Now, down to the medical side of it. The gap in her spine is unfortunately much higher than we thought. We had anticipated on it being right above/starting at the top of her little butt crack. However, if you look at her back and find the bottom of the back of her ribs, her defect starts just below that level on her spine. This is unfortunate because wherever the open neural tube occurs, from that point and below, nerve damage is done. So the lower down the defect, the better the prognosis, and the location of the defect is much higher than we thought it was.
Her left foot is a club foot, which we already knew, but the degree of it is more severe than what sonograms had shown. The way/direction in which it curves is not as simple as we had thought, and the neurosurgeon informed Joe that we will need to take frequent and extraordinary measures to try and correct it when the time comes. It seems we are definitely looking at multiple surgeries, starting at an unknown time, because it no longer seems realistic to think her foot can be gradually corrected with different sets of braces and casts.
With her left leg having the club foot, you would think that would be the bad leg, however opposite seems to be true. Even with the clubbed foot she was still moving her left foot, left toes, bending her left knee, and rotating/picking up her entire left leg. Her right leg is not as functional. While her right foot is perfectly healthy, and I saw her wiggling her right toes, she is not doing much with her right leg in whole. As I watched her transport team move her around through videos, when she is picked up, she compensates for the movement with her left leg, but allows her right leg to dangle as is. I have not seen her bend her right knee or move the leg substantially from the hip. So, while we thought her left leg was going to be the problem, we are mistaken for the time being.
We also originally thought her myelomeningocele was "closed" meaning the spinal cord and meninges are completely covered and protected by skin, and that skin can be used to healthily close the defect during surgery. However, Mira's turned out not to be closed in a way. The cord and meninges are not just hanging out of her back, so no leaking is occurring, BUT, the membrane covering the defect is just that, a very small, weak, unusable membrane that isn't really classified as skin, and does not protect the tissue beneath it like skin would. This causes the already high risk of infection to go way up, so they are now moving her surgery to this morning, Thursday, instead of Friday morning. There is now NO way I'll get to be there, but there was little chance before, as well. I just hope the sac stays closed, no leaking occurs, and infection does not take place. I am also curious because in order to close her back, they need to leave extra skin over the area of her incision so that as she grows, and it heals, the extra skin can stretch and heal properly instead of tugging and pulling. With the membrane covering her defect being so weak and unusable, I have no idea where they are getting the extra skin to close her back properly that will compensate and allow for healing without tugging complications to the incision. So I guess that's another thing I will find out tomorrow, hopefully!
Her hydrocephalus is progressing rapidly, so the surgeons are unsure as to how they are going to compensate for that. They had originally planned on putting a temporary drainage tube in her head, operating on her back, and then a few days later going back in and operating to put in her shunt. Now they are debating on whether or not the shunt is more urgent than that because of the severity of it, which they were able to find out about more in depth today during pre-op testing, so they may place the shunt while they are operating on her back at the same time. I guess I will find out what they decide tomorrow.
Her arms certainly are strong, though! Ive been able to observe her through the videos Tammy took on her phone while I was in recovery, before Mira was taken to Children's, because as mentioned before, I've only seen her in person for a total of a minute and a half. She is already doing a fantastic job at grabbing things. They have a little blue board attached to her arm and hand to keep her from damaging her injection sight, and she was waving that thing all around! Grabbing ahold of it with her other hand, and back and forth. She lifts the whole contraption right up, lifts her arm up in the air, and ends up looking like she's talking on a blue telephone (which also reminds me of Aryanna). She was moving her head quite a bit to try and guide her pacifier back into her mouth, using the blue board to her advantage like a paddle (so she's smart too) and I wonder if, like our other children, she would be able to pick her head up on her own during her first day of life or not. But I didn't get to see her held or lifted upright at all, so I won't get to know that for sure. She certainly looks strong enough for it in that area of her body, though!
So, many aspects of her defects were not what we hoped, and ending up being more severe than we had anticipated. However, nothing is really final at this point, and all we are looking at is a very long road of uncertainty and possibilities to maybe make things better. So we'll take this one step at a time, starting with her surgery or surgeries tomorrow! So I believe that I covered everything new that I know about Mira and her health, and I will continue to keep everyone as posted as possible! We love you all, and the prayers, birthday wishes, and even just your kind thoughts are very heart warming! Much love to all of you and thank you again! Happy birthday, Mira! I couldn't be more thrilled to share this day with you for the rest of our lives! Mommy loves you and misses you so much!
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