Donavon Fundraiser Update!

We wanted to send out a big thank you to everyone who so graciously donated toward Donavon's school tuition at Runnymede. You are actively supporting foster care/adoption and the unique challenges that can go along with it and we are so grateful. Thanks to you, we've been able to raise:

$7,495

This is nearly 3 months of tuition ($2500/month)! We are praising the Lord for this. But, if you're like us, you see these links and plan to go back later when you have more time, but life gets busy and you forget. So, here's your official reminder! 

Also, if you visited the Adoptive Families Coalition website previously, you'll see they've recently updated it. And if you click on "Sponsorship Programs" under the Donors tab, you just might see a familiar family picture! Thanks again for considering helping us! Donavon thanks you too!

Click here to donate: http://adoptive.org/donors/donate-now/ 

Remember to put Donavon Minnaar in the memo line.

Fundraising For Donavon!

As many of you know, Donavon has been at a therapeutic boarding school in Missouri since March 2016. The average time it takes to get through the program at Runnymede is 12-18 months. We recently spoke to the director of the school and he estimates that Donavon will likely need another year to complete the program. The maturation we're seeing in him fills us with hope again about our family's future. Our desire is to see this process through to its completion, however, at this point we don't know how we will continue to pay for the monthly tuition.

We're excited to now be working with Adoptive Families Coalition, which is a non-profit, 501(c)(3) organization started by a few families who found themselves in situations similar to ours. AFC helps families fill the financial gap left as state support runs short of the high cost of residential treatment programs. And unlike GoFundMe, 100% of money raised will go straight to Donavon's tuition at Runnymede and is tax deductible for you!

If you're eager to skip my long-winded family updates (believe me, I get that!) and just want to get to the donating part, click the link below. It will take you to the Adoptive Families Coalition website. Click on the "USE OUR SECURE ONLINE DONATION FORM" button and be sure to put "Donavon Minnaar" in the memo box. Thanks so much!! You're literally keeping our family together as we strive to bring our kids before the throne of grace for Christ to give them his blessing.

Here's the link to donate: http://adoptive.org/donors/donate-now/(include "Donavon Minnaar" in the memo line)

EIN# if needed (for foundations or other organizations): 45-4061549

Goal: $25,000 ($2,500/month for 10 months)

Click HERE to read the essay I wrote for our AFC application if you actually do enjoy reading the long-winded explanation/family updates. It's a good summary of how we got where we are today.

If this doesn't work, you might be getting an invitation to a spaghetti dinner...

Adoptive Families Coalition Application Essay

We dropped Donavon off at Runnymede on a crisp March morning last year. It was cold, but the sun shines more in Missouri than it does in Michigan so that was refreshing. Donavon walked over with Bob and knelt down on one knee to meet the dog. Tebow was happy to meet him and I could see his tail wagging as D scratched his belly. We got back in our car and drove down the long driveway back to the country road that would take us back to Kansas City. We didn’t talk much. We were used to the numbness by now, but the weight we were feeling was too much to handle. We distracted ourselves with a movie and then got some dinner, but couldn’t face seeing all those “normal” people in the restaurant so we just ate in the car. We got back to our hotel and I lost it. All the pain and sadness and misery and shame and guilt and failure from the previous 5 years knocked me to the floor and I wept. I’d never done that before. Not like that. Carissa just held me.

I met Carissa in middle school band class. The Lord in his providence put the clarinets next to the saxophones and little did we know, 8 years later we would marry. But prior to that we would spend a year in Romania serving orphans. We always said we’d adopt when we got married someday after seeing what happens to kids who grow up without families. After having our 4 “typical” kids, we decided we didn’t want to be those people who say, “we always talked about adopting, but it just didn’t work out.” So, we took the plunge into the world of foster care and got our license. We received the call one night at dinner. They had 2 boys who needed help and within the hour our doorbell rang. Donavon was 3 and he literally jumped from the social worker’s arms into mine and the first thing he said to me was, “What’s that?” (twisting a mole on my neck). Carissa picked up Kelvin, who was the tiniest 4 week old I’d ever seen. Donavon cried for his mom for a couple hours before finally falling asleep that night. Carissa stroked his head and sang to him. It was likely going to be temporary, but the days turned to weeks, then months and after about a year of courtroom drama and failed drug screens, bio mom’s rights were terminated and they asked if we’d keep them. We were nervous given his extreme behaviors, but just couldn’t say no. I’ve often wondered how it would have been if we had, but that guilt compounds on itself over and over again, so I’ve gotten good at ignoring those thoughts.

Donavon’s behaviors were difficult from day one. He was impulsive, hyperactive, destructive, physically aggressive, and verbally “advanced” (our other kids got an instant R-rated education, he had clearly seen way too much in his 3 years. How does a 3 year old learn to scream, “I hate you, you mother-f---ing b----!?). We struggled to attach to him and he to us. We kept thinking it would improve after the parental rights were terminated or the adoption was finalized and we could finally “love and discipline” as we normally would our other kids. We kept thinking time would heal the wounds of early trauma, but it seemed time was making it worse. He was 5 when the adoption was finalized and we tried home schooling, but it just wasn’t going to work. We tried 1st grade in the public school hoping the structure and social support would help him adjust and he did ok, but life at home was becoming a nightmare. We tried medication for the ADHD and Adjustment Disorder and the side effects were as bad as the behaviors themselves. Therapy was laughable, he just wouldn’t participate. The rest of the family was tossing around the “feelings ball” with the therapist while he was slamming doors and trashing the school room, screaming that he hated us.

Shortly after the adoption, we had the (questionably) bright idea of having one more child the old-fashioned way. 7 kids seemed like a good biblical number and we thought the boys being able to experience the miracle of a new sibling would be healing in some ways for them. At the 20-week ultrasound we lived the feared experience of every parent as the tech grew quiet and then excused herself to go get the doctor. The baby had a spot on her heart. We were referred to the University of Michigan about an hour from our home and learned she had a severe heart defect that would be fatal after she was born unless we went through a series of 3 open-heart surgeries over her first 2-3 years of life, the first being within a few days of her birth. It was one of those record-screeching moments when time stood still. “Nope, that won’t work. You have no idea what our family is like. We can’t do this”, pleaded my desperate wife. Luckily we had 20 more weeks to prepare, but nothing could really get us ready for what would happen next.

Louisa was born and had her first surgery when she was 2 days old. The day after surgery she arrested. They were able to resuscitate her but had to use a life-support machine called ECMO for the following 4 days to keep her alive. She had a bleed on her brain and they had no idea if she was going to survive. Slowly, she gained strength and her little heart recovered and after a month of living in the hospital, we came home. But she was extremely fragile and demanded nearly 100% of our attention -- medications, monitoring, and tube feedings around the clock. It was all very intense. She developed complications after 6 weeks at home and we went back to UofM for an ensuing 7 weeks that included her second open-heart surgery and rocky recovery. She stabilized and we finally came home to re-start “normal” life, knowing her third surgery would be necessary in the next 12-18 months.

Donavon’s behaviors intensified. He was growing violent with us and having rages that were nearly impossible to control. We were struck, kicked, spat-upon, and bit. Our house was gradually being destroyed. We had to put the knives up high in the pantry because he was grabbing for them during rages. And then he began to talk about killing himself. Our property backs up to the highway about 200 yards away and he kept saying he was going to sneak out in the night and go sit in the road waiting for a car to run him over. We tried to keep everyone safe, but then he actually started running for the road a time or two and his aggression toward his parents was starting to lash out to siblings too. We all needed help. Our church provided respite, the doctors and therapists helped too, but nothing was working. Donavon was demanding nearly all of our time and attention and we were starting to see his brother Kelvin following in some similar patterns. We had to do something to save our family.

So, we found Runnymede. We had called multiple organizations both in state and out of state. Most were full or for older/teenage boys. Many wouldn’t accept him because they weren’t equipped to handle his issues. But Runnymede in Missouri was happy to take him. We were pleased to see that their school and working farm shared the same Christian worldview that we hold to. We loved the book list on their website and felt the Lord leading us to trust them with our son. The cost was $3000/month which was reasonable compared to many programs we looked into. But even my salary as a family practice physician wasn’t going to be enough for the usual 12-18 months in their program.

We prayed and some dear friends organized a GoFundMe campaign that raised $18,000. We were shocked and humbled, and knew with that support we could go for it. Our savings could cover another 6 months and then we’d trust the Lord to figure out the rest.

Donavon has done well there. We’ve had 2 breaks over the course of this last year where he came home for ten days each time. While it was still challenging, it was like he had forgotten (at least for now) all the pain and agony in his confused heart. He has been a joy to be around. We all look forward to our Thursday night phone call with D and are eager for our next visit with him this Spring. His progress is slow, however, and Bob says this is typical for the younger boys. He estimates he will need at least another year to complete the program.

We are overjoyed to see Donavon’s progress. And we remain exhausted dealing with adoption related issues for Kelvin, the medical issues for our daughter Louisa, and some health issues related to our parents. We would love for Donavon to be able to complete his program at Runnymede and receive all the benefits that completion could bring. It also affords us some time to focus on the other “issues” at hand with our family. However, our savings has dwindled down and we’re not sure how we’re going to make ends meet. Bob has graciously decreased our tuition to $2500/month. That will help, but we’re looking for some other ways to cover cost. We could re-finance our home or take out a loan, but we’re hoping to keep our debt burden down.

We know our God owns the cattle on a thousand hills (Psalm 50:10) and every inch of the universe is under his sovereign control. We know he can provide for us just as we’ve seen him bring our daughter back to life and breathe joy back into the heart of Donavon. We will faithfully pray that this application is received and if nothing else, hope our story will bolster your faith. We expect you receive a number of petitions for financial assistance and know that our story is not the only one like it. We’re sure the Lord will lead you as he sees best for his Kingdom and we would be humbled to receive any amount of support. Thanks for reading our story. We’ve come a long way from middle school band class and a long way from that goodbye at Runnymede last March. We’re looking forward to our next big “hello Donavon”.

DONATE HERE (be sure to write "Donavon Minnaar" in the memo)

House on fire

When Donavon first came to our family 6 years ago, one of the things that could easily start a rage was if someone asked him to draw a picture. He would get so frustrated that he couldn't draw anything he liked. He would try to draw a house, but it never turned out like the picture he had in his head. He would talk a lot about broken houses with broken steps and broken furniture and broken toys. I'm sure there's a fascinating psychological explanation for all that, but when these things start personally playing out in your family's life, they stop being fascinating and just become kind of sad and sometimes scary. But, don't worry! I fixed that problem right up and taught him how to draw a simple and strong house, and they started showing up in every picture he drew. He would have me draw houses for him to color and then he eventually started drawing them himself. I was pretty proud of that little victory. I thought I was slowly becoming the strong and safe "house" for this kid who had never had one. I mean, that's what I was for my other kids, right? I know how to do it - I'm the mom, it's pretty much my full time job. I wanted to be that for him and if I'm being ugly honest, I wanted other people to see me being that for him and his brother. What a beautiful picture of the gospel in this non-traditional family of people that don't look like each other, right? Right.

Fast forward to 6 months ago, we are in our last of several initial appointments with our new pediatric psychiatrist for Kelvin (after his last one died unexpectedly). Kelvin is jumping from the file cabinet to the chair, ripping the clock and calendar off the wall on his way down. The nice doctor is calmly showing us the picture he asked Kelvin to draw, including a house, which is supposed to symbolize the mom. Of course the picture is barely recognizable. But what do you know? Kelvin explained to the doctor that the deep, dark, red streaks are the freaking house, which is ON FIRE. The doctor shrugs his shoulders. I let out a nervous snort. I guess that's me, House On Fire. I would say it fits, and in more ways than one...

When Louisa came along with all of her medical issues I thought, ok, well I can figure this one out! We have one of the country's top pediatric cardiology centers practically in our backyard. I can protect her, I can keep her safe! They will know how to fix her heart and then I'll bring her home and do the stuff I know how to do. But it turns out when I'm home with her, I'm just waiting for something to go wrong. I feel more comfortable with her in our "hospital home" where things start beeping and nurses start running before I even realize there's a problem. As silly as it sounds, I'm still tormented by the fact that I wasn't even in the room with her when her heart stopped. I was taking a shower. I should've been there going through it with her, holding her hand, stroking her hair and telling her it was going to be ok. I'm her mom. And I can't keep her safe and I can't always be there when the bad things happen.  

So here we are again at a place where I am so painfully aware that I can't be the house for any of these little people. Donavon has been in Missouri for 7 months and we are hoping and praying that good things are happening in his heart there, but some days are harder than others to be hopeful. Meanwhile, it feels like Kelvin is slipping away to a place where it's getting harder and harder to reach him and it is achingly familiar. The school is dumbfounded by his fast regression and has sent him home a few times, he is becoming a major "flight risk" in most environments, he isn't sleeping well anymore, he has successfully called 911 twice this weekend, broke the basement freezer and spoiled the $300 of meat stored in it last week, he ripped his closet door off it's hinges with his bare hands this afternoon, and has become more defiant, oppositional, and just generally unhappy. Louisa had been doing great since her Fontan operation last April and we thought this was going to be the start of our hopefully long "coasting" time that HLHS families talk about in the post-Fontan, pre-complications time period (and it still might be). But 2 weeks ago she had what appeared to be a pretty significant seizure and then her subsequent EEG was abnormal, She has a history of brain insults relating to her surgeries, so we're not sure where we'll be heading with her in the neurological department. I want her to be ok! And then I want to slap myself for holding her too tightly. And then I feel crazy.

Once again, it feels like I'm standing on the edge of some sort of cliff with all 7 of my kids and I'm trying to grab each of them to keep them from slipping off, but I can't hold them all at the same time, so when I catch the arm of one, someone else starts slipping out of my grasp. Obviously, this is not a theologically sound picture of what's actually happening. I am not the house keeping them safe or the immovable rock they can stand on or the everlasting arms that are holding any of them. I know the truth and I know the promises and I believe them. I just can't feel it very much right now. The numbness and weariness and grief and fear is so overwhelming at times. I want my sweet baby to grow up. I want my little boy to be carefree and laugh again. I want my big boy to be able to live with us and to trust our love. And I want my 4 other kids to thrive and not grow bitter in the midst of these consuming issues. Please Jesus.

One of my favorites, this passage from Holiness, by J.C. Ryle:

"If any reader of this paper really feels that he has counted the cost, and taken up the cross, I bid him persevere and press on. I dare say you often feel your heart faint, and are sorely tempted to give up in despair. Your enemies seem so many, your besetting sins so strong, your friends so few, the way so steep and narrow, you hardly know what to do. But still I say, persevere and press on. 

The time is very short. A few more years of watching and praying, a few more tossings on the sea of this world, a few more deaths and changes, a few more winters and summers, and all will be over. We shall have fought our last battle, and shall need to fight no more. 

The presence and company of Christ will make amends for all we suffer here below. When we see as we have been seen, and look back on the journey of life, we shall wonder at our own faintness of heart. We shall marvel that we made so much of our cross, and thought so little of our crown. We shall marvel that in “counting the cost” we could ever doubt on which side the balance of profit lay. Let us take courage. We are not far from home."

YES. We are not far from home...

Ditch

We call Donavon on Thursday nights at 8:30 PM EST, 7:30 PM CST. We talk for 30 minutes and usually pass the phone around so everyone in the family can have a turn saying hello. We cover important details like, "What did you have for dinner tonight?" and "What did you do in school today?" and "Is it still hot down there?"  We were excited to call him this week because he was coming off his personal best score since heading down to Runnymede in March (the boys there receive a weekly report that includes scores for school accomplishment, Bible memory and catechism, chores, physical education, and behavior. It's a pretty complex grid that they send out each week, I'm still trying to figure it out after 6 months!). I was sure he was going to be pretty hyped up -- eager to tell us all about it. One of his mentors always answers the phone and gives me a brief update on how his week has been. I could tell right away, things weren't going as well as we'd thought.

"We've noticed especially with the younger boys they tend to have a bad week coming off of a good one. Donavon's had a tough week, mostly in school. He's had Ditch two days in a row. In fact, he's finishing Ditch now. He's sitting on the tire while he talks to you. Here's your son. I hope you guys enjoy your phone call."

It's a big tractor tire and they have to flip it a number of times across a "ditch" along the side of the long driveway that leads up to Runnymede from the road. It's sort of the ultimate consequence for defiant behavior. I once asked Donavon, "What happens if you refuse to do it?" He said, "You can't refuse to do it. You have to do it." "Well, I mean what if a kid just said he wouldn't do it and night came?" "Then you'd just have to go to bed and as soon as you woke up, you'd have to go back to it."

I imagine him sitting there on the tire -- hot, sweaty, dirty, out of breath. "Hi Dad." His voice was down, broken, discouraged. But this was a slightly different voice than I've heard before. Usually in this case you'd hear anger in his voice, or perhaps a whining tone of injustice. This sounded more like remorse. I could be wrong. It might have been exhaustion. Perhaps he was homesick. Maybe just annoyed. In fact, I haven't heard remorse in Donavon's voice much in the 6 years I've been fathering him, so maybe I wouldn't recognize it anyway. That was one of the things that struck some fear in our hearts over the difficult years with Donavon. He was capable of some pretty awful things and we were occasionally successful at getting an apology out of him, but we never had a sense that he was remorseful -- you know, truly sorry for what he'd done, sad that he'd disappointed his parents, ashamed of falling short. These were the times you couldn't help but compare him to his siblings who understood when they'd let their father down. Some of them will burst into tears with merely a look of disappointment from their dad. But not Donavon.

There we were on the phone together -- me pacing up and down my driveway in Michigan and Donavon sitting on a dirty tire in southern Missouri. He was crying, weeping really, and I was trying to be a good dad in my 30 allotted minutes for the week, 730 miles away. I wanted to fly down there and sit on that tire with him and put my arm around him. If they were making a faith-based film about us I'd start helping him flip the tire through the ditch in slow motion with some country-pop Christian band playing an inspirational song. But, life isn't a faith-based film, not mine anyway. I had 30 minutes, well, by now more like 15 because I knew his sibs still wanted to say hi to him. This is our life now. This is a kind of parenting that you don't find in parenting books -- even in the appendix of one.

So, I fumbled around with what I hoped would inspire him to press on, fight the good fight of faith, go in the strength of the Lord. I said, "Donavon, you know the Lord is with you. You can ask him for the strength to do this and he will hear you." To which he replied, "It seems like when I pray the night before that I'll be good, I have a bad day the next day. But when I forget to pray I do better."

Gulp. Ok, now I'm down to 10 minutes. How can I assure this troubled boy who has had 9 rather unconventional and difficult years of life that all I've taught him about the Lord is indeed true and trustworthy? I was shocked by his observation about prayer actually. Donavon is a bright boy. He is capable of learning the right answers and he knows how to tell you what you want to hear. But the fact that he noticed this thing about his experience with prayer was a surprise to me. Is he really praying? Is he truly interacting with the triune God of the universe? Is he actually calling out to Him for help? What great hope that gives me. For I know that if he seeks, he will find. If he knocks, the door will be opened to him. If he asks, it will be granted him.

But what do I do with this observation. It's one I know all too well. I've asked the Lord for things, but it seems like sometimes he grants the opposite of my request. And certainly there are times I've been blessed without asking. In fact, I've been too bitter to ask, and yet, He has richly poured out blessing upon me. How many times did I plead with God to make the tantrum stop, only to have it intensify. I remember begging the Lord that he'd fall asleep, only to get another blood curdling scream in my ear. We've asked for peace, only to wake up to a war at our breakfast table. What's the use in praying? Is it effectual at all? So many of my prayers have gone unanswered. Well, seemingly unanswered. Or have they?

Donavon and I talked about the Lord working in mysterious ways. We talked about God asking Abraham to sacrifice Isaac, but Abraham having the faith to believe that God could raise Isaac from the dead if necessary. We talked about taking a step back and looking at the bigger view of things. There might be bad days here and there, even bad weeks, or bad months, or bad years in our lives, but God sees our WHOLE life. Even looking back to March, he should be able to see great progress. So, maybe it doesn't look like an answered prayer today, with today's issues happening right before your eyes. But if you take a step back, perhaps you can see the Lord working and answering.

This little struggle of Donavon's was hitting close to my heart. Raising Donavon and Kelvin sometimes feels like Ditch to me. It feels like a dirty, heavy tire. Flipping uphill. Just flipping. Over and over and over for no purpose other than to teach me a lesson. And how many times do I have to flip it before I learn the lesson? It seems like I should have learned it by now.

I said goodnight to him. He was still crying. I don't know if he was feeling any hope. I prayed for him. Our family gathered together, the little girls crying over their brother, and we prayed. In fact, when you only have 30 minutes/week to be a parent, you're often left with only one parenting tool -- prayer. And really, it's the best tool. I sat down and wrote Donavon a letter to follow up our brief conversation. I focused it on Psalm 126:

"When the Lord restored the fortunes of Zion, we were like those who dream. Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, 'The Lord has done great things for them.' The Lord has done great things for us; we are glad. Restore our fortunes, O Lord, like streams in the Negeb! Those who sow in tears shall reap with shouts of joy! He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him."

This is what I told Donavon about the Psalm:

Here’s the story behind this Psalm. The Israelites were slaves in Babylon. The Lord sent them there because of their sin, but he sent them there with a promise that he would one day restore them -- bring them back to their home. When he finally did after many years, they could hardly believe it. They thought they were dreaming (verse 1). They became so happy, they were laughing uncontrollably and shouting with joy (verse 2)! They were so excited. Then, in verses 5 and 6 the Psalmist reminds them that they went to Babylon very scared, crying over their sin and wickedness. But God turned their tears into joy. He said it was like the tears were seeds put in the ground, but after much time, up came lovely fruit! It makes me think of the melons and tomatoes and potatoes and corn that you guys grow at Runnymede.

So, how does God bring us from crying about our sin to laughing with intense joy? Sin certainly isn’t funny. He does it through Jesus. Jesus is the way that weeping over our sin turns into joy over our salvation. But think about it. How would we appreciate the amazing joy and laughter that our salvation brings us if we didn’t FIRST have a time of sadness, crying, weeping? If we care about our sin, we’ll cry over it. Our sin is really awful, disgusting, and horrible. It should make us cry. If it doesn’t, then we probably don’t understand how truly terrible we are and how truly holy God is.

But, just as the seed over time grows into a lovely fruit that you can enjoy, your tears can turn into amazing joy in being saved, in being adopted into God’s family, being his son. So, Donavon, I’m not entirely sure what your tears were all about on the phone on Thursday, but I wonder if the Lord might be showing you your sin and it’s making you sad. Maybe not, maybe you were just angry, or tired, or frustrated. But I sensed that maybe you were understanding something about your sin. And if that’s true, then I’m confident that over time, you’ll know the joy of being saved. So, that’s why I said I was glad to hear you crying.

I'm just beginning to understand something about the Lord and suffering. It's starting to make some sense. It's ok to ask him for relief and it's good to ask. The Psalms are full of that. But, it's also good to learn to be content in your sufferings. In fact, we can find joy in them. I dare say, I might be finding some joy even now as I write this. There is much I have to be thankful for. It's easy to be thankful for my beautiful wife -- full of strength and wisdom. It's easy to be glad over my "typical" children who do well in school and make me proud in their athletic endeavors and performances. It's easy to be thankful for my comfortable home and my new (used) Jeep! But, I'm beginning to grow a deeper appreciation and now even a gratitude for the Lord's providence in bringing me pain. This pain is maybe, just maybe beginning to send a shoot up above the soil. The tears of sorrow that were planted have taken root. There are seedlings and there is hope that their will be choice fruit some day. I'm not naive. What looks like a lovely shoot early on could indeed sprout up to be a thistle. But even that will be a providence that produces a tear that can be sown and later reaped in joy.

It's my prayer that I'll bring that fruit to the wedding banquet of the King. I'll cut into it and among the multitude I'll hand a piece to Carissa, and Noah, and Natalie, and Francesca, and Maizy, and Louisa, and Kelvin, and Donavon. I'll watch him bite into it and see that big grin of his. And we'll all watch as his grin turns into a chuckle, and then a big, snorting, belly laugh! I imagine I'll look over his shoulder and see something off in the distance near one of heaven's trees, next to a ditch, perhaps with some tall grass growing over it since it hasn't been moved in a long while. Sure enough, it's that crazy Runnymede tractor tire. And I'll give a shout of joy.

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

Guest blogger: Louisa after her cath

Thank goodness I don't have to do that every day. It felt so foreign and wrong, but the weird thing is it felt familiar and normal at the same time. I'm only 2 years old, so it's kind of hard to sort this out in my brain. But I'll do my best to tell you about my day last Thursday. That place is like an alternate universe. I once heard of this show called the Twilight Zone. Dad says the hospital could host an entire season of that show. This is my hospital. It has such a long name -- C.S. Mott Children's Hospital and Von Voigtlander Women's Hospital. There's no way I could ever say that. I'm only saying 2, and occasionally 3-word sentences. I guess that's why most people just say "Mott". But some people say "Motts" with an "s" and that just reminds me of applesauce.

2 days ago everyone in my family was home. It was a normal day of cereal and school work, peanut butter and jelly sandwiches, some chores, dinner, dance class, soccer and track practice and then bed time. For me, it was a Baby Einstein episode, a Ba-ba, flipping a couple cereal bowls, a bath, trashing my brother's puzzle, banging on an open computer, sneaking into the pantry and downing who knows how many mini Reese's peanut butter cups (I don't really count past 3 yet, so all I know is it was more than 3). It was normal and familiar. Today, they woke me up at 5:45 AM! Mom always says, "never wake a sleeping baby." I wonder why she broke her rule. Then they put me in the car without a Ba-ba. "Ba-ba? Ba-ba?", I protested. Why on earth did mom and dad get to drive through Tim Hortons and I got nothing? They were hiding their food, but I could smell it! Something about the day wasn't right. When you're 2, it's confusing. Soon I'd be back in that place where people do strange things to you, but act like it's completely normal.

We drove through the rain. Dad seemed a little nervous, maybe because it was raining so hard and the semi trucks were going so fast spitting water all over the windshield. He said he was glad he replaced the wiper blades last night and the headlamp bulb. Dad brags to Mom when he fixes something in the car. I think it makes him feel more like a man or something. But I'll bet real car guys would laugh at him for thinking changing a bulb and wiper blades is a "car repair". But it does seem to impress Mom nonetheless. Mom was freaking out again in the car. Dad kept telling her to relax, but it wasn't working. She starts talking fast and loud when she's nervous. She probably needed her coffee or something.


We finally pulled up to that monstrosity of a health system. We always come in from the north and see the adult hospital first. I think it looks like a former Soviet Union hospital would look. It's just a gigantic heap of pale yellow concrete with those big block Ms on the top.
The traffic was stopped for a minute because a helicopter was taking off. That was pretty neat to see. I hope I never have to ride in one of those though. They fly over our house a lot and Dad likes to joke that maybe one day it will land in our front yard to bring me here. That would be crazy. Finally we rounded the bend and I saw my hospital. It looked so much better than the adult one. It has lots of windows and colorful lights inside. It's real curvy too, not like the adult hospital shaped like cinder blocks. Mom said they should've made the parking ramp taller for such a big hospital. We had to go round and round that ramp until someone gave up their spot for us.

We went inside and got our stickers from the nice guys in suits at the desk. They ask the same questions every time. It's nice of them to care about us - whether we've been sick lately and if we've gone on vacation outside the country - but sometimes they say it in a way that seems like they don't really care. They sound a little like robots, but they're still really nice. Mom and Dad went to Florida, but I guess that's not outside the country because they didn't say anything about it. We first stopped at the desk on the 3rd floor and checked in. They called me back to a big room with a tiny chair that seemed pretty high off the ground. Dad put me in that chair and some lady strapped me to it with these tight velcro straps with my arms above my head and I couldn't move at all! I was really scared. Then they all just left me there and stood behind a wall with a window. Mom and Dad were waving and smiling and acting like I should be excited about this, but I wasn't! It was weird and scary! Then I heard a beep and the lady turned my chair sideways, more waving and smiling from Mom and Dad and then another beep and then they finally unstrapped me. I didn't like that. But, it was pretty quick I guess. Next, we rode the elevator up to the 11th floor.

One of the nice nurses met us there and took us back to a room. The doctor came in to talk to Mom and Dad. He made some funny faces at me and said I was cute. That made me feel like I could trust him. Mom and Dad were a little nervous because it wasn't the doctor I usually see. I guess he got sick with the flu or something so they sent this guy instead. I didn't know doctors could get sick too. The nice doctor had Dad sign a paper. He was saying things like "perforation, cardiac arrest, bleeding, stroke, death". Those sounded like bad things, but maybe Dad had to sign that paper to say he didn't want any of those things to happen to me. Anyway, the doctor said they use really flexible instruments in my blood vessels so that stuff usually doesn't happen. Usually?

                                         

Then we walked to another room and they checked my oxygen level and then I had visits from some of my favorite nurses. Mom squeezed some weird red medicine into my mouth. It wasn't long before I started to feel really strange. I felt kind of warm and dizzy and things started to seem kind of fuzzy. Maybe mom should take some of that medicine! It sure made me feel pretty relaxed. And that's what Dad always says to her, "relax". Yeah, she should definitely get some of that stuff. Then Mom and Dad said goodbye to me. They seemed kind of nervous, but my favorite nurse was there and she kept them pretty distracted. I think God sent my nice nurse to come and talk to them so they wouldn't freak out. That was a good idea. Then that weird guy and the lady with a funny paper hat wheeled me away from Mom and Dad. That guy put this mask over my mouth and nose. I was scared for about 3 seconds, but then, I fell asleep.

The next thing I knew I was waking up in another room. There were wires all over me again. And I felt so tired. My eyes were heavy like my lids were filled with sand and I couldn't focus my eyes. There was that light taped to my finger and an IV in my hand and my throat was sore. I was trying to call for Mom and Dad but my throat was so scratchy.
It was such a relief when they came in. They seemed really glad to see me. But, all I could think about was my Ba-ba. I wanted it so bad. The nurse said I needed to be careful because of the anesthesia and not drink too much too fast or I might puke. But that cold milk felt so good on my throat. I chugged half of it down right away and then Dad yanked it out of my mouth. I guess he wanted me to obey the nurse, but I was mad and I started to go crazy and tried to climb out of my crib. I must have been holding my breath because my sats started dropping into the 50s and the nurse came running in. They stuck that oxygen mask in my face and calmed me down. I guess I was ok, but Mom got scared at how gray I turned. The nurses said not to worry, it was just the anesthesia. Mom did her nervous half-laugh and said, "So, this isn't going to happen again tonight at home, right?"

                                        

I calmed down and took a long nap. I felt a lot better when I woke up and they let me eat some food. I had to lay down for 4 hours after my cath. Mom thought that would be hard for me, but I felt so crazy, it was nice to just lay there. Finally, they said I could go home. I slept the whole way. But while I slept, I could hear Mom and Dad talking about my cath. They were saying how glad they were that things went smoothly. They talked about how the Lord answered their prayers and that so many other people were praying for me too.

Dad was talking about how awful it felt when the lady said the doctor wanted to meet with them and showed them to a consultation room. Dad was remembering how many times they waited in consultation rooms for bad news. There was the consultation room at Sparrow after their first ultrasound, and the consultation room during the first visit to Mott when Mom was still pregnant and they talked about all the things that would happen to me. And the consultation room they waited in when I arrested after my first surgery. Dad thinks they should call them "bad news rooms". So, they waited for what felt like 6 hours. Dad said he just kept wondering if maybe they would come in with more bad news, or even the worst news. He wondered if he'd given me my last kiss when he said goodbye to me before my cath. He remembered his first kiss right after I was born. He said to Mom, "At least they haven't sent a social worker...yet." Finally, he saw the doctor's face coming toward the door and he knew by the bright look in his eyes that things were ok. He told them about my pressures in my ventricle and in my pulmonary arteries. He thinks it was 12 in the arteries and 7 in the ventricle and that that gradient was perfect for moving ahead with the Fontan surgery. I guess I had this big mess of collateral blood vessels coming off my right internal mammary artery.
The doctor said that wasn't going to be good for me so he put a big plug in it (even though it seems like usually plugged arteries are a bad thing. But, this guy did seem to know what he was doing). He showed Mom and Dad the pictures. It looked pretty impressive. I guess I won't have a RIMA for the rest of my life. Oh well, I don't have a left ventricle either.


So, it was kind of a crazy day for me. For all those nice people at Mott, it was just a usual day. They'll do the same things to some other kids tomorrow. They'll stick IVs in them and run catheters in their arteries and veins, and strap them to walls to get xrays. To them, it's normal. To me, it feels a little strange. But, I agree with Dad, the strangeness has almost become a comfort. I guess the more we do here, the more it feels normal. Come to think of it, this crazy stuff is all I've ever known. I guess it is actually normal for me. I don't know if it will ever be "normal" to Mom and Dad. Mom still shakes sometimes and Dad said he's pretty sure there will be more consultation rooms in their future with me. At Mott they're always saying things like, "Thank you Jesus" and "Please Lord". I guess Mott has taught them a lot about God. That seems good. Hopefully I'll learn a lot about God too. It seems like maybe that's the whole point of this. At least that's what Dad says. So, I guess I should look forward to the Fontan - it's supposed to happen pretty soon!

On the left is the before picture of some collaterals. On the right is after placing a plug and a coil.

On the left is a nice picture of the aortic arch. On the right is the extensive collaterals to the lung off the RIMA.

The hemi-Fontan circuit and pulmonary arteries.