Welcome Home Waylon

Hello everyone. We are so excited to let everyone know that after 28 days, Waylon made it home to celebrate his 4-week-old birthday. He did it!

Waylon started really packing on the weight once his doctors opened his feeding windows and let him go to Milktown. Through mostly Mitch’s overnight feeding tactics that some occasionally described as excessive, Waylon crushed bottle after bottle of milk and gained weight each day from Saturday through Wednesday – clearing his way to be released from the hospital and finish his recovery at home! We’ll continue to have to make sure he’s eating well and gaining weight at home. This hopefully won’t be a difficult task given our milk storage.. see photo below of Joyce’s hospital supply they sent us home with in a wagon. All but one bag they called us with to let us know they forgot as we were walking out the door.

Waylon has not, unfortunately, been all the way weaned off oxygen. So, he will likely be with his oxygen rig for the next couple of months as his body grows, adapts and hopefully figures out how to use his left lung a little better. To that same goal, Waylon continues to be on a diuretic that will hopefully keep liquid build up in his less active lung from impacting its continued development and hope for spontaneous recovery.

He also continues to have a couple of stubborn clots that see us drawing straws twice a day for who must administer the injection. It’s a small needle, but a needle all the same in a household now deprived of the calming reassurances of medical professionals.

Finally, Waylon gets a low dose aspirin to keep his heart on its recovery track as it regains its power and grows to fit his rapidly expanding body.

All of this is a grain of sand in the vast relief of being able to be at home with Waylon and our family. It’s incredible to understand all that Waylon went through and how strong and resilient he has been. It also helps that he’s a sweet baby and we’ve been loving all of the newborn snuggles at home. Donavon was away at Baba’s while we got settled with the equipment and the amount of “hardware” Waylon will be traveling with for the next couple months. Now we are all under the same roof and navigating this next phase. Donavon has been wonderful with Waylon and we hear a lot of ‘baby’ from him as he gently pats Waylon and checks in on him with curiousity. He is also still a toddler and we are adjusting to our new man-on-man defense at home.

Waylon is fragile from his medical treatments, recovery and ongoing blood thinners – so Donavon’s big hurdle will be learning “careful and gentle” – and at the same time not being discouraged from interacting with his brother and soon to be best friend - although the best friend field is a tight competition right now considering all of the close ties Donavon has made while we were spending a significant amount of time away.

We continue to sit in gratitude from all of your love and support we have received during this journey. All of our poems, prayers, songs, meals, gifts, words of wisdom, words of strength powered us through what was undoubtedly the most difficult challenge in our lives. We felt so supported through this difficult time, and could never have done it without all of you on our team.

I’m sure at some point we will try to drop back by our temporary home at CHOC to properly thank the whole medical team that saw us through – it is a crazy thing to go from spending most of your time with people for a few weeks to suddenly, in the course of a couple hours, be evicted to the street below. I’m sure the emotional rollercoaster of getting a new patient, working with that patient, having them recover and leave – is somewhat bittersweet for the medical staff as well. I’m 100% confident that many of the wonderful medical professionals in the CVICU this morning are missing Joyce’s incisive questions and my clever witticisms (actually, they are probably relieved). But we in all seriousness, we are missing them. They are wonderful people and gone from our lives forever. Thank you medical team, we will forever love you and look forward to sending you cookies but never, ever staying with you again.

Mitch and Joyce