The Power of Baby P - It’s Golden
A quick note from your co-author - Waylon’s mom here — maybe less laughs, but all heart.
Waylon is more active today, which has been nice to see. That said, it also comes with signs of him feeling a bit uncomfortable—expected as he continues to come off anesthesia and his body adjusts to the major switch he just had yesterday. His care team is closely monitoring and adjusting his meds, positioning, and keeping his temperature warmer to support his pain management and keep all his numbers on track. Ideally, he stays within certain metrics, not too uncomfortable but also not working too hard. Right now, he’s resting and looks cozy.
The three of us took what our nurse called a “cute family nap” today together. It was a nap for the ages — the nap of all naps. Waylon’s room has a machine that helps extract fluid in his chest and hums like a babbling brook, which I think helped us all gonk out. Plus, it was a stretch with fewer care team visits — a win for napping and signs of Waylon’s stability alike.
Waylon has had a busy past 24 hours, with every body function being monitored closely from head to toe. Some notable updates:
His chest X-ray looks really good. It’s clear and shows great oxygen flow compared to yesterday. This was very apparent on his scans - even for the less experienced eye.
His blood oxygen levels (checked several times daily), EKG (done this morning), and brain function (monitor ongoing) are all looking very good.
Waylon’s breathing is still supported, but only as needed. He has a tube that steps in to help initiate breaths if he doesn’t do it on his own. The good news is that he continues to make big strides in breathing independently. The ratio of breaths he initiates on his own versus those assisted by the machine is steadily improving — a really encouraging sign.
This just in : Waylon’s echocardiogram from this morning looks great ! His heart’s structure and function are solid.
One of the big milestones we’ve been watching for since Waylon’s surgery is… pee. Yep, around here, pee is basically gold. It might sound like a small thing, but after major heart surgery, it’s a huge sign that his kidneys are waking up and doing their job.
The kidneys play a crucial role in regulating fluid levels, filtering waste, and keeping the body in balance. After open-heart surgery — especially with a condition like d-TGA (where the heart’s anatomy has been rerouted) — blood flow to all the organs needs time to recalibrate. The kidneys, being one of the furthest organs from the heart, can be slower to respond, especially when the body is still holding on to excess inflammation.
Since birth, Waylon has had a monitor on his lower back to keep a constant eye on kidney function. Now, post-op, the care team is stepping in with medications and small amounts of fluid to support his kidneys and help them catch up. The goal: better circulation, fluid balance, and continued healing.
If things keep trending in the right direction — and we get some of that baby gold — the team is hopeful they’ll be able to close his chest before the weekend.
Transitioning out of the NICU and into surgery felt like being uprooted. We were comfortable there — I could hold Waylon daily for hours, and those moments of bonding were precious. Stepping into the anticipation of surgery, and then seeing him post-op, was really hard—something I wouldn’t wish on any parent. Today has been easier and I am holding onto the relief of his progress and know this stage is temporary and necessary to get him closer to home. Each day, he grows stronger and less reliant on interventions.
Things that have helped these last 6 days(but who’s counting):
Good food! Thank you to everyone who has provided meals — they’ve been a true comfort. My milk supply is thriving. I’ve been pumping almost every three hours, drinking lots of water, and feeling ravenous. Food has never tasted so good. We’ve had a couple of Whole30 gift cards come through anonymously — if you sent one, please let us know so we can properly thank you!
Routine comes easy here when you are just meeting essential needs and your options are limited. Unsurprisingly, a lot of our routine has revolved around food itself(see previous Mitch blogs for context). We enjoy the outdoor patio with a nice garden that we can access for fresh air and even better if we can catch the sunset.
Today, we stumbled upon farmer’s market with garlic chips, salsa, guacamole, and ceviche that were absolutely off the charts — it brought some life back into us.
The small things - even a glance of compassion or look of shared understanding from others here mean so much.
I took the opportunity to join a craft event the NICU set up and created a name sign for Waylon. I met a few other NICU moms which was nice to have a common understanding and shared experience — WOW, the things people go through. One mom we saw a few days ago was back visiting as she spent about a year in the NICU with her little one.
Being playful with this little one. Unlike with Donavon, some nicknames have rolled off the tongue. Including WayJay, WayWay, Wayson, Waylie, Wayzie, Swayzie.. Cast your votes and ideas below.
Catching 10 minutes of a family lounge movie.
Masks aren’t ideal but not a huge bother, and somewhat helpful if you’re having an ugly cry moment.
The nurses have been reassuring, competent, and inclusive. Mitch and I deeply appreciate their clear explanations as we try to understand every part of the process. Witnessing the expertise of what feels like the very best in their field has truly been a gift — and as an added bonus, they’ve all been incredibly kind.
Special mention for my absolutely amazing and loving partner — Mitch has been our hero. With compassion, humor, patience, and grounded assurance, he moves through each day with curiosity and trust in Waylon and our team. He has been our saving grace, and I know every provider, especially the nurses who are all laughs when he is around, have appreciated him, too.
We love you all and are so grateful for YOU. All of your support has lifted us up and kept us going. We feel and appreciate every check in and gesture and know Waylon and his little yet mighty heart does too.
