Oaklen’s Story
O Warrior Stories
Written by: Samantha Ash
Our pregnancy story is very similar to many stories on here. I won’t spend much time on that part of the journey because what makes our son unique is what is happening to him in the here and now, and how he is handling all of the twists and turns. We are a family of five kids. Oaklen being our fifth kiddo. We’re a blended family, kind of a modern day Brady Bunch, except way more hectic and we definitely don’t have a maid (I wish). Oaklen was our final baby, and our only baby together as a married couple.
We found out about his Omphalocele at our 12 week ultrasound appointment. The tech attempted to casually step out of the room to get the doctor, but we knew something was up. Unfortunately, the doctor had just gone to deliver a baby, so we were left to sit in the ultrasound room for half an hour stressing over what in the heck the tech saw!? When we were finally clued in, I don’t think either one of us quite understood the magnitude of the situation. They ordered bloodwork for us to check for chromosomal abnormalities, referred us to a specialist an hour away, and past that…we were left to draw conclusions from Google. ALWAYS a great idea to do that, right? Ha. So I read, and worried, and stressed. Our bloodwork came back inconclusive after a month of waiting, so I had to have it done again. I waited, and stressed some more. We cried, a lot. Finally, the results came back negative for any other abnormalities. Some good news.
Once we started seeing our specialist, we did an amniocentesis and that was negative as well. Our specialist was actually very supportive and unlike most families, we were never encouraged or told to terminate. I’m thankful for that. We were supported to do what was best for us. So, we took it one day, one step, at a time. As the baby passed each phase of testing, overcame every obstacle of the pregnancy and his development, it became clear, if he was going to fight, we were going to fight! That brings us to..
Oaklen Ash was born on March 21st, 2024 weighing 7 pounds 1 ounce and 19 inches long. He was born at 37 weeks with a giant omphalocele containing intestines, liver, gallbladder, and partial stomach. In fact, at his delivery, the doctors let us know his O was one of, if not the largest, they had seen. In just the short three months Oaklen has been in the hospital, his doctors have successfully shrunk his O down to almost half the size it was at his birth!
That’s not to say it has been an easy process! The creativity it has taken to slowly apply pressure to our sweet boy's omphalacele has always been something we found sort of comical. Something to laugh about amongst all of the stress. We called his O their “arts and crafts project”. Due to the size of his omphalacele, the doctors started out using the chip clip used for most O babies, but quickly realized it wasn’t heavy duty enough to hold! He broke two chip clips during compressions before the doctors decided they needed something stronger. The remaining work done to compress his O was done using extra large binder clips. We laughed that he will probably have a deep hatred for office supplies one day. He has been such a fighter from the beginning and continues to amaze us. The strides he has made in such a short amount of time are so impressive. These babies look so small and fragile, but are stronger than any adult could ever hope to be!
This week, as I am writing this story, we are gearing up for his trach surgery. Oaklen came out breathing on his own, but has small lungs. As things continued, he grew but his lungs didn't, and they pushed on his O which took room away from his lungs, so his little lungs needed more support. We also had an unfortunate scare about a month in where he had choked on spit up from not being able to handle an increase in his feeds and ended up getting pneumonia. That was a scary time, and took quite a while for him to get back on track after that event. Because of several set backs with his little lungs, he needs the pressure support from the vent. Although we are very scared and nervous for his surgery, we know that the trach will give him so much more freedom to wiggle and move like every baby deserves to! As much as it scares us to know our little guy is going into surgery, It’s also exciting to think that we can hold him whenever we want, work on his milestones with him, let him play and move, and (eventually) take him home!
We had our trach surgery meeting last week and the team discussed in detail a plan for Oaklen post-trach surgery. Assuming all goes well, we will begin the process of working on weaning his settings down to a place they feel comfortable enough with to send him to the TCC. The TCC, essentially, is a step down from the NICU. It is a middle ground between the NICU, and going home. At this stage, they’ll work on preparing him to go home, and see if he is able to go home and when. They also work on teaching us, in depth, how to care for him at home. We’ve already been given a large binder of information on a trach and trach care to read, as well as classes we will start taking soon. When it IS time to go home, we’ve also been told that we will need in-home nurses for him to help us monitor and care for him with his trach. Life at home, with Oaklen, will not be easy. He will need trach care, feeding tube care, and care for his O but, we are up for the challenge!
This is only a snapshot of Oaklen’s journey. His story is just getting started. I share this in hopes that someone else reading this is brought comfort knowing that O babies are so strong and resilient, and that the NICU feels like forever…but won’t be forever. That even in those darkest, scariest moments…remember that this too shall pass. I also want to remind you that you are doing amazing! This is NOT easy. Not one single second of it. I don’t expect it to get easier, honestly.. However, I do expect it to get rewarding… Every win means more. One day, I’ll bring my son home. Maybe he’ll get his trach removed (maybe not), but I know I’ll get to watch him thrive. I’ll help him crawl, sit up, walk, talk and do everything I dream of in my head daily with him. One day I’ll look back on these days and think, wow! We have come so far! I’ll hug him, and show him pictures of these moments we’re in right now. So, if you are still at the beginning, or middle of your child’s story…like we are with our son, remember… we’ll look back on this one day while our kids are playing in the yard and it will just be a memory of a time long ago. Stay strong.
