Louisa update 3-28-14

This girl has got some cheeks on her, but she's in the 2nd percentile for height and weight!

Louisa's doing well overall.  I frequently remind myself and Carissa if we're discouraged about something that at least we're home with our baby and she's not on life support!  That being said, we'd still love prayers for her continued health and progress.

Her primary goals right now are to gain weight and wean off her tube feedings before the next surgery this summer.  Both of these goals are linked to her eating.  She had been on the special formula for 6 weeks and we converted her to fortified breast milk about 2 weeks ago.  They had given us hope that a lot of babies in her situation will really "take off" once they switch to the breast milk and no longer require tube feedings.  (Louisa starts each feeding with the bottle and when she tires out or won't take anymore, we give the rest through her tube).  However, it seems that she actually is going backwards since the change and is taking less by mouth and more by tube.  She's also fighting the feedings more than she used to and they are becoming more stressful for us.  We aren't sure the cause -- if it's preference of milk, getting used to the new breast milk, gas, heart failure.  It's hard to have heart failure on that list!  Her weight gain has also been slower than they'd hoped and they've made some adjustments with her medicines this past week hoping that might help.  She's just been more fussy lately and fussy for any baby (let alone one where fussiness can be a sign of heart failure) means more stress for parents.  We know she's still going to do the normal baby stuff like have fussy days or weeks, but this one just gets us more anxious.  

She has been sleeping really well at night and for that we are praising the Lord!  They ok'd cutting out her 2 AM feeding and just doing more during the day, so that means we are getting a stretch of sleep from about 12 AM to 5 AM which is pretty good for new babies!  We're also growing in our confidence to venture out more and she seems pretty flexible with that so far and has stayed healthy despite some runny noses and little coughs that the rest of the kids have.  

Louisa is two months old!

Clearly hazy

I've been thinking again.  It's hard not to think these days.  But life has a different hue to it.  There's some sort of haze all around.  They say when you get macular degeneration you see a halo around every light you look at.  I don't have macular degeneration, but it seems like a good analogy for how life feels.  Everything has a new fuzziness.  Even the normal things -- trips to the grocery store, a favorite song, watching an MSU basketball game, going to church -- they feel different.  I know they aren't different, it's me that's different now.  But I can't quite put my finger on it.  I'm not sure what it is exactly.  Things are just different.  Of course, the different will slowly become all I know again and this will become my new vantage point.  Perhaps people with macular degeneration can't remember what it was like to see lights without the halos.  Perhaps eventually they get used to it.  It's like the story I heard about the USA bobsled guy from the olympics.  He had an eye condition and when he had it corrected, he actually had a harder time controlling his sled because he wasn't used to the clarity.  He had to wear special fogged up glasses in order to stay on course.

Stay on course.  That's what I'm trying to do right now.  Stay on course.  Carissa has been praying Psalm 119:133 a lot, "Keep steady my steps according to your promise..."  The course is important.  The Lord has every step plotted out for me and it makes complete sense to Him.  He knows the end from the beginning and He knows the purpose for it all.  He knows my first and last breath.  He knows Louisa's first and last heartbeat (and the few moments He hit the pause button!).  It makes sense to him that her heart is messed up.  This fog I'm living in right now makes sense.  Check this out:

The mountain peak is free of fog and when you're in the very depth of the valley there is a paucity of fog.  It's when you're in the middle that things are foggy.  The clarity is at the heights AND in the depths.

I was thinking about this in relation to my experience with Louisa 2 months ago.  It was a deep and dark place.  I'm not sure I've been in a deeper valley.  But there was a clarity there.  There was a simplicity in the midst of the chaos.  There was a rest coincident with the battle.  There was a peace mingled in with the tumult.  Our job was actually quite simple.  We were to hold vigil at the bedside.  Our role was to sit and pray and plead and wait.  It was hard, but it was simple and in that sense it was actually quite easy.  Carissa and I often speak about that month in Ann Arbor at the bedside and actually miss it.  I know that sounds crazy.  I think you know what I mean.  I don't ever want Louisa to be knocking on death's door again.  I don't want to know that nauseous, dizzy feeling again.  But, there is something about that darkness that is almost comforting in retrospect.  I think I know what it is.  It's the fact that we were actually below the fog.  It was clear there.  Where it's darkest, you can more easily see the Light.  Jesus said, "I am the light of the world.  Whoever follows me will not walk in darkness." (John 8:12)

So, it's in the darkest places that the true light of Christ is the most clear.  The flip side are those mountain peaks of life.  These are moments when life couldn't be better.  These are the big life events that you dream of -- the weddings and births of children or the big vacations.  And more simply, those hot summer nights sitting on your back porch listening to the tree frogs chirp while sipping iced tea with your beautiful wife at your side and your children quietly putting themselves to bed and the Tigers are on in the living room and the're about to sweep the Yankees.  Those moments are the amazing ones when you feel the Lord's smiling presence and you pray that it will never end.  There's a lot of clarity there too.  You feel like you can see for miles and it looks good.  The view is grand and you can sense your smallness and the bigness of the God you serve and you know that's right -- that you should feel small and He should be big.  It's crystal clear there in that moment.

But, you know those moments come few and far between.  And you pray those dark valleys will come few and far between too.  So what about now?  Now I'm somewhere in the middle.  In the foggy part.  In the in-between.  The haze is upon me.  The haze makes the brilliance of the light in the darkness more dull, but there isn't the breathtaking vista at the summit either.  It's just foggy and fuzzy and hazy.  And there's a new heaviness to this fog that wasn't there before.  This is where most of life is lived now.  Today was an ordinary day, but with that new haze I'm getting used to.  I went to work.  I saw a lot of 40-60 year olds with high blood pressure, high cholesterol, and diabetes.  I came home and we took the kids to youth fellowship.  We came home and the big kids are doing homework, Carissa is feeding Louisa.  Nothing particularly good or bad happened today.  It wasn't a dark day.  It wasn't an amazing day.  It was a day in the ordinary haze of life.  I sighed a few times today.  I laughed a few times.  There weren't any tears.  There wasn't any exuberance either. I'll probably forget most of what happened today in just a few weeks.  Nothing is going to stick out in my mind about this day.  And most days are like this.

So, what do we do with these days?  What is the faithful thing to do?  This would all sound quite depressing except for the part I was talking about at the beginning -- that part about the Lord plotting out a course for you and me.  There must be something He wants us to do in this foggy part of the course.  I think I know what we're supposed to do with these foggy days.  We're supposed to prepare.  We have to expect that there are some more dark valleys coming.  Louisa has 2 more surgeries.  Our parents won't live forever, one of us in this marriage will likely outlive the other.  It will be hard to say goodbye.  We might have to deal with a wayward child for a time.  There's 7 of them, it could happen.  They will probably experience some deep loss in their lives.  Louisa might have heart failure.  It's possible we'll outlive her.  That would be dark.

How do you prepare for these things?  You have to take days like today and do a couple things:

1.  Enjoy today.  Louisa lived today.  Carissa is still beautiful today and she smiled when I came home from work.  There were no major tantrums from the boys today.  Kelvin didn't poop his pants today.  Some snow melted today!  No car accidents today.  I didn't experience any physical pain today.  I saw some friends at church tonight.  They encouraged me with their words.  I saw Kelvin's 3 year-old friend, Bennet, and he said, "I'm awesome!  I punch monsters in their stomach!"  (3 year-olds are funny).  The mail was only junk, no bills today.  No power outages today.  Good clean water out of all our faucets today.  Actually, today looks pretty good after all.

2.  Remember the Sabbath day and keep it holy (4th of the 10 Commandments).  The Heidelberg Catechism says:

LORD’S DAY 38
103 Q. What is God’s will for you
               in the fourth commandment?
 A. First,
      that the gospel ministry and education for it be maintained,
      and that, especially on the festive day of rest,
      I diligently attend the assembly of God’s people
           to learn what God’s Word teaches,
           to participate in the sacraments,
           to pray to God publicly,
           and to bring Christian offerings for the poor.

 Second,
      that every day of my life
      I rest from my evil ways,
      let the Lord work in me through his Spirit,
      and so begin in this life
      the eternal Sabbath.

I love that part about the gospel ministry and the education for it.  That's what we're supposed to be doing in these normal, mundane days -- maintaining an education in the gospel.  Every day is a day to remember the gospel.  We remember by reading the gospel and praying and talking to friends and family who remind us of the gospel and telling our wives to remember the gospel and teaching our children the amazing grace of the gospel message.  And we also make sure to go to church on that "festive day of rest".  I love that -- "festive rest".  Isn't that what you want?  Isn't that what you long for?  Festive rest!  Are you going to church to hear God's Word, take the sacraments, pray with the brotherhood of believers, and give your offering to the poor?  If you're not, you should! And if your Sundays don't feel like "festive rest", figure out why.

So, that's how to prepare for the darkness in the coming valleys.  You must know the gospel.  The gospel is simply (though not exhaustively) that your life is a mess (you know that intuitively), you are distant from God because of the sin in your heart that wants to control Him rather then letting Him run the universe as He sees fit.  He's Holy and offended by that attitude of yours so you won't be able to stand in rebellion for too long.  In the end, he will judge you.  But don't worry, he has a solution.  He sent His Son Jesus to take the punishment you deserve for that sin and Jesus lived a perfect life and was obedient even unto death to take that punishment.  And the best news is that Jesus didn't stay dead, He rose from the dead ("on Easter Sunday" as Maizy always adds at our house!).  And in so doing, he conquered sin and death on your behalf.  And if you are in Christ, then you too are raised to newness of life.  This is good news!  This is the gospel.  And if you remind yourself of this every day, then the darkness is not so dark and you recognize the beauty of the Light shining in that darkness.  And one day, when you reach the summit of your life and survey the breathtaking panorama and know the peace that surpasses all understanding and feel that feeling that all is right with the world, you'll know it's right because God has made it right by His gospel of grace for you and your wife, and your little ones.  Even the little ones with heart problems.  Whether she makes it or not, the gospel is true, the Light has dawned, I will reach my summit of eternal rest.  My festive Sabbath rest is coming.  Even if today was a bit hazy.  

Goodbye Enfaport!

Switching to the good stuff

Today was our last day of the 6 week course of Enfaport (or "Enfapuke" as Nick calls it... it comes back up looking like peanut butter - not pretty) as a result of Louisa's chylothorax.  I got out the first batch of pumped milk to thaw and saw the date on the bottles.  I was immediately back in that pumping room at the hospital crying and pleading with the Lord that I would be able to use that milk someday while Louisa was a few rooms away on full life support.  And here we are at home, thawing the milk to give to her!  Amazing.  I am praising the Lord again for her precious life.    

Jungle Book

Another successful HPA play with lots of fun and laughs for our Natti girl...

The cast

Natti the monkey with her itchy brown hat and her girls

Frank the Tank is 7

Our sweet Francesca Eleanor is 7 today!

We love her freckles, joyful spirit, and her tight hugs around the neck.

Of course we had blinna for birthday lunch after church.

Legos, a new big girl Bible, a special pillow from Natti, and Frozen coming in the mail the day it comes out!
(Her goal is to copy the whole Bible by hand... Crazy Maizy only wants to copy the book of Job.)

Mom isn't quite back to baking yet, so we got some special cupcakes from Sam's :)

With her baby sister

A Couple Victories

The nurses at Mott wear T-shirts that say, "Hail to the little victors".  You know the reference.  It's that silly little song the Wolverines sing to celebrate their teams' accomplishments.  It's true the Wolverines might have a superior basketball team this season than my classically inconsistent Spartans.  But the T-shirts are celebrating all the little ones who have left Mott as victors.  Victors over their diseases, their conditions, their fears, their battles.  It's such a different place, Mott.  There aren't little things going on there.  The stories we hear from other parents there aren't simple ones.  It seems everyone there is fighting a big battle. 

But I was thinking again today about "little victories".  We have little victories inside of the overall big victory we are hoping for.  Sometimes, something small happens and we forget how big it really is.  The last 48 hours for instance.  Louisa was fighting a "little" cold.  But little colds for someone who runs oxygen levels in the 70s-80s are a big deal.  We noticed an overnight drop in her saturation level and alerted the cardiology team.  They felt it was best to bring Louisa in to observe her.  If we felt she was stable enough, they wanted us to bring her to Mott's ER.  Otherwise, we should go to Sparrow and they would have her transferred by ambulance.  That seemed excessive and Mott is only an hour away -- a little victory.  So we made the drive to Ann Arbor and every few mile markers I'd ask Carissa, "Still breathing, right?"

"Yep."

"Still breathing, right?"

"Uh huh.  It's kind of nice she has that NG tube, you can see it move in and out when she breathes." The NG tube is now our friend -- a little victory.  We made it to the ER and Louisa breathed the whole way -- a little victory.  

We walked through the doors and the lady at the desk called out to us, "Name?  Are you Minnaar?"

"Yeah, Louisa Minnaar," I replied.  

"We have a resuscitation room ready for you, is she breathing ok?"  

"Whoa, whoa!  No, no she's not that bad.  We're just here to get her checked out."

"Ok, the doctors called and told us you were coming, we always get a resuscitation room ready for hypoplasts in respiratory distress."  We didn't need the resuscitation room -- a little victory.  

We were admitted overnight for observation and she did great.  She maintained her saturation levels and had a normal chest xray and impressed the doctors and nurses.  We saw our favorite nurses and doctors and even the really pleasant and friendly guy who would clean our room.  They all seemed happy to see us, but jokingly scolded us for coming back so soon!  Doctors and nurses joking with you -- a little victory.  They don't joke when things are going bad.  They did let us go home last night.  We walked out and called to the nurses, "see you later!"  We will see them later, for sure.  But it's feeling normal and almost comfortable there.  Normal, comfortable -- that's a little victory.  I said to Carissa, "You know, it's a victory every time the three of us walk out these doors." 

We grabbed some dinner and got home at about 8:30 last night -- in time to re-pack the bags and swap out the dirty feeding supplies for clean ones.  We were in bed by 10 because we had to get up early to head back to Ann Arbor for our neurosurgery appointment.  Figuring out what you'll need for NG feedings while on the road -- a little victory.  We did forget to bring hot water to warm the bottle so I had to sacrifice my Tim Horton's coffee for the task, but it warmed it up just fine.  Improvisation -- yet another little victory.

We had an uneventful ultrasound from a familiar tech with a Russian accent.  She told us about a guy that works in the radiology department with HLHS.  "He fishes and hunts and wake boards, and is totally normal really.  I mean I just saw a picture of him with a big deer.  He's like 30 or something."  Happy, healthy, 30-somethings with HLHS stories are really encouraging -- a little victory.

Then we met with the neurosurgeon.  He was very pleasant.  The visit was really short, maybe 3 minutes altogether.  Very short doctor appointments are a good sign -- a little victory.  He said the brain bleed looks like it's pretty much completely reabsorbed and there is no sign of any hydrocephalus (excess fluid).  Hydrocephalus is the biggest immediate complication of the bleed she had and he said if it was going to happen, it would have by now.  He'll order one more ultrasound in 4 months just to be sure, but if we want, he won't be offended if we cancel it -- that's how sure he is that this no longer is an issue.  Brain bleeds that are no longer an issue -- a little victory.  

So we walked out the doors of Mott once again this morning with a little more spring in our step.  But wait a minute.  We started to reminisce just a bit about that fateful Friday when things went so dreadfully wrong for Louisa.  We still can't dwell in that room of memories in our minds for too long, but we did just long enough to remember that the "little victory" of the resolved brain bleed was actually a huge victory -- astronomical really -- compared to what was happening when we got the news of the bleed.  

She had arrested and we were sitting in that tiny consultation room off the ICU hallway (We still pass by that room sometimes and I shudder when I see it).  The doctor and fellow and our nurse came in with the news.  She had arrested, was on ECMO, but we were waiting to hear about the brain.  There was a bleed.  Dr. Z said it was a pretty good sized bleed.  This was a major complication because ECMO requires the blood to be thinned and you really can't thin it when there's bleeding on the brain.  He said we couldn't know for sure what the ultimate outcome would be with this bleed and only time will tell if it expands and how much of the brain could be effected.  He told us that it's only a 50% chance that kids who go on ECMO will survive to discharge and this bleed was making that even less likely.  

Essentially, what we heard him saying was that we were going to lose her.  This bleed proved it.  They even gave us the option of stopping everything and just saying goodbye.  I'm glad we didn't take that option because today came.  Today came and that nice neurosurgeon said the bleed has resolved and that she looks great.  Here's the picture below of Louisa getting her scan today from that nice Russian tech.  She looks great.  And those pictures on the screen are of a normal brain (well, as normal as a Minnaar brain can be).  Normal brain scan -- unbelievably huge victory, miracle type victory!  

pretty comfortable during her head ultrasound

So, those "Hail to the little victors" T-shirts mean something to us.  In fact, you might even see my wife sporting one.  It was hard for me to allow it.  There is a block M on it, but I made sure she got a pink one.  I still can't do any maize and blue.  And don't worry, I've seen Louisa's blood, it's definitely got a green tint to it -- my little Spartan victor.

Mott take 2...

Back at Mott.  Louisa was admitted for "a couple days" this evening.  She had been dealing with a stuffy nose over the weekend and this morning it appeared to be moving more into her chest.  We noticed her color change, more labored breathing, and her oxygen levels dropped about 10 percentage points.  We had called the cardiology team and they really felt it was best for her to be seen here.  They did a chest X-ray that looks good.  She is still stable, just on the borderline of needing extra help and they'd rather she be here than at home in the event that she needs that help.  We also would rather need a little help now than emergency help at home later!

We're feeling glad we're here in a "safe" place, though weariness comes easily at the sights and sounds of these familiar surroundings.  We're frustrated to be back so soon, but they did warn us this was common.  Please pray for our kids.  They were a bit stressed at our departure and likely worried that another month will go by without mom and dad.  It was just beginning to feel a bit more normal for them I think.  Hopefully this really will only be a couple precautionary days.  Thanks for the prayers.

Seriously Lou?  Not again...

Louisa is one month old!

2/21/14 -- one month old!

Louisa Joy is a month old and we have survived being at home for a week and a half!  We had our first appointment back at Mott this week to see the Nurse Practitioner in charge of the inter-stage monitoring program (where they keep track of her daily O2 sats, weight, and meds/feedings until her stage 2 surgery).  She said everything looks great so far!  Praise the Lord, still a miracle everyday.

I have been thinking and praying about the Lord's strength for each day when I feel weak...

Encouragements:

Verse 3 of Great Is Thy Faithfulness --

         Pardon for sin and a peace that endureth,

         Thine own dear presence to cheer and to guide;

         Strength for today and bright hope for tomorrow,

         Blessings all mine, with ten thousand beside.

     

My dear Aunt Judy reminded me of Gideon this morning --

"We first meet Gideon in Judges 6, hiding in the winepress as he is threshing wheat, because of his fear of the Midianites. The Lord appears to Gideon and calls him a mighty man of valor. Gideon doesn't feel real mighty and even questions what the Lord has been up to and why He has forsaken them. The Lord tells Gideon that He will use him to fight the Midianites and that Gideon should go in this might of his and that the Lord sends him. Gideon tells the Lord that he is the weakest in his father's house and the Lord reminds him that He goes with him! Later in Chapter 6, verse 34, it says that the Spirit clothed Gideon. I love that! Even in Gideon's weakness, he is clothed by the Spirit to do what he is called by the Lord to do. In the verses following, 6: 36-40, Gideon continues to ask the Lord for reassurance that the Lord is with him and plans to use him and each time the Lord patiently gives Gideon the signs he needs to go forward. In chapter 7, we see Gideon going forward, specifically led by the Lord, clothed by the Spirit. Gideon was weak, but the Lord was strong!"

And of course some Spurgeon that I have reread 10 times in the past week --

His bow remained unmoved; his arms were made agile by the hands of the Mighty One of Jacob.        Genesis 49:24

"The strength that God gives to His Josephs is real strength; it is not a boasted valor; a fiction, a thing of which men talk but which ends in smoke; it is true -- divine strength.  Why does Joseph stand against temptation?  Because God enables him.  There is nothing that we can do without the power of God.  All true strength comes from "the Mighty One of Jacob."  Notice in what a blessedly familiar way God gives this strength to Joseph -- "His arms were made agile by the hands of the Mighty One of Jacob."  God is represented as putting His hands on Joseph's hands, placing His arms on Joseph's arms.  Just as a father teaches his children, so the Lord teaches them that fear Him.  He puts His arms upon them.  Marvelous condescension!  God Almighty, Eternal, Omnipotent, stoops from His throne and lays His hand upon the child's hand, stretching His arm upon the arm of Joseph, that he may be made strong!  This strength was also covenant strength, for it is ascribed to "the Mighty One of Jacob."  Now, wherever you read of the God of Jacob in the Bible, you should remember the covenant with Jacob.  Christians love to think of God's covenant.  All the power, all the grace, all the blessings, all the mercies, all the comforts, all the things we have flow to us from the fountainhead, through the covenant.  If there were no covenant, then we should fail indeed; for all grace proceeds from it, as light and heat from the sun.  No angels ascend or descend except by the ladder that Jacob saw, at the top of which stood a covenant God.  Christian, it may be that the archers have sorely grieved you and shot at you and wounded you, but still your bow remains unmoved.  Be sure, then, to ascribe all the glory to Jacob's God."