Please don’t cheat…in order to truly appreciate today’s post, you have to scroll down to yesterday’s and read the update. For reals.
At 11:01, we drove away from Seton and sped over to our new NICU home at Dell Children’s. As soon as we hit the door, it was like a covey of quails. The nurses started asking us what we needed. Food? Water? Kleenex? You name it, they were on it. Five minutes later, Luke was settled in his new room (the penthouse suite all to himself, in Bay 8). Actually, every NICU baby here has his/her own room, along with a 2:1 patient to nurse ratio. They immediately sprung into action.
Before I go any farther, I should explain what it is, exactly, that was causing all the rucus. Luke had a definitive diagnosis of NEC. Necrotizing enterocolitis. Or, as we affectionately call it, the Third Ring of Hell. I’m going to pull a “My Big Fat Greek Wedding” definition on you. “Necrotizing” means the death of tissue, “entero” refers to the small intestine and “colo” the large intestine and “itis” meaning inflammation. It’s basically a bacteria the appears in the intestine and eats away at the bowel, sometimes eating a hole through the bowel, spilling bacteria and other nastiness into the stomach. Lovely sounding, right? That “perf” is dangerous stuff, especially when your under 4 pounds. It’s a complication, occurring in 1%-5% of NICU admissions. Yes, our Luke is a trend setter, at just 10 days of age.
Ok, school time’s over.
Dr. Pont came over and we began talking about our course of action. She had already started a new round of antibiotics, a dopomine drip to get the urine output going and some phentanyl for pain relief. The pediatric surgeon was paged, Dr. Meyer, and he assessed Luke. Again, the Holy Spirit allowed the NICU to plant a seed. He told us surgery was a real option, in fact he said Luke’s chances were about 50/50. To be quite honest, it was during Luke’s admission at Dell that Scott and I felt he might not make it through the night. We were put into an excruciating pattern of watch and wait. We were given a “rooming in” room just steps from his Bay and we tried our hardest to get some rest. Ha, notsomuch.
It was a restless night and early morning for us to say the least. I’m guessing we got about 4 or so hours of “sleep.”
We awakened to some good news in that Luke’s night was stable, although he hadn’t really shown any significant signs of improvement. Any slight touches to his belly brought about horrific pain and we spent much of the morning holding his hand and silently crying at his bedside.
We did have a bright spot during late morning rounds where we reviewed Luke’s evolving x-rays and blood cultures. So far, stable. But, the neonatologist was quick to point out that NEC can turn on a dime and that, in his words, “It sucked.” Agreed.
Scott’s Mom and brother drove in and met us at Luke’s bedside. Seeing your nephew/grandson for the first time with all those wires was hard on all of us. The two of them, along with Scott, left to get cleaned up and grab lunch while I stayed at the hospital.
A quick hat tip to Dell real quick. They believe if you’re a nursing mom, whether you’re rooming in or not, that because you feed baby, they feed you. So, all my meals while I’m here are taken care of. Well, between us and our insurance company anyway 🙂
I chatted with a friend, ate my lunch and was just getting ready to lay down, when I felt compelled to visit Luke one quick moment before catching a much-needed nap. I hadn’t been in his room five minutes, when Dr. Meyer appeared. After poking on Luke’s belly, he looked at me and said, “Kathryn, I think we need to go in and see what’s going on.” Howdy sledgehammer to the head. My response? “Based on what?” After a drama-filled hour and a half full of explanations, discussions between the neo and the surgeon, individual meetings with us and so many tears I cannot recall, we made the most difficult decision of our parental life. We entrusted the life of our most fragile child in the hands of a surgeon we had only known less than 13 hours.
While they were prepping Luke for surgery, Scott and I came to our room and just wept. Because giving your child to God, truly giving your child to Him, is total surrender. It’s humbling and hard, but you know in your heart it’s what we’re called to do. And, it’s the realization that our life and our child’s life is not our own. These fantastically wonderful gifts of ours are simply on loan to us until they return to their Heavenly Father. We knew that in saying “yes” to the surgery, we might also be saying “yes” to an eternal life for our newest member so much quicker than we had imagined. It was in that moment I was reminded of the Bible’s most powerful scripture. One that came to mind many times today. “Jesus wept.” Seeing people you love in pain makes you helpless, but it also makes you do one of two things, move away from God or closer to Him. Today, our faith life as man and woman, as a married couple and as parents took one step closer to God. Quite frankly, it was the most difficult step I’ve ever taken. I praise God for giving me Scott to take that step together.
We travelled with Luke to surgery, squeezed his hand, stroked his head and told him a million times how much we loved him. And then we watched them wheel our hearts through the surgery door. Oh my. That is what it feels like to love so completely.
We immediately went to the chapel and prayed. And, once again God’s peace rained down. I mean torrential downpour people. We walked in with raspy voices and eyes full of tears, we sat down, held one another’s hand and our breathing slowed. We were most definitely in the presence of Christ. And while our physical bodies were no longer with Luke, we knew His maker was holding his hand in that operating room. A roomful of peace. Bring it.
The prep, surgery and post-op was difficult, but we were filled with confidence knowing that hundreds and hundreds of faithful friends and family were storming Heaven on Luke’s behalf. To be honest, I felt a little like a prayer hog. Oink. Oink.
We joined Dr. Meyer during post-op and he informed us that Luke had done quite well during surgery. He removed 16cm of small intestine, part of Luke’s colon and his appendix (yea, no future episodes of appendicitis!) He was clearly infected with NEC, in fact, much of that intestine had already liquified. God bless Dr. Michael and Dr. Meyer for guiding us today. We prayed for them incessantly. And we know you did, too.
We have many, many hurdles to jump before Luke is in the all clear. Today was a good day and we rejoice. But we know all too well the roller coaster of the NICU. We’ll spend the next 14 days on no feeds, continuous nutrition through an IV and constant doses of antibiotics. On Day 15, we’ll slowly and painfully begin feeds again. That will be the test of the success of the surgery. It’s a real possibility Luke could develop NEC again, or that his bowel could develop scar tissue that will have to be surgically repaired before successful feedings. Those will all come in time. We will take tomorrow, tomorrow.
It would be silly of me to think that I can properly say thank you for how you lifted our entire family up in prayer today. Y’all just simply rock. Your community, your faithfulness, your desire to reach out to Scott and I throughout the day is a witness. It’s our prayer that our little 3lb. 9oz miracle showed the Dell Children’s NICU what great faith looks like.
St. Luke the Evangelizer…pray for us!