Today was a really, really good day for Luke. Admittedly, I’m a little scared to even type that, but in the spirit of ‘living in the present’ I feel like we should celebrate the small victories.
Luke has tolerated his small feeds very well the last couple of days, so with the blessing of our neo and the surgeon, we upped them to 6cc every 3 hours. Luke is such an overachiever. Totally don’t know which side of the gene pool that’s from…
The cardiologist also dropped by and we chatted for about a half hour. He was ‘quote’ very encouraged ‘unquote’ with what he heard. He says the murmur is getting louder and at a higher pitch – both indicators that the VSD may be getting smaller. He couldn’t hear the PDA. Tomorrow’s echo (ultrasound for the heart) will give us a better picture of both. Can I just say I really like Dr. Johnson? We chatted about all things Catholic and even shared a little of our faith along the way. I so dig being in a Catholic hospital.
Some of you have been encouraged – as are we – about Luke’s feeding progress. But, I feel like I should clarify just what it is we need him and that super gut of his, to do. Luke’s problem has never been the “suck, swallow, breathe” scenario that plagues many preemies in the NICU. Rather, his challenge is that icky NEC. If we advance feeds too fast, we can overwhelm his gut and cause the NEC to come back, his gut could develop strictures (which is the intestine developing scar tissue and not letting food through which would cause vomiting) or it could be overwhelmed and not process the food and “dump” everything prematurely into his ostomy bag. All are real obstacles. Right now, he’s at 6cc every 3 hours – our goal is 50cc every 3 hours.
Yeah, long way to go folks, long way to go.
So, when I say we’re cautiously happy, I have emphasis on both those words. We take a deep breath every time he eats hoping and praying for a good outcome. It is an excruciating game. Watch. Wait. Watch. Wait. With a healthy dose of prayer 🙂
I had the rare chance to enjoy lunch with a friend AND my cute daughter! She had a playdate and the four of us gathered for some good eats. Karen, lots of kudos for making it such a nice lunch hour.
And now for your daily reflection 🙂
I’ve had the sweet gig of feeding Luke at 2 and then snuggling in the really uncomfortable chair in his room for a catnap. The chair is a reminder that we ain’t home yet. But the snuggling – oh the snuggling – with his sweet little head on my chest, making the cute lips and breathing the tender baby breaths is my heaven every afternoon. For just a moment I feel like a normal mom, cuddling with her newborn.
I forget about feeling robbed of precious time with him.
I forget about the longing to go home.
I forget that he is hooked up to a million tubes, monitors and medicines and just pat his little back.
I forget that his first month of life feels so sterile.
I forget that seeing a happy pregnant mom reminds me of what we didn’t experience this time around.
And then I remember that every other mom in that hallway feels the exact same way. God bless Evangeline’s mom tonight as they venture home for the first time. Adieu Room 6 – another baby will take her place. But today I am hopeful that Room 8 won’t be our home forever.
God bless you Luke. Seeing you is the highlight of my day.