5 years ago Evan can home so it feels like a good time to post the third part of the story.
There are so many things I love about home. I’ve had a few of them now and by far the best things about them are the people that have lived in them with me. My family growing up, my roommates in college, my husband; they are the ones that make the house a home where I felt loved and appreciated, safe, secure and comfortable. They let me be my messy self and loved me anyway.
A few years earlier I had an epiphany. Everything good I desire, everything good I want or love can usually be described in words that are attributes of God. Everything I love about home: safety, comfort, where I can be my messy self, security, love and affirmation – all of those describe God in a way. And the best thing is that He never changes, no matter what happens to your circumstances or your home. He is certain and stable no matter what.
Home is not as awesome when you go to it without the baby you were planning for. Then home hurts a little. I don’t even remember that first drive home, but I remember we drove back to the NICU that first night just so we could be with Evan. So I could sit by his bed and watch him sleep for a couple more hours. I know I was supposed to be home resting and recovering but the thought of him there with out us made me think he might be lonely and I couldn’t help but cry, just as I‘m doing now as I write this.
Gunn helped redefine home for me. He said home is where we’re together, so for the time Ev was in the NICU, that was home, our house was just where we slept. And so for the next two weeks, that was home. We would wake up get ready and get to the NICU around 10 am. Gunn might leave to get some work done for an hour or two and bring food back but we would be there to change Ev’s diapers and help with feedings. His nurses were amazing and helped us so much. We learned about all his medications and how and how much to administer. I wasn’t nearly as sensitive and volatile as those first few days and learned everything I could. We had to leave for the 7-9 shift change so we would go home and have dinner. Some nights when I missed Evan too much to sleep we would come back, other nights I would just call for updates.
There was good news every day, but some times bad news too. It felt like 3 steps forward 1-2 back. But by day 4 or 5 they had ruled out internal bleeding and concluded that Evan had an umbilical avulsion. His umbilical cord was shearing away from the placenta so he was losing blood and ingesting it. It’s rare and if you don’t catch it in time the baby dies. It’s serious stuff. (Here’s an abstract of a case study similar to ours. http://www.ncbi.nlm.nih.gov/m/pubmed/22825275/)
So by day 5 we were feeling much better about his situation. What they explained was that with that amount of blood loss the body starts putting organs in hibernation to protect the brain. Liver, kidneys, lungs, then brain, at least I think that’s what they said. His brain had been fine all along. His lungs had recovered in the first 24 hours. (His kidney numbers would stop falling and level out about day 8 and were within normal limits by day 15, and his liver numbers finally reached normal limits at 7 months old.) They warned us that the shock of delivery would just take time. The goals were to get him maintain his body temperature and learn to eat. Once he could tolerate feedings he would be home free.
I had a lot of fears. I had seen friends with sick NICU babies who had never learned to eat and ended up going home with feeding tubes. And so we prayed. Prayed for complete healing because with God all things are possible. We also prayed for faith to believe him because his ways are not our ways, he sees bigger and farther than we do and sometimes the hard times now are for the benefit of someone later. I don’t know how He works or does what He does, I just know that the Bible teaches me through the story of Joseph that what was meant for evil God used for good (Genesis 50:20) and in the story of the man blind from birth that some suffering is not a punishment but an opportunity for God to reveal himself and bless people and bring himself glory (John 9:1-3).
Something beautiful happened in that NICU in all those days of sitting and praying. God healed a part of my heart, a piece of my faith that I knew was broken, but didn’t know how to fix.
You see, almost three years earlier our pastor’s wife, Karen, died of cancer. She was 34 years old. She left behind a husband, twin 15 year old girls and a 13 year old boy. She had been diagnosed shortly after we moved there and we had the pleasure and joy of knowing her while she battled for two and a half years. She loved Jesus and lived well. We prayed for healing all the time and we prayed for comfort and God’s will and all the other things you are supposed to pray. We were there with some friends singing worship songs when she passed and it was sad and terrible and a blow to my belief in God’s goodness.
I’ve always been confident in prayer. I like praying and I’ve had some great praying people show me what a healthy prayer life looks like. I have practiced the discipline of prayer and have found my best, most focused, least rabbit trail praying happens when I write them out. And so for years I’ve prayed. But when Karen died and when our 26 year old friend passed away from cancer shortly thereafter I stopped asking for healing. I asked for comfort and for many to see and know God through it. I always knew God was able, I never doubted that part, but I stopped believing he was willing. And in that thinking I was actually making an accusation. With my lack of asking I was saying that I didn’t believe God wanted them to live but rather that he preferred death. I was saying that he didn’t care about life. I didn’t consciously think or say these things, but subconsciously I believed them, and so I prayed or didn’t pray, accordingly.
The saddest part about believing lies is that they dim your view of God. They dim the bright, perfect light and truth of who He is. And as it gets darker it gets harder to see other truth and soon the lies, the fear, the hurt, the doubt just lead to this overwhelming hopelessness. And that’s a scary place to be.
Six months before Evan was born I realized that I had stopped praying for healing and over the next 6 months God would give me opportunities to think about it, but I never really reached a resolution.
And then Evan was born and I prayed like I never prayed before. And I asked, begged and pleaded for his life and for healing. And some how, someway, I believed God was both able and willing. God healed my faith with Evan, and not just because he got better. It was a gift! It was God touching my heart and mind and saying “I am the healer not just of bodies, but of souls and of faith in ME.” I could not muster up the faith, I could not manufacture belief, it was a gift from God.
I pray that for any one reading this, if you are feeling like you’re not sure that He’s able or willing that you might tell him even now what you’re feeling, what you’re thinking and that he would heal your unbelief and give you a measure of faith that’s bigger than you even expect. I pray that our God, who loves you so completely, would overwhelm your heart and mind and give you a hope and peace that is beyond your understanding.
And as we prayed and read we also preached the truth of God’s word to ourselves over and over again.
I would include a bunch of journal enteries, but then this would be 1000 pages, and ain’t nobody got time for that right now. Suffice to say it was a daily prayer to ask for strength and faith and healing and joy and hope. And we posted verses on his crib, and we cuddled him and read him the word of God and we went to the house and would come back the next day to do it all over again.
On day 13 he was tolerating feedings and got to have the tube from his nose removed. I think his PICC line was still there but it just felt glorious to have one less cord attached.
On day 14 they said that if he kept up his feedings he might go home over the weekend! It was amazing. We were getting so close.
On day 15 we got a call at 9:30 am. “Make sure you bring the car seat, Evan’s going home today.”
I cried as we left the NICU. Cried tears of joy and tears of fear. How can they just send this baby home with us? That seems dangerous and unsafe. We don’t have heart rate or oxygen monitors. We don’t know what we’re doing and what if something happens?!?!?
The drive was surreal. As we pulled up and walked into the house we knew that we had weathered a storm and we knew that it was only by God’s great power and grace and mercy and love. And now we were home as a family of three and it was truly was home, sweet home!
February 3, 2017 at 1:19 am
I love you, your family and your story so much. Thank you for writing and for sharing Deb. Xoxo
February 10, 2017 at 4:21 pm
This read is just as wonderful and comforting the third time around 🙂