Home again, Home again

This pretty baby lives at home now!

So we have been home for almost a week now (since last Monday).  Praise the Lord!  It is a beautiful thing, but it is also a tad overwhelming.  Time for Carissa to do a little crazy writing.  This past week kinda felt like someone took away the special doctors and nurses that checked on her around the clock, left me in charge with all the meds during the day, added a crazy feeding pump and an IV pole, and threw 6 extra kids into the mix who really want attention from their parents.  Louisa has lived at Mott for more of her life than at home, so even though she is 4 1/2 months old, I'm still not quite sure how to make this all work here.  Here's a summary of her first 4 months:

• Mott for the first 4 weeks of life including... open heart surgery, cardiac arrest, 4 days of ECMO, intraventricular hemorrhage, chylothorax
• Home for 2 weeks (checking weight and O2 saturation daily, recording every cc she ingested by mouth and feeding tube, and reporting back to the team at Mott)
• Back to Mott for 2 days with an upper respiratory infection
• Home for 6 weeks 
• Mott for 7 weeks, 3 days including... GI bleeding, Aortic coarctation, Transhepatic picc line migrated out of her liver (no one had ever seen this happen before) and filled her belly with a dangerous half liter of TPN and lipids, another open heart surgery that was moved up a month from the original schedule, 3 days of horrific non-stop screaming and back arching that no one could explain, a subdural hemorrhage and 3 strokes, 2 episodes of weird eye nystagmus, a dvt in her leg, and more GI bleeding resulting in us going home on continuous feeds with a pump, IV pole and $50/can special elemental formula

My family is back together again, all sleeping under the same roof and that is amazing.  Yet here I am, still struggling with fear about the future for Louisa (I keep picturing myself as Sally Field in "Steel Magnolias" arguing with my daughter about her having a baby), feeling like I deserve some rest after all that we've been through, frustration over the un-potty trained kid and the people who are using Lou's feeding tube as a limbo pole or high jump marker, and unmet expectations that everything would be better after her hemi-fontan operation... why did we come home on more meds and a more complicated feeding situation than after the Norwood?  I thought I was going to have a normal baby and a normal summer after this surgery!!!!  And then I feel guilty and then I feel crazy again...

Of course, a little Spurgeon comes in handy at times like these...

The Lord has done great things for us; we are glad.  -Psalm 126:3

"Some Christians are sadly prone to look on the dark side of everything, and to dwell more upon what they have gone through than upon what God has done for them... But a Christian whose soul is in a healthy state will come forward joyously and say, 'I will not speak about myself, but to the honor of my God.  He has brought me up out of a horrible pit and out of the miry clay and set my feet upon a rock and established my goings; and He has put a new song in my mouth, even praise to our God.  The Lord has done great things for me - I am glad.'...  In looking back, it would be wrong to deny that we have been in the Slough of Despond and have crept along the Valley of Humiliation, but it would be equally wicked to forget that we have been through them safely and profitably; we have not remained in them, thanks to our Almighty Helper and Leader, who has 'brought us out to a place of abundance.'  The deeper our troubles, the louder our thanks to God, who has led us through them all and preserved us until today.  Our griefs cannot spoil the melody of our praise; we consider them to be the 'bass line' of our life's song, 'The Lord has done great things for us; we are glad.'"     -Morning and Evening 

Nick told me at one of my low points this past week that my problem was I was thinking I needed Jesus and... Jesus and a totally fixed baby, or Jesus and just a short break from this stress, or Jesus and kids that welcomed us home and started picking up after themselves and asking how they could help every few hours.  Right now I have to focus on the fact that I have Jesus period. And the eternal weight of glory is getting heavier and more beautiful to imagine.  And the other thing I've realized is that He gives us glimpses of that glory even in the midst of the long and hard.  Sometimes it's just a moment, like a few seconds at the dinner table when we're all laughing together at something ridiculous that Kelvin said, or seeing 2 of my girls skipping to the mailbox together, or Francie running into the house squealing that the baby birds are hatching RIGHT THIS SECOND out of their eggs, or walking through the doors of my church this morning with Louisa Joy for the first time in her life, or laying my head down on my own pillow in my own bed!  And these are little tiny shadows of the endless joy we will experience when we are done fighting this long, hard battle.  Thank you Lord.

All 7 rascals finally back on the couch together

The baby robins hatching right in front of our eyes - a little gross, but pretty amazing