Though I Walk Through The Valley

We arrived in the PICU {Pediatric Intensive Care Unit} last Wednesday because Chloe finally got her designer heart {aka shunt put in}. We were originally told about 2 weeks healing time here, then back up to the NICU. But the NICU is on overload these days, so even though she's been ready to go back up since last Sunday {a surprising 5 days after surgery as opposed to 2 weeks}, here we still are.

But that's ok. Because she's gotten fiesty on us again. Just like she was fiesty a week ago on us...

Because with Chloe, nothing is easy...

I'm not even sure how to process the events of one week ago today. I held her sweet little warm body against mine just hours before her heart surgery. I took a picture of her so I'd have one last image of her perfectly pink skin before another scar is added. I delicately helped with her trach care and I cut a cute Mepilex heart to go around her g-tube. I cried after we walked away and left her in the care of her team for surgery.

We waited in the Ronald McDonald room here at the hospital. I sketched and listened to music. Alan read, because that's what he does to destress. He reads. He endlessly upon endlessly reads. And I feel less scholarly beside him and finally ask what he's reading so intently and he responds, "Calvin and Hobbes."

We watched her cardiac nurse practitioner, whom we grown to love and joke with and fear with and rejoice with, walk through the doors, a tired, weary face, and our hearts drop to our feet, only for her to then sigh and say all is going well. That they've gotten the lines in and made their incision. We wait again, and 45minutes later, she returned and sighed again and said all is well, let's get us to the PICU waiting room because they're closing her up and she's almost done.

We were ushered by her down to the PICU waiting room, took a seat, and I fell asleep in the chair, the adrenaline from the morning wearing quickly now that I knew all was ok. After what seemed like forever, our nurse came rushing in, not to tell us Chloe was back in her room, but to tell us that she just got a call that they needed her back asap. She left. That was that. No additional information. Praise the Lord that when we sent out a prayer request, some dear saints saw and came by immediately because, by the Lord's provision, they were only twenty minutes away. We prayed. We waited. We worried. We decided to try the heart lung bypass while they moved the shunt. It was either that option, or lose her.

By God's healing hand and grace, she survived and was off the bypass almost as soon as she was on it. Her surgery started at about 10:15am. It was after 4pm by the time we were able to be with her. A nurse took us back into the PICU, and a whole new world was before our eyes. More beeping, more monitors, new hallways, more doctors and nurses and equipment. At first glance, it felt like an emergency room with all the busyness. It scared me. It intimidated us both. And for the first time ever, we both missed the NICU. We didn't leave her room. Alan went back to sleep at the house while I slept on the couch in her new room.

Sleep is a heavy word. More like gently awake, or nearly alert. Whatever sleep I got between the hours of midnight when I finally laid my head down and closed my eyes to the bright lights still on, till about two am when I woke up and, only moving my eyes but not my body yet thanks to fatigue, watched Chloe's nurse assessing her. I noticed her sats getting low (low for her these days/post surgery is 70). I watched the monitor up on the wall from my nest on the couch. I watched the sats linger around 70....71....69...68...72. Her nurse was making sure it wasn't that the oxygen sat probe was in the wrong place or not picking up readings well.

70....68....69...68....blinking red numbers...

After assessing the situation, our nurse called in the resident to assess her. She looked her over, listened to her, considered all of the readings on the many monitors, taking careful consideration of every number in this room, then reached for her phone to call the attending.

70...71...68...69...68....67....68....

By now I was on the edge of the couch sitting up and taking everything in, with my phone in hand ready to dail Alan, but holding off because I knew he was in a deep sleep and we'd agreed I wouldn't call unless emergency.

The attending looked her over and during her assessment Chloe began to drop more...

65....66...66...65...64...63...60...56...54...

It didn't make sense. It was 2:30am when I called Alan and tried to explain to him through his weariness that I'd like him to just come sit with me till her sats came back up.

But 2 minutes later, they plummeted into the thirties and danced at 33. By now many people were in the room. I was beginning to shake. My view from the couch meant I could see and hear every single detail. Where was Alan?? Why wasn't he here yet? It felt like an eternity since I called him. It'd been two minutes.

The words I dreaded escaped the lips of the attending, "Ok, make sure we document what time the code started. Ok, start compressions..." Apparently what was happening, and is often the case in bypass patients, is that the blood vessels in her lungs were freaking out and clamping down.

I sat and shook. I watched. I recognized one of the hospital chaplains making his way through the crowd over to me. He knelt beside me, introduced himself, asked if there was anything he could do to help. I said pray. He said, "Ok, how would you like me to pray or what would you like me to pray for?" Bless his heart...he must have been blind.

After he prayed, I tried calling Alan, but no answer. I texted but no response. Surely he would be there soon...and finally, after an eternal 15minutes, he was there, groggily by my side.

I sat and shook. I watched the monitors. I was on high alert. I know enough now to listen well and know exactly what they were doing when, or at least pay enough attention to know what they were doing when far before the doctor had time to come talk to me. They were giving her a treatment through her vent to help her lungs relaxed and breathe. Her sats were up and staying up. Her heart rate never changed.

their view...

...my view. not only could i see what was going on, but worried faces of the physician and nurses...

I knew this was the third time in her tiny life she'd coded and needed compressions. I knew this could be her last breath. I prayed that His will be done, but if possible, could this cup pass; would the Great Physician please heal her now...I wasn't ready to let her go. Not by a long shot. But I knew it was a possibility...

But the Lord stood with me and strengthened me. ~2 Timothy 4:17

He saved her. Again. She fought and won. But it scared us. To the core.

In the days that have followed...I'm not exactly sure how to sum them up. Weary. Tired. Worn. People keep saying we look tired and to get sleep, but we have been. We've actually been getting 8+ hours of sleep since Friday night. We haven't had a full nights sleep in nearly a month. We take naps. We rest. We get out a bit for an hour or two. This isn't lack of sleep; it's 130 days in the NICU. Throw in prenatal testing and diagnosis, and this is what we look like after 36 weeks of this journey. This life. This road. This new road of sorts, where it hasn't even been paved yet because there aren't many like Chloe. This road where, right now, it's still dirt and pebbles and rocks that tear up our shoes because not many others have blazed this trail ahead of us yet...

By Sunday she was doing so good that they really wanted to get her back up to the NICU, but there were no beds available. By Monday, same story. I got to hold her. I cuddled her broken body, gently and ever so carefully. I was terrified that my touch would hurt her, and yet so anxious for her skin to be next to mine, and her chest rising and falling next to mine. Her tower was coming down. Her feeds were coming up. She was doing amazing and smiling and grasping our hands and making more motions/movements. When I left last night, my friend and I were playing with her, talking to her, making eye contact with her.

I felt entirely comfortable leaving her for the night. So comfortable that I stayed up till 2am cleaning out our room at the Ronald McDonald house because she's so close to coming home that we're trying to move out everything from the last 18.5 weeks. We've lived here longer than a semester. It's like cleaning out a dorm room, but more like a dorm room that housed little ones as well. It's as if we're moving our family out of a one bedroom apartment. We didn't even have enough totes or bags because we left that at home, not thinking we'd be taking anymore long weekends home where we'd need to give up our room because surgery wasn't supposed to be scheduled till September. But at this point, we're aiming for 3 day weekends at home now until she comes home, so time to start living out of suitcases. We ended up running to Target yesterday to purchase totes. I cleaned until I dropped. We moved the beds back from when the kids were falling out of them and we created the monster-king-sized-bed while they were with us. Now there are two separate beds again. The furniture is all back in place. It feels bare...and weird...and exciting to be moving forward...and bittersweet at what this tiny room held...

...It's where I healed from childbirth.
...It's where we cried in each other's arms.
...It's where I hid in the shower in the middle of the night on week 4 to cry so that my sobs wouldn't wake the kids.
...It's where we played games and colored and watched movies and told stories.
...It's where we complained that there was never enough room in the bathroom for 2 adults and 2 little creatures at one time.
...It's where we gave thanks for the space He provided.
...It's where we hung scripture verses on the wall and taped a calendar up to mark off the days.
...It's where we consoled our children's weariness.
...It's where we hugged and tickled and played.
...It's where we were a family through the heart of all of this.
...It's our second home, or our "other home, the McDonald House" as Abi called it.
...It's where little fingers pushed Floor 3, and then raced off the elevator to room #36, tripping and skinny toddler knees along the way.

And then there's today. When we were woken up at 7am to a call saying her heart rate kept dropping and they weren't sure why. That there's a possible clot in her PICC line. That she needs a blood transfusion. And I wonder why I even bothered cleaning and packing up our so-called apartment because I knew this was Chloe and this was too good to be true that she was doing so well, and I'm remembering that I'll need to talk to the house manager, the one I spoke with last night telling her our room would be available as of Thursday and I'd need a different one when I get back on Monday, and realizing that now...that most likely won't be the case. But they say they're working on it and they'll look at the PICC line and decide how to best break up the clot and then possibly remove the line. And she's satting good. And her HR is better. And the doctor said hopefully we'll have her back to how she was 24hrs ago soon. And we pray that's the case.

All of this is a journey. A roller coaster. A whirlwind.

And the leaves are about to turn. And it's coming on fall. And soon there will be a brisk morning chill.

And I wonder how much longer...

And we start trading off weeks...one of us here with Chloe, the other home with the kids for a shot at consistency with them...

And I pray she continues to fight.

And I pray for wisdom and knowledge for her doctors. And I pray we stay healthy through all of this. And I beg the Lord to let me know if we're doing ok in all of this--is this how He planned we'd get through this?? Have we honored Him? Have we obeyed?? Have we trusted each step of the way??

And I rest knowing that He is in control. 

{2 days post op design while resting by her bedside}