I’ve had a few requests for more raw Kathryn – read on, my friends, read on. (oh and this post is probably PG13, not the “family friendly” one)
Today really stunk. Really and truly, one of our worst days in the NICU. As Dr. M said last night, it could be worse. But, as my sweet nurse Beth reminded me this morning, it could also be a helluva lot better. I like Beth’s version.
On our way to the hospital this morning, we got a call from the resident and they found blood in Luke’s diaper. By all accounts, it looks like the NEC has returned, this time in his colon. And we just thought the Third Ring of Hell was over.
There were a lot of tears from me today, a fair amount of Luke holding, some “are you freakin’ kidding me” looks between Scott and I and a whole lot of anger at God. Yes, I said that out loud. Just really frustrated that our 4lb. son has to endure such a battle. That just doesn’t seem right.
It’s taking us a while to wrap our brains around all this. You see, Luke’s initial case of NEC was bad – and I mean really, really bad. The surgeons and neos told us it could recur. Ding, ding, ding…they were right. So, what does it mean and where do we go from here?
It means that Luke will be NPO (no feeds) for another 7 days and will be on antibiotics. And, we’ll be looking for a few things over the next few days – his belly (is it distended or soft), his behavior (happy or not), his pain level (minimal or horrible), his diapers (no blood or blood), his white blood cell count (stabilized or rising). In a few days, we’ll do an ultrasound to look for abscesses and extra fluid. If that’s inconclusive and he’s showing signs of not getting better, then we’ll do an oral contrast and if that’s inconclusive we’ll have to go back in surgically and look at his colon, possibly removing some of it. To clarify, the really icky part is that the antibiotics haven’t really shown that they help get rid of NEC, but it’s the best that medicine can offer right now.
God gave us a few rays of sunlight in the darkness today. Fr. Bud, what a providential meeting with you on Floor 4 at Dell Children’s. Your compassion and your raw emotions were a welcome breath of spirituality that we so desperately needed. Colleen and Peter – thank you for the hugs and laughter. Melanie, thank you for your texts 🙂 All you prayer warriors, thank you for lifting us up.
So that’s the skinny. Luke is really sick. And I’m scared to death that he may not get better. Yes, I said that out loud. Today reminded me that Scott and I are not superhuman (although I never really believed that pipe dream), we are just imperfectly human. We are parents who love our children beyond comprehension and we are madly in love with Luke. We find ourselves dreaming of the day he sits in our living room with the rest of the chaos. But we are also keenly aware of the fragility of life. There aren’t any guarantees.
Do we believe in miracles? Absolutely.
Do we pray for one? Nope.
Why not? Because I think that’s a chicken way to pray. Really I do. That’s the easy prayer. The “Oh God, please take away the pain and make him better” doesn’t make me rely on God. It gives me false hope and when God doesn’t answer that prayer the way we want, then some lose faith. Our prayer is this…that God gives us the grace the strength and the wisdom to endure whatever path he has carved for our family. We know – and truly believe – that Luke’s purpose is great. We just don’t know how great it will become.
Dear Lord, this path is hard and we are tired. In those moments that we feel we cannot do this (and we had a tubload today) show us that we can. I never knew hope could come in such a tiny, hospital-blanket-wrapped bundle named Luke.
St. Luke the Evangelizer…pray for us.