Here's what's been going on in the Revelle house during the last 2 months:
Joel man has been busy growing like a weed! He's over 13 pounds and 24 inches long. His sweet & laid back personality has continues to develop; he's starting to laugh, smiles a lot- even though you'd never know from his pictures and rolls over (back -->front as well as front-->back when he really wants to). He eats like a champ and loves his baby food. He's working with a physical therapist 2x a month and his doing well; no major delays at this point other than typical preemie things. He'll be having a hernia repair over the summer, but since they've waited until hes this old it's able to be an outpatient procedure (yay!). We are so thankful for his sweet demeanor to balance out the craziness/sass/spunk that Bradley has. Speaking of Bradley....
We had a very easy transition getting everyone home (hardest part was leaving our beloved NICU family) and made it through most of the post-discharge follow up appointments that kept our schedule pretty packed. However, after 1 month at home we discovered his shunt had malfunctioned and he was admitted to the 12th floor at SLCH. It came as such a shock to our system, not only did we hate the idea of being back in the hospital so soon, but it was just such a harsh reminder (although, we needed it) that even though he was home he is still very much a medically fragile guy and there is a lot we need to watch for. The procedure was successful and he's been a different kiddo ever since. We were so lucky to only have a weekend stay (such a weird thing to be admitted to a patient floor rather than the NICU, we had a pretty rough adjustment) and he was home in time for the Blues game that Sunday. The following week was filled with more stress and worry than we had felt in a long time. Monday he had a horrible reaction to an antibiotic and we spent 3 hours in the ER with hives and swelling, Wednesday Neuro took the dressing off his head from the surgery and he started leaking CSF down his forehead, Thursday we rushed down for more stitches and Friday for a follow up. Needless to say the Neuro APN and I are on a first name/texting basis.
After that insane week things have happily settled down and he's doing better than we could have hoped! He is seeing occupational therapy, physical therapy and a speech therapist. Everyone's main goal right now is working on his feeds as he is still needing about half of each bottle tube fed. His weight gain has been outstanding (3+lbs in 27 days!!) so for now we are choosing to not move ahead with a G-tube procedure which would be a more permanent feeding solution. He's taking more volume consistently and has fallen in LOVE with baby food, we are confident he'll be off the tube in no time. And really, after everything this trooper has been through I would tube feed him forever if he needed it. He is so smiley, loves to have anyone talk to him and is always much more willing to put up with my nonsense and give me a giggle than Joel. Some say he's a bit taken with his Mama, and I wouldn't have it any other way. We are forever thankful he is doing so well, meeting milestones & thriving after all he has overcome. He even had his TV debut on Channel 5!(Video Here)
Thank you again to everyone that has followed along with their journey! We appreciate all of the help, support and most of all prayers. If you'd like to subscribe to these updates, there should be a box at the top on the right side of the screen.
Love this!!!!! ❤️
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