What a difference a year (or two) makes

3 month old Louisa at Mott

Louisa today, 4 days post-op

Two years ago today we were on the same floor of the same hospital, in the very early days of a 7 week hospital stay. There were a lot of doctors and nurses scratching there heads. Here at Mott, they round on you every morning. There's a huge team -- doctors, nurse practitioners, nurses, nutritionists, pharmacists, fellows, residents, students. Many mornings 2 years ago, they would all march into our room and circle the crib of this little girl and not really know what was going on. We were just waiting. Waiting to see if she'd get better, or waiting to see if she'd get worse and they'd figure out what had to be done. Sure enough, she got worse and they figured out she needed surgery sooner rather than later. And eventually, after 7 weeks, she recovered and we went home. Some damage was done -- some blood clots, some strokes, some brain bleeds. But, she didn't seem all that bothered by it. Those things affected us more than her. We began to really see how fragile this little girl's life was. But watching her battle through it all gave us an even more important insight, namely that God is infinitely more powerful than we are knowledgeable.

So, here we are 2 years later in the same hospital with a little girl who has experienced the Lord's power again, This time, in a completely different way. No one is confused this time. No one is baffled. The surgery was "straight forward" and so far the recovery is "as expected". The team has come around each morning but the faces aren't blank this time. They are just smiling and nodding and going through their protocols. It's amazing. "Do you have any questions?" they always ask. In my head I'm thinking, "When is it going to go terribly bad? When is her heart going to stop? When is some bizarre complication going to happen that no one can figure out?" But I look at their faces again and they are bright and they're not confused or concerned. We haven't heard the words, "Hmm, I don't know..." yet.

We're praising the Lord that he answered our prayers. But, we're not naive. Bad things could still happen. Her chest tube drainage has slowed down. In fact, one was slowed enough that they just pulled it out. But the drainage could pick up again once she starts moving around. And it might become chylous (lymphatic fluid) that could mess a few things up. And alarms go off here. In fact, one just went off and the group of medical people standing outside our door ran off, but they're back pretty quick and all smiling. Must have been a false alarm -- the best kind of alarm. I instinctively looked up at Louisa's monitor to make sure it wasn't her heart that wasn't beating. But those little spikes are marching along at 118 beats/minute and her oxygen level looks good. No alarm here. Not this time.

So now what? We're status post Fontan. In the short term, we advance her diet as tolerated, monitor the fluid output, get her up and walking, and hopefully in a week or so, get the other two chest tubes out and go home. What an amazing day that will be. When I pulled out of the garage at 5 AM on Monday to head for Ann Arbor, I wondered if I'd pull back into that garage with Louisa in her car seat or if it would be empty. After that we'll come back for follow-up visits and maybe an ECHO every 6 months for a while and then yearly probably (I don't really know). But then we're in the weird no-man's land, in limbo. Medicine has advanced to get her this far, but no one really knows what comes next.

Don't get me wrong, we begged and pleaded to reach this stage. We are overjoyed to have gotten this far. We don't deserve it and it's by the Lord's mercy that we're here. It just feels like a weird stage to be in for the first time. From the moment we got the diagnosis we were moving one step at a time and had a surgical stage to aim for. Now we're done. Either she takes off with this new anatomy or she doesn't. Only time will tell. But I might be getting just a bit ahead of myself. We're still here in this place. It does have a way of sucking you in and not letting you go.

It does feel strange. Did we really move out of the ICU for the last time? Did I just shake Dr. Ohye's hand for the last time after a surgery? And there are rooms here that my memories are still living in. They hit you suddenly and play like a movie in your mind -- with the edges kind of fuzzy or blurred so you know they're just memories. Or maybe without any audio, just the video. I took a quick glance in the consultation room where we came undone on arrest day. I could see the doctor and the nurse and the social worker leaning against that wall and telling us what was happening.  I sat in the same chair to call my parents 2 days ago to give a good report that I remember crying in when I called 2 years ago. I walked past the room down the hall expecting to see one of the families that was here last time, but they are gone now. Some went home to their "post-Fontan" life, others we knew drove home with empty car seats. I see the table where we had the Pizza House dinner with Christina and Elliott Orr, who is with the Lord now. Some of these are hard memories, but I'm beginning to cherish them as evidences of God's grace in our lives.

It feels like we've learned enough. But, we know there's more to come. I'm not sure if it's tomorrow, next week, next year, or 20 years from now. And I'm not sure what it will look like. The Lord knows, and that has to be enough. I wouldn't want it any other way. He has shown us time and time again that his all-sufficient grace will keep us from drowning in the deep waters. Though, if he saw fit to come back right now to make all things right -- no more sin, no more tears, no more pokes, no more single ventricles, no more central lines, no more chest tubes, no more sternotomies, no more ventilators, no more de-sats, no more heart failure -- that'd be ok with me too. Come Lord Jesus.

Day 1 post-op

Day 2

Day 2

Day 3

Day 4

She got a big girl bed so Mom and Dad can watch Baby Einstein with her

These short people visiting 2 years ago

Visiting in their current ginormous bodies

So happy to be together today

Wide-eyed girls visiting 2 years ago when their sister was
very sick