April 20, 2021
MOST OF THIS POST IS DIRECTLY FROM MY INSTAGRAM UPDATE – incase you missed it.
Our little man had a rough start into the world as he tried making his appearance at 36 weeks & 6 days (they say it’s safe to have a baby at 37) he held out – I was in labor for almost 30 hours after my water broke on April fools day (and no one believed me) lol he had fluid in his lungs, which is pretty normal for being “early” and is originally what landed him an automatic ticket into the NICU. Upon inspection (still in the room directly after birth) they found a fluid sack the size of a golf ball on his lower back. Once they took him, they did X-rays and the NICU doctor came back to let us know he thinks our baby has Spina bifida.
He was going to get an MRI and confirm imaging with a neurologist. Since it was a holiday weekend (Easter) they let us know we would likely have to wait until Monday. Luckily, imaging was done the next day and Monday the specialist looked everything over and confirmed the NICU doctor’s diagnosis. Maverick has meningocele Spina bifida and a tethered cord. We were informed there are 3 types of Spina bifida and his condition is the mild form of the 3. Google will bring you to a really scary place when researching, but our curiosity and wanting to know answers seems to always trump our common sense right?
Let me just tell you – he can move his legs (he is very strong), he had a bowel movement within the first 24 hours and continues to go to the bathroom just fine now. His fluid sack is completely covered by the skin on his lower back.
At first, we couldn’t hold him, they had him on his sides and instructed us to do the same when we got home with him. But we have since seen the neurosurgeon who told us unless he is sitting on pins and needles he is perfectly ok to be on his back and it shouldn’t cause any discomfort.
After meeting with his neurosurgeon she also explained there is no immediate need to operate and wants to wait until he is 6 months to correct his condition. Overall, he should have a normal life. There are potential issues as he grows in concern about the placement of his spinal cord/having bladder issues. But we will cross that bridge when/if we get there. As of now, we are starting on great circumstances and very pleased with his medical team. We know medicine and technology have come so far. The surgery will consist of them going in, draining the fluid, fixing the undeveloped gap that caused the fluid leak, and untethering his spinal cord at the bottom to bring it as close to where is should be as possible.
Overall we have a HEALTHY, happy, sweet baby boy. I already hate the word ‘birth defect’ and will call it a birth difference moving forward because it makes our little man extra special.
Lastly – yes it could have been found in an ultrasound but wasn’t. It is also something that couldn’t have been avoided as the spine is one of the first things to develop in the fetus and happened before I likely even knew I was pregnant. As a woman it was, unfortunately, one of my first thoughts “what did I do wrong” or “how could I have changed this outcome” for any mommas struggling with a similar experience or baby that needs some extra attention, I’m here for you. This experience has been such an eye opening experience to the term that “it takes a village” we are so privileged to have so many friends/families even clients/vendors who have reached out and sent us love, food, gifts, and the kindest most encouraging words we could ask for.
My schedule as I return to work + accommodate this new little being and all of his doctor appointments have been keeping us very busy. When we have any major updates, I will be keeping this space informed with the most up-to-date info. For now, we will meet with the neurosurgeon every month until his surgery, we also have a physical therapy appointment in June to make sure he is developing/hitting all his milestones + we are meeting with the cardiologist for a follow up appointment to make sure a little hole they found his heart is properly closed. During all of this, I completely forgot to even mention it because the doctors ensured us it was normal for an early baby and usually corrects itself.