Checklists and St. Nicu

David has a checklist of criteria to meet before he can be discharged from the ICN. To begin with, he must be able to regulate his body temperature in an open crib, which he’s been able to do now for two weeks. We take his temperature every three hours to monitor this and he’s been in the 36.5-37.5 range every time.

He needs to be free of any apnea and bradycardia episodes for 7 days. Those are the “As and Bs” I talked about discouraging him against in one of my earliest posts. He’s had a daily dose of caffeine since the day he was born. This helps to stimulate his brain enough to remind him to breathe; it’s basically a daily morning espresso shot to keep him “awake.” The docs discontinued his morning caffeine this past weekend and his 7 day apnea countdown has begun. He’s now on day 5 of 7 with no episodes. I sort of hate that I just wrote that because it sounds like a jinx to me. But that he hasn’t had an apnea episode is a double dose of good news; it means his brain is self-stimulated and he’s not a two-month-old caffeine addict.

Most importantly he needs to feed by mouth, either by bottle or by breast or by both. He can’t go home with an NG tube and we certainly don’t want him to go home with an NG tube. David unfortunately won’t feed well by mouth until his oxygen needs decrease. It just simply stresses his breathing too much. It’s a discouraging process, that’s for sure, and the doctor encouraged us at the beginning of this week to remain patient in the coming weeks, because David’s not going to make any quick moves forward. His lungs are damaged from all the intubation and ventilator interventions that he needed for his bronchopulmonary dysplasia. He still has a lot of healing to do.

Fortunately babies can grow new lung tissue until the age of eight. So the good news is that although David will likely go home on oxygen, he’ll outgrow this in childhood. This winter will be the hardest test for him, and even the commonest of colds can be a real danger, so we’re advised to take all precautions. If that means placing Purell pumps in all rooms in our house, so be it. We’ve been through a lot over the last 60 days; we can handle a few more months of obsessive ethanol treatment.

We had a wonderful Christmas morning with David. We thought so at least. David wasn’t as excited about our “First Christmas” photos as we were.

So Graham did what he could to console him.

And once he was consoled we convinced him to put on his Christmas sweater.

He finally agreed, and we thought he looked dashing.

An anonymous graduate family placed stockings at each bedspace Christmas night. Inside we found this, which we thought was so brilliant we wanted to share it. I hope I’ve given you enough of a preemie-lingo lesson to understand it. But if not, I apologize, and then take my word for it, it’s pretty great.

Good health to you all as we enter the New Year.

J & G & D

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6 thoughts on “Checklists and St. Nicu

  1. Hi Jane & Graham……….David looks so splendid !….Holy cow ! He has a double chin !…. How great is that ?…..

    Little Man Webster……Good work on the growth thing,,,,,,Now lets get the breathing and swallowing thing down pat…..you’ve done so well and come so far…..what an incredible feat !…..these last tasks might be hard to master but we have every confidence that , having come all this way, there’s no possibility you won’t be able to master them, go home soon, and start giving your folks lessons in 24 hour parenting……..I mean, really…..How many new parents get to sleep through the night for a few months after the birth of their first child ??…. You have to toughen them up…..Teach them to be up-beat and cheerful on 3 hours sleep……You, David have a job to do !……Time to stop worrying about your struggle to live and get on with task of teaching your folks all about their new roles as Mom & Dad…forever….. !………

    With Love,…….Murray & Karen

  2. Wow, that poem brought tears to my eyes. I’m so glad that there is a community at the hospital that embraces and supports your family. David looks adorable in his togs. Can’t wait to pinch his little cheeks! Love to you all!

  3. Good cheer to all of you as the new year approaches! David, hang tough, we’re sending the great breathing vibes your way. Mom and Dad, be sure to pat yourselves on the back this New Year’s Eve! You’re working incredible miracles that only awesome parents know how. Love, The Temples

  4. Hi Jane & Graham…….So pleased to hear about David’s progress and to know that he can rebuild his own lungs as time goes by…..( You have done such an amazing job of educating us that our fears for David have been somewhat allayed )…..No doubt everyone will want to meet David when you get home with him, but don’t hesitate to be firm about keeping folks at bay……Our adventure with the ” Great Washburn Kidney Exchange ” taught us lots about keeping germs away….. Murray & I spent our 42nd wedding anniversary at the laundromat washing absolutely everything washable in the house !….Folks could visit Annie only from the porch, little neighbor boys brought their guitars and serenaded her from the screen porch, masks and Purell and Sani-wipes were everywhere and gifts of plants and flowers decorated the patio, but not her room…….It actually got quite easy and our success was well worth the effort !…….If you need help, we’re real good at ‘ laundromat ‘…..and we’ll wait to meet David til he’s out and about……You two are amazing and we salute your adoring devotion to your dear son….no doubt, the absolute worst is past and It will only get less stressful as time goes by……….What a great job you’re doing !……Best……Murray & Karen

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