Luke W

Luke W ~ Super Hero Alias: Lonestar Luke

Age: 2 years old
Weight at birth: 3 lbs, 9 oz
Weeks gestation: 36 weeks
NICU stay: 44 days

Diagnosis, surgeries, complications?

Luke’s list is bigger than Texas! He began life as an IUGR baby (he didn’t grow well in utero) and had a pelvic kidney. Then, we discovered two holes in his heart (VSD and PDA), a tethered spinal cord and an incomplete skull.  We breathed a sigh of relief, until a nasty villain showed up, necrotizing enterocolitis (NEC). We had an emergency transport to Dell Children’s where Luke underwent emergency bowel surgery and lost 16cm of bowel and his appendix. We owe Luke’s life to his surgeon, neonatologist and an army of prayer warriors.

Why Should Your Child Be Recognized as Preemies of the Year?
Lonestar Luke may have come out tiny for a 36-weeker, but the lessons he taught us have been bigger thanTexas:  patience, trust, surrender, joy and thanksgiving.  There have been many times Luke’s life hung in the balance.  Yet, he’s a tough cowboy and keeps defying the odds and surprising his specialists – all ten of them.  Somehow, he roped his specialists into five surgeries on his belly, spinal cord and ears (one more to go on his brain) and eight hospital stays.  One of his biggest nemesis’ didn’t show his face until surgery number four; he and cephalosporins are arch enemies.  But, once he got a shot of new blood and plasma, his sharpshooting skills were better than ever.  The chuckwagon still doesn’t hold much appeal for him; he’d rather drink his calories than eat them.  He does have two mighty cute cowgirls (speech and occupational therapists) that are working to convince him otherwise.  He’s still a wrangler of few words, but he does have a mighty fine laugh, big blue eyes and a soft spot for animals.  You’d have to ride the range a long time find a tougher cowboy than our Lonestar Luke.

Using Three Or More Characteristics of a Super Hero, Please Describe Your Child.

Tone of Surprise:  Lonestar Luke is an expert in surprising his enemies, like blood allergies and developmental delays.  Just when they think they’ve corralled him, he makes an escape for greener pastures.

Strong-willed:  Luke’s four siblings don’t offer their cowboy brother any slack.  He has to arm wrestle for his favorite toy, run like the wind when he wins it from his brothers and sweet talk his sisters when they take it away.

Hero:  Our 3lb. 9oz. cowboy came out galloping and has become a hero to his siblings, his parents and his friends.  His brawls have been many, but he comes out stronger each time.

What advice do you have for future NICU parents?

Get a Hand to Hold mentor.  Learn to say “yes” when people ask if they can help.  Seriously.  Give them a job and ease your stress.  Pump if you can, that breastmilk is gold.  Cut yourself some slack.  This is, quite possibly, the hardest thing you’ll ever do.

Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?

My Hand to Hold mentor, Kelli, gave me much-needed sanity, a big hug, a cold Dr Pepper, plenty of chocolate, a listening ear, sound advice and a heart full of understanding.  No website, no book, no brochure can give you all that…only a parent who’s been there before.