Louisa's belly flop

So last night was my shift watching Louisa.  Carissa went home to be with the other 6 and I went from work to the hospital.  I hadn't seen her in a day and a half and it was the first time I had seen her since her new transhepatic (across the liver) PICC line had been placed on Monday.  My first thought when I saw her was, "Hmm.  This doesn't look like my kid."  Her eyes were sunken and her gaze was distant.  No glimmer in her eye.  I figured, "well, she had a hard day yesterday and that line tunneled through the abdominal wall has to be uncomfortable."  Anyway, she dozed off in my arms and when she woke up, she seemed a bit more her happy self.  She was smiling at me and Carissa's cousin Suzanne who had popped in for a visit.  She seemed pretty much ok.

She remained fussy for a bit in the evening, but pretty much slept.  I was getting her all tucked in to bed and noticed that her belly looked distended.  I pointed it out to the nurse and she agreed, but we thought we'd just watch it since her vitals were stable and she seemed comfortable. At 1 AM she woke up all upset.  I think she even puked a bit and she looked terrible.  Her eyes gave it away.  In medical school and again in residency I did a forensic pathology rotation (autopsies in the morgue).  There is so much life in the eyes.  You tend to take it for granted until you see a corpse or a person who is really sick.  Her eyes gave it away.  Something was wrong.

We paged the resident on call and she ordered an xray and her bowel gas pattern looked ok.  At that point, we were thinking it was something to do with her gut since that's why she was admitted in the first place.  But apparently, that PICC line had somehow migrated out of place and into the abdominal cavity.  It wasn't noticed initially and we decided to press on, just back off on the feedings a bit.  An hour went by and she puked again.  She just looked terrible and I was trying hard to keep my dad mind from crossing over into my doctor mind.  I couldn't help myself though.  Was there bleeding?  Was that line causing the liver to bleed?  No, her vitals would be messed up in that case.  Infection?  No, fever or some other sign.  The dreaded necrotizing enterocolitis that they were worried about on admission?  Probably not, no blood in the stool.  Small bowel obstruction?  No, she's still pooping.  Ileus?  That sounds right.  Just a sluggish gut.  Keep feeding it and it will wake up.  Or just stop the feeds and let it rest.  I convinced the resident to go with just stopping the feeds until the day team who knows her well would be in in just a couple more hours.  But she was getting worse -- breathing harder, more lethargic, and she was not peeing.  She hadn't peed in hours.  At around 7 AM, the cardiology fellow who has been following Louisa came in.  He took one look at her and knew something was up.  He checked the xray and came back in.  He grabbed a chair to sit down.  It's always a bad sign when doctors in the hospital sit down.  He knew right away the line was in the wrong spot.
And then it all made sense.  We were pumping all that TPN and lipids that were supposed to go into her vasculature to support her nutrition while she wasn't eating directly into her abdominal cavity.  All that hydration in her belly, not her veins.  She was terribly dehydrated and that's why she looked so awful and the pain of that huge belly.  Poor girl.

It was at that moment that things started to get a little scary.   The room filled with doctors and they did their doctor thing and came up with a plan. They were able to drain the fluid out through the PICC line, now turned into a drain line.  Check out these pics of what they pulled out, 516 mLs altogether (just over half a liter).  I can't believe her belly held all that in.

That's a lot of fluid that was in that baby belly.

No one can explain how this line migrated out of the liver.  One doctor said this morning that out of thousands of lines they see each year, they puncture through the blood vessel maybe a half dozen times, but he's never seen one do this.  He said, "I hate to say this, but it's just plain bad luck".  Of course, we know that the line failed like this by some strange providence of God.

So, we're back in the ICU to wait and watch.  We have to see how her belly will handle all that fluid that was in there.  The ICU is a weird place.  So busy, so many sick kids.  There are familiar faces of people who nursed us through some intense darkness.  It's comforting and nauseating all at the same time.

She's looking so much better.  The IV fluids have helped a ton.  Right now they are working on getting a new line in.  They think they might have found a vessel in the leg after all and they are trying that now.  If it fails, they'll likely go for a line that goes through the back into the veins along the spine -- sounds crazy, "but don't worry, these are really stable lines."  Hmm, I'm pretty sure that's what they said about the transhepatic line.

The truth is, lines are stable because the Lord is stable.  Lines are unstable because the Lord is stable.  He's so stable, that any amount of instability gets swallowed up by his immense stability.  This gives me great comfort.  Sure, it's nice to hear a doctor say that this line will be stable.  But behind that, we know that even if something unstable happens, it does so in a cosmically stable way as directed by the manager of the universe.

So, I'm praying for one of those big Louisa smiles and bright, vivacious eyes that we saw all last week.  I think when I see that again, I'll know we're moving in the right direction.  It looks something like this:

The Lord is kind in all his works

Why are you cast down, O my soul,
    and why are you in turmoil within me?
Hope in God; for I shall again praise him,
    my salvation and my God.

Ps. 42:11

It's been a rough couple of days.  I (Carissa) feel like I have simply been crying out, "How long, O Lord?" quite a bit and asking for mercy again for my baby and for the rest of the kids.  I know the Lord is sovereign over every little detail in Louisa's life and in our family's life, but it feels like the little details just haven't been going well and we're so tired!  Can't we catch a break here, Lord?  After her cath to place the picc line yesterday, we found out that the femoral veins in both of her legs were already occluded and are most likely unusable for future caths and central lines (which she will need in June for her next surgery) and they had to place the line through her liver.  That was another unexpected piece of bad news after finding out the day before that she will likely be in the hospital for a minimum of another week while they try to figure out why she is having the GI bleed.  And when I start to think of trying to make more plans for the kids, transportation to things, leaving Louisa, splitting time with Nick between home and hospital, I want to throw up!  I can't do it anymore!

So this morning when I woke up at the hospital by myself, I was not feeling super full of exuberant faith and hope.  But then I got three different texts/emails that gave me little reminders of where my hope lies (will I ever not need constant reminders?):

You are a hiding place for me;  you preserve me from trouble; you surround me with shouts of deliverance.  Ps. 32:7

¹⁷ The Lord is righteous in all his ways
    and kind in all his works.
¹⁸ The Lord is near to all who call on him,
    to all who call on him in truth.
¹⁹ He fulfills the desire of those who fear him;
    he also hears their cry and saves them.  Ps. 145

"Sometimes the spark of faith is light and does not make the darkness bright, but keep it lit and you will find far better this than being blind. One little flame when all is night proves there is such a thing as light. Remember now the place and price where Jesus promised paradise, one answered prayer when all is gone will give you hope to wait for dawn." - excerpt from a poem on Job by John Piper.

And then my dear friend Heidi made a call and set up a couple things to take care of the kids so I didn't even have to think about it... and I was trying to figure out dinner for Thursday night.  I started to text my dear Aunt Judy to ask if she could possibly find someone that could bring some food (again, ugh!) because Nick and I were both going to try and be at the hospital that night.  WHILE I was texting her, I received a text FROM her that said our dear Chinese friends asked her if they could bring us a meal on Thursday because that day is Louisa's 100th day of life and that is an important day in Chinese culture!  The Lord literally fulfilled that need perfectly before I even asked.  Just a little reminder that He DOES care about the details and that He is kind and likes to give good gifts to his children.

Thank you Lord for your Word and for the many dear brothers and sisters that hold us up again and again when we simply can't do it anymore.  You have given us much mercy, when we deserve none.  We will keep asking for more.  

  

  Bless the Lord, O my soul,

    and all that is within me,
    bless his holy name!
² Bless the Lord, O my soul,
    and forget not all his benefits,
³ who forgives all your iniquity,
    who heals all your diseases,
⁴ who redeems your life from the pit,
    who crowns you with steadfast love and mercy,
⁵ who satisfies you with good
    so that your youth is renewed like the eagle's.  Ps. 103

Louisa is still behind bars

Our dear little one has been trying to get herself out of here after her GI bleed 10 days ago.  She finished her 5 day course of antibiotics and nothing by mouth on Wednesday and they commenced with her re-feeding -- very slowly at first and gradually ramping up to full feeds yesterday.  But then this morning, there was more blood in the diaper.  The clock has been temporarily re-set and we are again waiting...

No one can really give us a straight answer.  The "protocol" is all over the place and appears to be pretty attending doctor specific (I love protocols that don't seem to follow a protocol.  Why do we do that in medicine?).  Some will automatically go with 5-7 days of antibiotics again no matter how much blood or for how long.  This would then be followed by the re-feeding process and the pins and needles waiting for bloody poo.  The weekend team has basically punted until the new Monday team arrives in the morning.  We'll meet a new doctor and he/she will decide our fate for the week.

Of course, Louisa's fate was decided well before the foundations of the earth were established how ever many thousands or millions of years ago (shall we settle young vs old earth here?  Maybe the next post...).   She is just one of billions of people that the Lord cares for and looks after.  He gave her to us as the seventh kid.  Six others came before her.  We were just thinking how much easier this would have been had she been the first.  I could just commute to work from the hospital and Carissa could stay here with no thoughts of home.  But then again, our kids wouldn't be learning all there is to learn about our great God through this.

We are growing weary, no doubt.  And our kids are growing weary.  This unexpected stay at hotel Mott has lost its luster.  The kids are more quickly frustrated with the lack of parental involvement in their lives.  This isn't getting any easier.  They are doing so good to remain strong, but how much more of this can they take?  Will they continue to believe us that the Lord has our good in mind when as far as they can tell, this completely stinks and is just plain bad?  We are confident that just as the Lord put Louisa on life support in order to pull her off, He'll do the same for any of our other kids who go on spiritual life support in order to bring glory to His name when He takes them off.

These days have a different sort of darkness to them than the days in January/February did.  Those days seemed to make some sort of sense.  We knew her condition was a serious one.  We knew the surgery was risky.  We knew there were all kinds of complications.  We knew a month in the hospital post-op was a real possibility since the AVERAGE length of stay was 2-3 weeks.  It was hard - we didn't expect cardiac arrest and ECMO, but in a way, we did expect it.  This just feels a bit cruel.  I know I'm in dangerous territory here.  I know that my Heavenly Father is not cruel.  But what is the use in dragging this on?  What is the use in having a phlebotomist struggle for 10 minutes with a needle in Louisa's arm with NOTHING coming out when she's already been through so much?  Did her lungs really need a 10 minute work-out?  What's the use in her having a 7th IV in 10 days?  What's the use in our 6 kids going parentless for ANOTHER week?  What's the use in the boys losing a mom (for the second time!) when they were just settling in to their new family?  What's the use in leaving Louisa laying here staring at the ceiling tiles so we can go home to parent the other 6?  What is the use in sleeping another night in a stiff recliner -- it's the plastic type which is great because it can be cleaned well, but when you're tossing and turning all night and getting a little sweaty and your shirt drifts up and your skin is sticking with every toss...really Lord?  What's the use?

Does it sound like I'm complaining?  I am complaining.  And what should we do when we find ourselves complaining?  We should look to the cross.  Actually, the cross is where things don't make sense.  The cross feels in so many ways useless.  It was so cruel.  So unfair.  So unjust.  Did a father -- a Heavenly Father -- really stand by while His Son was tortured to death?  Did He really in fact FORSAKE His own Son?  What was the use?!  I guess that's really the crux of the matter (pardon the pun).  What was the use?

Those of us living on this side of the cross in history have the amazing benefit of seeing what the use of the cross was -- namely, that the cross reconciled a chosen race of God's people to Himself when really, all hope had otherwise been lost.  And I benefit from the cross.  I will one day stand before my maker.  Will I continue complaining and say to Him, "Well, I really sucked it up while you stuck it to me with that baby you gave me.  I kept going to work, I didn't leave my wife.  I tried hard to balance things with the other kids.  It stunk, but I didn't turn my back on you.  And it didn't feel much like a blessing.  C'mon, let me in.  Isn't that enough for you?"  It isn't enough and that would be foolish.  But isn't that pretty much what my list of complaints 2 paragraphs above amounts to?  It's embarrassing really.

So there is a use to this.  The IV pump that is literally blasting in my ear while I type this has a purpose.  The pump says "occluded - patient side".  Maybe the 8th IV is coming.  Maybe more needles and pain for my little 3 month old is coming in the next half hour.  But if the crucifixion of Jesus bought me eternal life, I can be darn sure that this present suffering is preparing something big and it'll be good.

I hope my kids can learn this.  Carissa was worrying about them earlier today and I said, "you know, this will scar them."  But scars serve a purpose.  They are a sure sign of damage -- something bad happened, something painful.  But they are also a sign of healing.  You can look at your scar and say, "look here, I was wounded, but then I was healed.  This hurt once, but now it's fine.  This was bleeding, it was even infected, but now it's healthy tissue.  It's no longer festering.  It's strong and tough" (ask any surgeon how tough scar tissue is to get through).  And the great thing about scars is that after many, many years, they fade away, they're hard to find, never gone, but harder to find.

So, we're a wounded bunch right now.  The wounds are still open, still bleeding a bit, even festering with a little infection.  But we're on antibiotics and the scabs are starting to form.  Soon, the scabs will give way to the scar.  And we will know that just as Louisa's median sternotomy scarred over in roughly 6 weeks, our wounds will heal over as well.  And best of all, we remember that we serve a Savior who also carries scars from wounds that bought our freedom -- freedom from ourselves and this present suffering.  Kids, don't trade that for anything!  Don't look at the cross, those wounds, and turn away thinking it useless.  Louisa would have died were it not for her scars.  You would be dead were it not for His.    

...is a beautiful scar in April!

A wound in January...

Resurrection Sunday

So, this is by far the strangest Easter Sunday in our history.  The plan was to go to church for the first time as a family -- all 9 of us.  We've been trading every other Sunday going to church in the mornings to keep Louisa at home so as not to catch any bugs from all the coughers and sneezers in the pews.  The plan was foiled on Friday when it became apparent that Louisa wasn't merely filling her pants with poo, but with blood as well.  This is apparently a common complication for babies with HLHS.  I guess it has to do with the single ventricle and the shunt and whether enough blood flow gets to the gut.  If it doesn't, then damage occurs, blood can accumulate, and then the potential for  severe infection exists.  So, to be cautious, this bought us at least 3 days (but looking more like 5) back here with our friends at C S Mott where Lou is not allowed to eat and is getting IV antibiotics.

Hence, the bizarre Easter.  Below are the "family photos".  Thanks to the grandparents, aunts/uncles, and dear friends who sprang into action on Friday afternoon and took in the Minnaar orphans once again.  We love you guys and can't thank you enough for your sacrifice.

We did fly home for Easter service at URC.  It was such a blessing to worship our risen Savior with our URC family.  We had Olga's for Easter lunch in the car on the way back to the hospital.  Louisa played with the nurses and did just fine while we were away.

Christ the Lord is risen today.  Alleluia!

She doesn't look sick enough to be in the hospital, praise the Lord!  And if there's a bright spot to not being able to eat, it's that she gets a break from her NG tube!  Our almost 3 month old is such a saint, she even fasts for Easter!

Nothing to eat for 55 hours and still smiling.  This girls is tough.  Or nuts.  Probably both.  

The big "little girls" got to go to the lake with Grammi and Grampa for the weekend and Easter dinner at Melanie and AC's in Holland!

Easter iceberg hunt on Lake MI with Robert and Mieke.  Who needs eggs?

Noah and Natalie got to spend Easter with their friends the Beals and Vanderweys.  Probably the best Easter on record for them!  Noah, is that really what you wore to church on Easter Sunday?  Please tell me you changed prior to the photo...

And the boys got to go to church with Grammi and Bupha and Aunt Molly and (almost) Uncle Joey.  And it looks like Grammi of course made time for an Easter craft.  It looks great D!

Egg hunt with cuzzies Judah and Skylah!

Gotcha Day

Happy Gotcha Day boys!!

It was a year ago today that we officially made these two crazies Minnaars!  Our lives have certainly been consumed by their baby sister these days and in fact we're very bummed to have to postpone our celebration until we can come home from her current hospital stay.  But, where would we be without these two?  I have to be honest and say that our house would be quieter.  It would be more intact.  I wouldn't have screwed the windows shut in Kelvin's bedroom.  There'd be less bickering, perhaps less tears from the little girls.  But, would all those things make us better off?  Nah.  We're madly in love with these boys.  Even more than that, I'm in love with what the Lord is doing in them, through them, and because of them for all of us in our family.  We're learning about loving even when it's hard.  We're learning that love isn't always neat and tidy and fun.  Love is a decision that you make.  It's a commitment.  And it's more than just a commitment to endure.  It's a commitment to cherish.  And cherishing means enjoying and sacrificing and honoring and pleasing, even when you aren't getting something (at least immediately) in return.  In many ways, our commitment to our boys is like a marriage commitment.  We've made a decision to love these two even though there isn't a biological bond.  We entered into a covenant with these boys and we've promised to be their mom and dad forever.  We've promised to stay their parents for better or for worse (and there are days when it is just plain worse!).  We'll love them in sickness and health.  We'll love them until death do us part.  And, like in marriage, we've learned from these boys that that committed type of love has to be rooted in something.  It needs an anchor to hold it.  Otherwise, your self-centered, self-referential way of looking at the world will lead you to say that you deserve something more from these boys that you feel you've sacrificed so much for.  You can be tricked into thinking that this adoption thing was supposed to be all fun.  You could be duped into thinking that you had all the parenting skills to make this thing work.  But it needs some glue.  We're learning in a deeper way that the only lasting glue/anchor/root is our Lord Jesus Christ.  I read this week from the pastor's blog what the meaning of Maundy Thursday is during Holy Week.  It's the new "mandate" that Christ made to His disciples -- “A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another” (John 13:34).  It's that "just as I have loved you" part.  Crap.  You mean, Jesus, that I'm supposed to literally lay down my life for these boys even though they've done nothing to deserve it today?  I know the answer is yes.  It's yes today and tomorrow and forever.  That's the love I'm called to give them and that's the love they need.  The love of Christ.  So rich, so free.  But wouldn't it take the strength of God Himself to pull that off?  Exactly.  And thanks be to God for the gift of the Holy Spirit who enables us to love as Jesus loved.  It's the only lasting kind of love.  

I know this is the right way for my family.  And it's made me love all my kids more fully.  And I hope it's made me love my wife more precisely.  Thank you boys for all you've taught us, what a gift you are to us.  We love you dearly and will love you forever.  For as long as the Lord gives me strength, I will shepherd you in the way you should go and pray you do not stray far from it.  You've left a mark on our home (literally a few times!) and it's one I wouldn't trade for anything else.