I began this site (originally through Caring Bridge) as a way to update our family, friends and prayer warriors from around the world who couldn’t see and meet our little miracle for the months we were in the hospital. But I have kept it in the deep desire to provide insight, hope, encouragement, understanding and reality to those who might come across our story. So…the story continues with a few reflections that have been on my heart in these past few months without blogging.
- My athlete husband Eli pointed out very early that this was going to be a marathon, not a sprint, and at the time we thought we were referring to our time in the NICU. But indeed, our marathon continues 3 years later. Our life does look slightly different from others, but much like the bodies of ultra-distance runners adapt and running becomes a beloved part of life, we have adapted and we strive to just enjoy the run.
There is a lot of processing that continues when I’m reminded of where we were “On this Day” three
years ago, and especially this time of year it may seem to some like we are dwelling on the past. But for us, the reflection and the memories are about appreciating how far God has brought us, the experiences and opportunities He provided, and the people He ensured surrounded us. It’s about reminiscing on a time that, though crazy and abnormal and traumatic, was actually one of great peace throughout turmoil. When there is nothing you can do for your child, your husband, or yourself but pray (or when it’s so bad you can’t and you let others’ prayers sustain you), well…it’s a surprisingly beautiful place to be and you can only appreciate it after the fact. So thank you for bearing with the memories, especially from October-March!- That being said, we are also soaking in the moments we seriously didn’t think we’d see. Struthers LOVES riding his bike, going on walks, kicking and throwing balls in the yard, playing with trains and trucks and anything wheeled…all the while talking in coherent thoughts NON-STOP!
The NICU experience teaches you to focus on certain milestones that pave the way for taking your baby home. Off the vent, off TPN, central line out, IV out, off CPAP, off high-flow, feeding tube out, eating, growing, moving, awareness, room-air challenge… That is a healthy way of focusing on the future while in the NICU, but I wasn’t prepared for the fact that it’s part of our marathon that didn’t stop, and letting that mentality define parenthood is NOT healthy. The milestone-checking continues with every doctor’s visit, therapy, and weight check. But at a certain point, NICU parents have to make the same jump every parent does and trust themselves and their instincts about how their child is doing (the best NICU teams teach you this too). And you can only know that if you get out of that ingrained NICU mentality, stop focusing on the ‘shoulds’ or attaining the next benchmark and get to really know your child in a way that the heart monitor, oximeter, growth charts and developmental assessments will never reveal. The intimate knowledge of the child God gave YOU should guide the decisions you will make on their behalf for the next few years they are in your care. An excellent care team knows that and will come alongside you, helping you discern what not to worry about, the healthy benchmarks to strive for, and what milestones are actually important when. Trust God, trust the instincts and judgement He gave you, surround yourself with a team, and try to place that best-intentioned focus on the one thing only you can provide to your child.
All of that to set the stage for our most frequently asked question: ”Wow! He looks great–why is Struthers still on oxygen?” I could focus the answer on the medical mechanics, but what I want to say on the heels of the previous reflection, is that once I stopped focusing about whether we would pass the next room air challenge or how quickly we could wean down, and instead recognized all the things the oxygen DID allow, there was more freedom in that than I could have ever guessed. Even with the oxygen, Struthers’ respiratory limitations are becoming more apparent as he gets older, bigger and more active. But the tube and oxygen that accompany that sweet little cannula-tan-lined face everywhere are suddenly not just a hassle to plan for and transport. They are the tools by which he CAN run around and kick a soccer ball, ride his bike, pull the wagon, and even laugh or talk extensively without turning colors and losing breath. They are the very reason he has been able to catchup in his growth, and I’m fairly convinced they have something to do with cognition and language development being on track. We have lots of unanswered questions about why Struthers works so hard to breathe and requires the extra support, but what we are certain of is that it’s a relatively simple way to take some stress off his body, and by keeping him on we have perhaps allowed for other areas of development to stay on track. And this Mama’s ok with just knowing it’s what he needs now, and I will no longer worry about how long that may be the case. I’m thankful we are able to provide what he needs to keep shining his Light to all who meet him—and reminding us of our blessings every single day!
THANK YOU for reading and joining us on this adventure. Just as our journey through extreme prematurity has ebbed and flowed and changed, so have our communication methods. And for those of you who follow this site, please accept my apologies. Many of our TinyBreaths facebook followers have the advantage of seeing the moments that make up our days, weeks and now years with our miracle, and I’ll try to figure out how to integrate that here for our non-facebooking followers. But I will also make a diligent attempt to ensure this site still is a source of hope, inspiration and confirmation for other families, and there is a ton more on my heart that will spill onto these pages in the future.