"Normally, during the first month of a pregnancy, the two sides of the spine (or backbone) join together to cover the spinal cord, spinal nerves and meninges (the tissues covering the spinal cord). Spina bifida refers to any birth defect involving incomplete closure of the spine.
Myelomeningocele is the most common type of spina bifida. It is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back." Info taken from here.
While there have been great advancements in treating MM with fetal surgery, the standard of care for babies with spina bifida is repair at birth. To hear a surgeon talk about the MM closure is like receiving the recipe for a seven layer salad. I know that sounds really bizarre for me to compare Henry's surgery to a salad recipe but it's the only way I know to describe it. They are literally, for 2-3 hours, putting each layer of his spinal cord, meninges, the skin, etc. back in place.
The precision and execution of this surgery makes my brain hurt but I am so thankful that Henry has one of the best Neurosurgery teams in the country operating on him. I am sure if any medical expert were to read this blog they would be ashamed of the way I describe the MM closer but I am not a doctor, I am a mom and it's enough on any given day for me to remember how to even pronounce Myelomeningocele, let alone describe how Henry's neurosurgeon was putting his spinal cord back together.
Henry had his first surgery while I was still recovering from the c-section at a hospital that was a good 5 minute drive away. I guess waiting is waiting but it felt really bizarre to be so far away from your child during such an important time but later that evening I was given a pass and was able to see Henry for the first time since delivery. I never actually got to see first hand the opening in Henry's back but seeing it closed seemed like no big deal. He is now 8 days post-op from the closure procedure and he has only been able to lay on his stomach or side which makes holding him and feeding him a tad bit challenging, but we have managed.
His incision seems smaller and smaller every day. I look at it now and wonder what it will mean to Henry when he is old enough to understand all of this, but looking at it now by his bedside I am not sure it will be something that ever define who Henry is. If I have learned anything about spina bifida in the last 20 weeks of waiting to meet Henry it is that nothing is off limits. Doctors will place limits on his ability based off their experience but it takes just one wiggle of Henry's toes for those limits to have already been shattered.
Doctors have been encouraged at how quickly Henry has healed from the closure procedure and they are thrilled that he is eating upwards of 90ML (4oz) at every feeding which makes his doctors chuckle. Henry is not a young man who wants to miss a mea--he is about 3 times the size of most his neighbors in the NICU.
"As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him." 2 Samuel 22:31
Daily I find myself taking refuge in the word of Lord because sometimes the hospital words are long and the terminology is over my head and the monitors beep numbers I don't understand but I am always reminded that the Lord's way is a perfect one and for that I am grateful.
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| Henry holding on to his paci and his zebra friend. |
After reading this I am all the more eager to meet my little chunky monkey and someday hear him say "grampa." (hmm. something just got in both eyes at the same time and is making them water my cheeks)
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