Jax’s due date was November 20. We should be planning his second birthday party right now. Instead, our micropreemie who was born at 23 weeks gestation has been two-years-old for four months. His birthday (July 27) seems like so long ago.
There is a heavy weight that accompanies turning two. There is a common misconception that preemies should catch up to their peers by the time they are two-years-old. Doctors have told us that; other preemie parents have told us that. We were under the impression that when Jax turned two, his prematurity and the complications that have arisen from it, would be a thing of the past – a blip on our radar. Something that we could forget…
We know now, that is not true, especially for micropreemies like Jax. And while Jax is still doing exceptionally well, he’s not totally caught up yet. He has a language delay (although that is improving by the day), he has sensory issues, he suffers from Chronic Lung Disease.
The reality of this has hit me hard: prematurity will never be something we can get over. We won’t ever be able to forget how much our journey with prematurity has impacted our lives.
November 17 is World Prematurity Day. The day brings awareness of preterm birth and how it effects families around the world. One in eight babies is born prematurely. The more we talk about it, the more we can make a difference!
I asked our friends, family, and followers to ask us anything about prematurity, Jax, or what it is like raising a micropreemie. Here are the answers…
Is prematurity more common in boys than girls?
The World Health Organization released a report in 2012 that indicates that boys are slightly more likely to be born prematurely. There is also an indication that premature males have a higher likelihood of a complicated NICU stay as compared to girls. Generally speaking, premature white males tend to do the worst. This is often referred to as “wimpy white boy syndrome” – this is not a medical term, but a colloquial saying conveying that in the United States white males are statistically more likely to die because of their low birth weight. (Source)
What is Jax’s favorite toy these days?
Jax loves tinkering – he loves building towers with blocks, building forts, and fixing his toys with his screwdriver. He loves music and dancing and likes to play the drums and his toy piano. But his absolute favorite toy is his play kitchen! He loves to cook. And hide in the toy refrigerator. 🙂
What is your most frequent go-to self-care activity?
Self-care – what’s that? Just kidding…kind of. This is something that I have been really struggling with. I have a hard time taking time out just for myself. However, I did start doing pottery again and that has been really fulfilling. I have a couple of hours a week to feel the zen of the pottery wheel and create. It’s been fun, too, to have many of my pieces for sale in a local store and online.
Steve says his favorite way to relax is to play the guitar, but he wishes he had more time to do it. Jax loves it when dada plays guitar – he dances around like a maniac and gets so happy!
What is the hardest part about raising a child who was premature?
For me, the hardest part of raising a micropreemie is always waiting for the other shoe to drop. (My friend calls this crashing waves. Laurie Arnold at The Mighty calls this “continued traumatic stress disorder.”) Statistically speaking, Jax should not be doing this well! I am constantly reminded by doctors and therapists that he is at high risk for issues such as autism, ADHD, sensory integration issues, physical and developmental delays, and learning disabilities. I feel lucky that we are so “plugged in” with professionals who are on the look out for these issues, but sometimes I wish I could bury my head in the sand and forget/ignore all of it.
Steve says the hardest part of raising a preemie is all of the surgeries. Having to watch Jax go under anesthesia so many times has been difficult.
What has been the most surprising thing after discharge from the NICU?
For me, the most surprising thing about raising a micropreemie is the friendships I’ve made with other preemie parents. They just seem to get it, especially the parents of other micropreemies. (Here are links to my favorite preemie blogs.) When I started this blog, I expected to keep our family and friends updated about Jax’s journey. It’s become much more than that – I’ve found a connection with other preemie bloggers that I never knew existed.
For Steve, the most surprising thing about raising a micropreemie is how fast Jax is growing! We were told that Jax would have trouble gaining weight and growing. In fact, Jax was on a modified, high-calorie formula for his first year of life (after he stopped getting breastmilk in the NICU). Jax also had trouble transitioning to solid foods and showed severe oral aversion to textured foods. Thankfully, Jax eats like a champ now and is gaining weight regularly. He’s in the 87% for weight and the 90% for height! Way to grow, buddy!
Thanks for being a part of our story – we appreciate all of your support and love! ❤ If you have more questions, just let us know in the comments!
4 thoughts on “Ask Us Anything In Honor of World Prematurity Day”
Although I have never had children, I have played an integral part of many children’s lives. To follow Baby Jax’s life has been nailbiting. You have been important to many who have children with “extra needs”! Your writing talents are such a blessing. It reminds me of talking with your Mom. So, continue to share your journey with the world because we learn soooo much. Keep being that loving, caring, and understanding parent that you are. Friendship Always……..
Awww….thank you so much. ❤
Where is your pottery for sale?
Well, I had some pieces in a local store, but they are all sold now. (yay!) I have been doing albums on Facebook with pictures of things I have for sale. Are you on Facebook? Find me and then I can make sure you see the next album – which will be coming in a couple of weeks…