Ever since Jax’s birth, I feel like I’ve been running a marathon. There are reasons why I hate running – I have to wear three sports bras and I usually only make it a block. My arms and legs are flailing, my heart is racing, my mind is jumbled and confused, and I can’t stop to rest.
But three months ago, it was finally starting to let up a little. The marathon was coming to an end – I could see the finish line. I let my guard down a little. Would we actually get to live a normal life? One where Jax didn’t have to struggle to breathe? Where he could play with his cousins all winter long without fear of being hospitalized because of respiratory infections? Where I could stop being a medical case worker and finally start to focus on me again?
I made plans to go back to work part-time. Jax started daycare. It was the beginning of our new, normal life. One that didn’t include 4 doctors appointments a week with 7 different specialists.
WHAM! And then we got the brain tumor diagnosis. It slapped us on the face. Hard.
And now, instead of reaching for that finish-line, we’re running head first into another back-to-back marathon.
And if the last two years have been a marathon, then this week will be like a sprint within the marathon (runner people, is there a word for that?).
On Monday, we have an appointment with pulmonology. The outcome of this appointment will dictate how we live for the next 7 months during cold and flu season. Will Jax be put back on daily steroids and Singluair? How will our Respiratory Action Plan change? Will we hear the devastating words “you will have a third year of isolation restrictions?” I don’t know if I will be able to make it through another winter of isolation.
On Tuesday, Jax sees his speech therapist. On Wednesday, he has the pre-op appointment. On Thursday he will go to daycare. This will be good for me because I will use the day to pack and prepare myself mentally for the brain MRI and hypospadias surgery on Friday morning.
I let myself “go there” last night. I’ve been doing an ok job of squashing “what if” out of my vocabulary – but there it was – loud and clear. What if the tumor has grown? Jax will be under anesthesia for 4 hours – the risks of that alone are scary. He will have major surgery to repair his hypospadias, he will spend the night in the hospital, and have a stent for 9 days following surgery.
I’d better buy a new pair of running shoes…
7 thoughts on “How Raising a Micro Preemie is Like Running a Marathon (And I Hate Running)”
Good luck, mama. We’re cheering you on!
It is totally a marathon!!! I don’t think I’ve ever commented, but I have two ‘typical’ kids and a 23 weeker who just turned 1. We are in the thick of it with delays and therapy and now a nasty respiratory virus, and headed back to the doctor (and possibly hospital) today. Ick. Cold and flu season started early here… I hope your appointments go as well as possible! Hugs and prayers!
Oh no – so sorry to hear about the sickness. Boo!! Does your 23 weeker have CLD? It must be so difficult to balance all the therapy and appointments with three kids. Big hugs to you mama. Thanks for stopping by! I’ll be sending all kinds of positive thoughts that you do not have to be admitted.
Yes, he does have CLD. He just got off oxygen right before his 1st birthday (a month and a half ago). He didn’t end up having to be admitted. Just more steroids and more albuterol! He is lots better now, but we are going to finish the steroids and keep up with the albuterol for a couple more days. I hope surgery goes well tomorrow!
Hooray for getting off of O2 – that’s huge. CLD sucks – there’s no nice way to say it. I hope he’s feeling better already!!