We had just become used to the idea of being pregnant, now we had to get used to the idea of being parents!
I went into labor unexpectedly when I was 23 weeks 3 days pregnant. Our micro-preemie, Jaxson, was born 17 weeks early on July 27, 2012 at 5:16 pm. He weighed 1lb 8oz and was 11 3/4 inches long. Jax came home from the hospital after 93 days in the NICU – almost a full month before his due date of November 20.
Jax came home from the hospital on oxygen, but after a month and a half, he passed his sleep study and proved that he was ready to come off. He had aggressive Retinapothy of Prematurity (ROP) in both eyes which required Avastin injections and laser surgery, hypospadias, double inguinal hernia (which required surgery) and an umbilical hernia. He suffers from Chronic Lung Disease. His pediatrician said: “Only a few 23 weekers have ever survived and only a couple have ever done as well as Jax!” We are so thankful for his strength! The doctor called him a “superhero” – we love having a superhero as a son!
In an alternate universe, I was a Communications Manager at a national non-profit education organization. After lots of back and forth wavering, I decided to quit my job of 13 years to take care of Jaxson full time. Being a stay-at-home mom for a micro-preemie is the hardest job I’ve ever done!
My awesome husband (who just happens be be my best friend, my favorite singer, and my sunshine) works hard to provide for our family by scaling buildings and welding them together. When we first met, he assured me that he was a “steel erector” (imagine a sly twinkle) and I assured him that I was afraid of heights. We have a don’t ask, don’t tell agreement about how many stories high he works every day.
We love traveling, gardening, live music, and spending time with our family.
This blog is a way for us to chronicle Jaxson’s journey. I hope it helps other parents who are going through similar situations with their babies. Now that Jaxson is a full-fledged toddler, the scariness of his traumatic birth and NICU stay is slowly fading away. I’m left with an incredible sense of awe and gratitude as I watch him do all the things doctors said he would never do.
Two weeks before Jax’s second birthday, he was diagnosed with a brain tumor totally unrelated to his prematurity. You can believe that we felt angry and scared and frankly, we didn’t understand why our boy had to fight so hard to survive the NICU only to be dealt another huge obstacle. Thankfully, the tumor stayed stable and we did not have to do any treatment. Jax has regular MRIs to monitor the tumor.
We have a blast every single day! You’ll see posts that make you laugh, and ones that will make you cry. I’ll also throw in a couple of Jax-approved recipes! Thanks for hanging out with us – we can’t wait to “meet” you!
Jaxson’s NICU Highlights
- Number of days on oxygen support: 34 days on ventilator, SiPap and CPAP for 16 days, high-flow oxygen for 13 days, and low-flow oxygen for 71 days
- “Accidental” extubations: 4
- Number of blood transfusions: 6
- Age he was first held: 13 days
- Age of first Kangaroo Care: 14 days
- PDA: Large, resolved with Tylenol treatment
- ROP: aggressive and severe in both eyes which required Avastin injections and laser surgery
- Double inguinal hernia: humongous – surgery for sure
- Hypospadias: yep – surgery was intense
- Brain bleeds: NONE
- Age of first “recreational feeding“: 30 weeks gestation
- Number of Guardian Angels: 3 (at least)
- Total number of days in the NICU: 93
Read Jax’s Birth Story.
You can read posts from Jax’s NICU stay on his Care Pages site at: www.carepages.com/carepages/JaxMully.