth that day. Instead of it rolling off my back, I was feeling patronized and having to take captive some pretty harsh thoughts. It was evident that stress was reaching a critical level and so I called in back-up (Jeremy) and we swapped places.

It was great to spend a night in my own bed, hug our other two children, and shower without flip-flops! KB slept with me and thought it was hilarious that I sat up ready to help Little with a barf bag in the middle of the night . Tuesday was full with laundry, getting an oil change for the van, taking KB to the doctor, and getting a filling for myself before heading back to Denver for a date night with Jeremy!! Sounds like it wasn’t restful but it was just enough to get me ready to head “back in”.

And how did I get to have a date night with my husband while our family is living in two cities??? Two of my dear friends flew in this week to help with the house and kids.  Monica came in yesterday and stayed with the kids last night. Debbie flew in this morning and Jeremy picked her up at the airport on his way back to Fort Collins. The kids are thrilled to have them here and may be struggling to remember that these are MY friends not theirs!!!

**I wrote this whole post and left off the biggest news. Little was moved to 1A on the transplant list. She isn’t on machines but the dangerous developments of the weekend allowed for her to be made top priority as an “exception”. Praise the Lord for this and how it may speed up the process of being chosen for transplant.  His will be done.

Here we sit at the end of three weeks on the heart transplant list and things have change dramatically from week two. It seems that I had barely posted the last weekly update when I went to weigh Little and found she had gained a pound from the day before.  I am supposed to report such things and so I called the hospital and let the transplant team know.

The next day Little had gained another two pounds and her face had started to look puffy, so I called to let the doctors know. This trend continued and we ended up going a day early  for our weekly check-up at the clinic. Her heart’s inability to pump at full strength was allowing fluid to gather in her body and enough had gathered that the oral medication was no longer absorbing and doing its job. So we were kept for “24-hour observation” and put on IV diuretics. By Wednesday morning Little started feeling better and we enjoyed the time hanging out together (see recent post regarding the dog.) As good as she seemed to feel, Little’s lab results that day came back showing that her kidney function was not getting better and another day of IV diuretics were ordered.

Friday looked very different. It became obvious first thing that Little didn’t feel well. Her coloring was off, she had no interest in eating, no energy, and she was complaining of her stomach hurting. I went down to do a bit of laundry and got a call to come back upstairs; Little had what they thought was a seizure. This experience was enough to get everyone on board that something was truly wrong and they started running tests. First news? C Diff – this increased growth of bad bacteria is caused by antibiotics killing off all the good bacteria in one’s system. Little had antibiotics last month when her second pacemaker was put in and so, two weeks later, we find ourselves dealing with C Diff. This explained her tummy issues and fever.

As the nurse was walking out of our room after explaining those results, I began talking to Little about what I was going to order for dinner. All of a sudden an alarm began to sound and I looked up to see the nurse rushing back in and beginning compressions on Little while yelling orders into the hall.  I checked the monitor and it read a heart rate of 258. I sat down on the couch and began to pray.

As the room filled with more people and the CPR continued, I got up, walked out into the hall, and found a place where I could stand out of the way but still able to see the monitor. Zoey, a familiar nurse came and stood with me. She placed a hand on my arm and told me that she was going to stand with me and I thanked her without taking my eyes off that monitor.

Let me tell you something before I share what happened next:  I remember when I was getting married and was given the advice to take a minute during the ceremony and look each of my bridesmaids in their eyes. I remember thinking that this was a moment in my life that would define so many more and I should make sure to truly SEE it so that I would be more likely to remember details.

For some reason THIS is what crossed my mind as I was standing in the hall watching the 30 medical professionals surrounding my daughter’s bed. For some reason I realized  that this might be a moment in my life that would define so many more and I should make sure to slow down, look, and truly SEE it so that I would be more likely to remember details. As I looked I was touched to see the faces of so many who have cared for us over the past four months; Zoey, Chantal, Liz, Katie, Jess, Claire, Jesse, Elissa, and Bree are the ones I can recall at the moment.  These were people who weren’t just in that room doing their jobs but they were fighting for Little’s life… they CARE for my baby girl. It was such a comforting realization; beauty in the midst of horror.

And then I looked back to the monitor and saw the number I recognized: 90. You could feel the tension break and I remember hearing Zoey sigh, “okay”, then there was laughter.  That’s right! From those surrounding her bed there was laughter. Elissa, the superhero who saved the day, made eye contact with me and said, “She says my hands are too cold” … at that I felt my own hands stop shaking.

Turns out the defibrillator in her pacemaker had to shock her four times before her heart began to beat again. Turns out that when her pacemaker’s data was checked they found out this was the second time that day her heart had been shocked! The other time was mistaken for a seizure.

God, in His goodness, had already worked so that Jeremy and the kids were on their way to the hospital; they arrived about 20 minutes after this all took place. We hugged, we cried, we talked, and Jeremy went to Little’s side. After a couple of hours they returned home and after a couple more I quit crying and finally relaxed enough to rest.

Little spent today sleeping in CICU. Jeremy came back down and spent the day with us and we even had friends come from home to pray and just BE WITH us. After they left we took time to talk through “next step” options that the doctors shared with us and then took turns staring at our sleeping daughter.

And now I am going to go seek out sleep for myself. I’m going to fall asleep singing the following:

When trials come no longer fear
For in the pain our God draws near
To fire a faith worth more than gold
And there His faithfulness is told
And there His faithfulness is told

Within the night I know Your peace
The breath of God brings strength to me
And new each morning mercy flows
As treasures of the darkness grow
As treasures of the darkness grow

I turn to Wisdom not my own
For every battle You have known
My confidence will rest in You
Your love endures Your ways are good
Your love endures Your ways are good

When I am weary with the cost
I see the triumph of the cross
So in it’s shadow I shall run
Till You complete the work begun
Till You complete the work begun

One day all things will be made new
I’ll see the hope You called me to
And in your kingdom paved with gold
I’ll praise your faithfulness of old
I’ll praise your faithfulness of old

Keith & Kristyn Getty
Copyright © 2005 Thankyou Music

During our three months of off-and-on stays at the hospital it has become quite normal to see multiple nurses AND doctors standing around Little’s bed with their phones out. They are all showing her pictures of their dogs and answering these questions:

1. What’s your dog’s name?

2. Is your dog a boy or a girl?

3. How old’s your dog?

Some get asked about the breed but most of those she knows on sight. Most visitors offer up a story without her asking.

Her nurse today, Sarah, was so tickled by Little’s obvious passion for the canine crowd that she called down and set up a date with the therapy dog in the building. Turns out dogs aren’t allowed on our floor for various reasons, but Little was allowed to go down and meet Nikko, the seven-year-old male Portuguese Water Dog, in the staff lobby. She happened to be wearing the PERFECT T-shirt.

My sister-in-law called this a “sweet mercy” and she is right. It’s another sweet reminder, in the midst of so much brokenness, that He loves our girl and meets her right where she is.