Normal is NOT boring - 7 month update

I still get a sick feeling in my stomach sometimes over this little girl and our new life.  Weird things trigger it and it can hit suddenly sometimes.  Just now I had it again.  Today is a Saturday in September and it's a little cool.  It feels like fall is in the air and I was thinking how it won't be long and the snow will begin to fly.  And then my next thought was the memory of watching the snow storms of last winter from the Bay in the PCTU at Mott.  And then I felt my stomach sour up a bit. Those were such hard days.  

The view from our room at Mott, January 31, 2014

Carissa had one of these this week when she took Natalie to the mall to buy some clothes (she keeps growing out of her clothes every couple months!).  She left Louisa and the other kids at home with her sister Molly.  Apparently Molly called while they were still at the mall, but the call dropped and then Molly didn't pick up when Carissa called back.  Carissa was sure Louisa was arresting. Images like this are the ones that come screaming into your consciousness from even the smallest triggers:

Louisa on ECMO after her arrest -- panic inducing memories.

She went into a full blown panic attack right there in the Old Navy dressing room.  Finally she got a hold of Molly, and of course it was something stupid like, "where's the new laundry detergent?"  But, these kind of things still happen -- sometimes brief little stomach sourings, and sometimes full blown panic.  Sometimes it's painful memories.  Sometimes it's fear about the future.  And the present is tough too -- the meds, the feeds, the boys, school work, chores, friends, family...  it's a tough spot.  But it's the right spot.  God has put us here.  He desires this for us that we can understand Him better.  

A long time ago, I wrote a blog about anxiety and was thinking about Jesus on the night before his death when He was in the garden.  His past must have been tough, his present circumstances were intensely difficult, and he was facing a very painful future -- the cross.  But, now I'm thinking about that passage in Hebrews:

Hebrews 12:1-2 (ESV):

"Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us,  looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God."

That part I bolded is the part that hits me hardest.  I'm not saying my trial compares to the cross.  But I am saying to myself and my wife often that we have an eternal joy set before us and therefore we can endure any and all trials.  No one has promised us that Louisa will have a full and healthy life.  She's looking great right now and we're praising the Lord for that, but she still has to endure the Fontan surgery.  And our doctors say things like, "WHEN she develops post-Fontan complications..."  It's a WHEN, not an IF.  It's inevitable.  Of course we HOPE the complications will be of the smaller, more tolerable, more correctable nature.  Of course we HOPE they'll come decades from now.  Of course we HOPE they'll come up with great ways to handle them as medicine makes advancements.  But all those HOPES are just that -- they are HOPES (plural).  They are not our HOPE (singular).  Our HOPE is in the joy that is set before us BECAUSE Jesus endured the cross and paid our way to the Father.  Our HOPE is that he is preparing a place for us and that that place is not a place of panic attacks and sour stomachs.  It isn't a place of half-hearts and ECMO and post-Fontan complications and hepatic factors and AVMs and heart transplants and heart failure and pacemakers and pump assist devices.  It is a place of weighty glory.  

We get glimpses of it now.  For every sour stomach, there are many more moments of intense blessing.  This little girl continues to progress well and she brings us so much joy everyday.  We met with her cardiologist this week and she had an EKG and we made a plan to continue working on her feeding issues.  She still doesn't like to take any liquids from a bottle, so we're still stuck with the feeding tube.  The speech therapist we saw said there's no mechanical reason for it.  She said kids can develop these issues when they get "derailed" from that developmental skill and they sometimes just don't recover from it.  The great news is that this girl loves her solids so far!  From day one she began pounding down the rice cereal and soon we'll be advancing through the staged foods like any 7 month old would be!  She's just probably going to skip the bottle stage.  And we are also transitioning her back onto all the frozen breast milk from the million dollar Elecare formula.  Tomorrow she'll be on 100% breast milk for her daytime feeds and next week we'll begin switching over her night feeds.  And no bloody poop!  She really seems to be recovered well from that.  And then we'll start moving to mostly daytime feeding and being done with the feeding pump at night -- like a real baby!  That will be great.  We're getting her meds weaned down a bit too, to only twice a day.  When we left the hospital in June, she was getting 15 doses of 8 different medications each day.  Now we're down to 7 doses of 5 different meds a day!  And we were done with the Lovenox injections over a month ago.  She's even starting to sit up a bit on her own.  Actually, Dr. Z felt good enough to give us 4 months until her next appointment!  4 months is a long time (more than 50% of her life so far).  It really seems like we're coming out of the woods here.  

So, we are in a moving forward sort of phase and that feels good.  School is back in full swing again (after a pretty serious medical LOA!).  That feels normal.  I was able to do a small home improvement project and build a little room in the basement to keep all the school and craft stuff organized in.  That felt good.  Noah is back on the soccer field.  That's normal.  Kelvin is going to start preschool in 2 days.  We figured that was going to be good for everyone.  He's actually holding a hand-held solitaire game up to my ear as I'm typing this so I can hear how loud it beeps -- there's a limit to how much can get done around here when Kelvin is within a 5 mile radius.  So, I think preschool will prove to be a good idea.  The fall decorations are out (we just realized the Valentine's heart was on the front door for 7 months -- I figure it's fitting though for a heart family...).  We're starting to drink more hot tea instead of iced tea.  Football Saturdays are back (I even treated myself to a new flatscreen for the basement).  Youth fellowship is going again on Wednesday nights.  I can't believe I'm about to say this, but I think things are getting back to some kind of NORMAL.  

In so many ways it's a different normal and it will never be the same.  There's new fears, there's new intense memories, there's occasional panic attacks and sour stomachs.  But, then again, we're doing the NORMAL things that NORMAL people do again.  Our baby is starting to do the NORMAL things that NORMAL babies do.  Praise the Lord.  Our days are days of small things again.  O Lord, may we not despise these days.  We are so prone.  Thank you for taking us through the dark valleys so we could look on these cool football Saturdays that are riddled with tantrums, and messes, and endless clean-up, and discipline and see these days for what they are -- days of small things.  Blessed small things.  Normal things.   

Our sweet 7 month old

Louisa'a favorite pediatric cardiologist

Working the 4 limb blood pressure

A visit with our primary ICU nurse (we brought her a Spartan cookie cake for her birthday because we're so nice)

Cutest little Spartan EVER!

All of our junior Spartans - brainwashed since birth

Showing off her zipper

First trip to Lake Michigan