As many parents have been celebrating or are preparing to celebrate graduations from preschool through college, we celebrated our own graduation of sorts today. Clara was moved from the Neonatal Intensive Care Unit (NICU) to the Intermediate Nursery. This is a big promotion and (hopefully) our last stop before home. Twenty-four hours ago, I was writing about unknown sicknesses, new IVs, stopped feeds and potential scary unknowns ahead. What can I say? Clara has an amazing team of prayer warriors and we serve an amazing, gracious and loving God. We’ve said it before on this journey and we are saying it again tonight: What a difference a day makes.
This morning my dad was getting in his usual early morning visit when my cell phone rang and he was asking if I was on my way yet – Dr. Yang wanted me to breastfeed. I was shocked since we’d stopped her feeds last night and still didn’t know the source of her bleeding, but of course I quickly gathered my things and headed straight to the hospital. Clara didn’t nurse great this morning (we are still working on staggering her feeding schedule with her morphine schedule so she’s not too sleepy when it’s time to try to practice eating), but she did better during our other attempts today. During rounds they made several progressive decisions that I was hopeful for, but honestly not expecting. Since her labs from yesterday came back negative for infection and her x-ray looked clear, they are assuming that the bleeding is from a milk protein allergy. It’s a diagnosis of exclusion, so we can’t really be sure, but that’s what we’re going with. She only had one poopy diaper today, but it was blood-free, so hopefully that issue has been resolved! They resumed her feeding tube feeds right where we left off yesterday (76ml of my breastmilk - now dairy free - over an hour every three hours) and said that I could try breastfeeding three to four times a day to supplement that. We reduced her ativan dose from 1.3mg to 1.0mg although it is still “PRN” or just “as needed” and she hasn’t had a dose in over 24 hours which is great. She may be telling us she’s done with that drug altogether. We also turned her flow down to 800cc and she’s been at 21% oxygen and maintaining O2 sats of 100% or close to it this afternoon and evening. They stopped those IV fluids and hep-locked her peripheral IV in her hand. So they said she could be “intermediate green” and since there was a discharge today and a room was available, we moved. We just wheeled her little crib down the hall while my mom sang Pomp and Circumstance and we celebrated with Clara this next big milestone.
Her new room is semi-private. She shares it with two other babies, but it’s a smaller, quieter and calmer space. There’s one nurse to those three babies and I can tell already that we’re going to be very happy here. They’ve encouraged us to take over as much of her care as possible and prepare for her coming home – that’s what this intermediate stage is all about. We were already changing her diapers and taking her temperature and helping with many things at her bedside, but now we’ll be able to do even more. We will just focus on the last few things that have to happen for her to get home – weaning of her morphine and her oxygen as well as sustainable feeding. Such good progress has been made with all of those goals. I really believe we’re on the fast track home.
I know you’ve missed out on Clara photos this week, so I’ll catch you up on several days’ worth.
|Beautiful wide, alert and open eyes|
|So cute in her fishies|
|Watching her mobile, no doubt|
|Clara smile! Common, but difficult to capture on camera|
|Such focus in her eyes|
|I really love baby feet|
|And I love patting ruffle butts|
|Ready for the beach in August with my crab outfit|
|Sleeping soundly, snuggled up with blankets, lovies and my paci. Life is good.|
|A little "tete-a-tete" with Bigdaddy|
|This big man loves this little baby so much|
|Clara and me with Martha, the lactation consultant, who has worked so patiently, lovingly and passionately with us.|
|I should also mention that Dr. Yang really loves Clara. See it in her eyes?|
|Goodbye, NICU Pod A!|
|Hello, Intermediate Nursery Pod F!|
|Clara is hot-natured like her daddy. Sometimes a girl's just gotta strip down.|
A friend who has a five year old CDH survivor sent me this message from her child today:
“WHEN are we gonna get this baby home to her regular bed??!! Do we stop praying for Clara after she gets home all better? I'm not. I might pray that her Mommy even buys her candy. No, Clara is too tiny to eat candy."
It may be a few years before Clara can eat candy, but we appreciate your continued prayers for her full recovery so she can get home soon to her “regular bed.” God is faithful.
Your love, Lord, reaches to the heavens, your faithfulness to the skies. Psalm 36:5
Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done wonderful things, things planned long ago. Isaiah 25:1