Guest Blogger: Carissa

Can you be a guest blogger on a blog you started?  I haven't really been able to string two coherent thoughts together in the past month or so, but I wanted to try and get a few things out.

We are home.  With our baby.  I still can't believe that I can write those words.  This morning we got to snuggle with Louisa in our own bed with one little girl on each side of her holding her hands and stroking her hair and just looking at her.  Will I ever go a day without crying again?  This morning they were some happy tears.  

We left home the night before Louisa's birth a little over 4 weeks ago and stayed at the Holiday Inn Express in Ann Arbor as we had to be at the hospital early Tuesday morning for the C-section.  It feels like a lifetime ago now.  Those memories are already so fuzzy in my head.  We had no idea what was awaiting our family.  I've looked at the pictures a few times and it doesn't seem real. On Friday, January 24, we came very close to losing our little girl.  They finally "stabilized" her on ECMO and we got to see her.  There was nothing "little girl" about her.  She was just an extension of those machines.  There were only a couple places we could even touch her.  And those machines were beeping constantly.  There were 2-3 caregivers at her bedside 24 hours a day for the 4 longest days of my life.  It felt like all we could do was watch the clock helplessly and pray for the hours to pass without another nightmare.  I was afraid of her -- afraid to look at her, afraid to touch her, afraid to let myself love her because I was so terrified of losing her.  It was easier to think of her as part of the machines and not really my baby.  Now she is 4 weeks old and I love her so much.  It's still scary to love her, but she is a gift in a different way than I have ever known with my other kids.  Every time I look at her I am amazed that she is alive.  Maybe that amazement will wear off at some point, but it hasn't yet.  What a merciful and gracious God we serve!  I pleaded for mercy and He granted it.  The Lord literally spared her from death and every day that we have with her is a miracle.  I was reminded of this passage from one of my favorite books, Stepping Heavenward by Elizabeth Prentiss:  "What should we do without her gentle, loving presence, whose frailty calls forth our tenderest affections and whose sweet face makes sunshine in the shadiest places!  What this child is to me I cannot tell.  And yet, if the skillful and kind Gardener should house this delicate plant before frosts come, should I dare to complain?"  That is my prayer and at various times in this trial I have felt deep fear that I am not truly willing to lay her down on the alter and rejoice no matter what the Lord calls me to do.  One of our dear elders wrote to me during one of those times when I feared I wouldn't be faithful enough in the darkness: "Take courage that His grace is sufficient and His love is sufficient! Even if you doubt, even if you are terrified, even if you are too afraid to move, the Lord will prove faithful. Your faith doesn't have to have any special quality for Him to prove faithful. Hallelujah that this outcome depends not on our faith but on the object of our faith. And just like Stephen and the martyrs God will give the grace that is needed for each hour and minute."  The thankfulness I have felt for the encouragement and wisdom from beloved brothers and sisters at key times is hard to describe.  

It'll be a new normal.  That's what everyone in the hospital kept saying.  Things aren't going to be the same.  When we got to our infant cpr class at the hospital, the teacher asked if anyone had a cardiac baby who had the Norwood surgery... when we said yes, she gave us that look like, "oh, so you guys really need to know this."  And then later she was telling one of the other moms that a baby's heart doesn't usually just stop, and I couldn't help blurting out, "well, ours already did!"  And she gave me that look again, "well, yeah, you guys have a hypoplast, that's different."  So I get the shakes again for a minute and then move on... right, new normal.  We don't know if there will be long-term issues with the cardiac arrest and brain bleed.  We do know her left ventricle will never work.  She'll always live with half a heart.  The next 6 months while we go through this "interstage" period, she is at risk for sudden death. We have little cards that we're supposed to carry in our wallets that say that and they also explain to emergency personnel that her oxygen saturation should be between 75 and 85% so they don't treat her like a normal kid and over-oxygenate her which could cause heart failure.  We don't know if she'll be able to have babies, we don't know if her half a heart will start to get tired in her 20's or 30's...  But now I totally get why when I tried to ask the cardiologist some of those long-term prognosis questions at one of the fetal echo appointments during pregnancy, he looked at me with compassion and said, "We've got a lot to get through before that.  Let's take it one step at a time."  So for now we have to figure out her care at home with the other kids in the mix.  Nick was home today and my sister came to help and this would really be no problem if there were 3 adults here at all times!!  I have felt inadequate before in my life, but this is a new level of inadequacy.  Until her 2nd surgery we have to feed her every 3 hours around the clock and for now we have to try feeding her with a bottle for 10-20 minutes and then finish the rest of the feeding by tube.  And she has meds 3 times a day.  And I have to pump.  And we have to weigh her and check her oxygen saturation levels and fill out logs to report back to her care team at U of M.  We have visiting nurses coming, seemingly endless phone calls with the insurance people and appointments back in Ann Arbor every week for a time.  And there are 6 other kids that would really like some attention after their parents were gone for 4 weeks!  And a couple of them have some lingering attachment issues and did I mention their parents left them for 4 weeks?!  And then all of a sudden she seems to be breathing too fast and she gets a little dusky and my fears surface again and I forget what I was supposed to be doing, and I start to feel lightheaded and shaky and my mind slips back to that Friday... BUT!  He is good. We know on a deeper level that the Lord has numbered all our days and that He is so good. On the worst day when it felt like everything in the room turned to jello and I couldn't think or stand up, the Lord was still faithful.  The anchor held.  And I know without a shadow of a doubt that it always will, no matter what happens with our sweet girl or with anything else for that matter.  Nick has said to me an endless number of times in the past 4 weeks, "we're going to be ok."  And I know it's true when I remember to keep my eyes fixed on the source of my secure and eternal joy.  Praise the Lord that he allowed me to see that and long for it in a new way.

Hebrews 6:18b-20, "We who have fled for refuge might have strong encouragement to hold fast to the hope set before us.  We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain, where Jesus has gone as a forerunner on our behalf, having become a high priest forever after the order of Melchizedek."  

"So the anchor of our soul is the absolutely certain hope of eternal joy with God which Jesus has secured by his priestly work in the holy of holies.  ...The anchor is bound in heaven and secured in my soul.  The rope does not dangle in my face and lie limp across the deck of my soul.  God, by his Holy Spirit, takes up the rope and ties it to the little ship of my weak and vulnerable soul with unbreakable, sovereign covenant love.  This was promised in the new covenant and purchased by the blood of Jesus."  -Piper