At 3:00 Ava had her MRI and afterwards we met with the neurologist and neurosurgeon to discuss the results.
Ava's hydrocephalus is moderate but stable. Amazingly, it was not caused by a hemorrhage, but rather is the result of a congenital malformation (part of her brain didn't form properly so she has aqueductal stinosis) and based on her size (5 lbs 3oz) and age (35 weeks gestation), the best option is for her to have surgery to insert a shunt which will drain the excess fluid into her abdomen for reabsorption.
The good news is, the surgery is considered "routine". Based on her symptoms the fluid probably started collecting within the last few weeks and thanks to a notoriously meticulous attending, we caught it early. As a result, according to the neurologist, so far her brain is "squished but not damaged". In the best case scenario, the shunt should solve the problem, allow her to develop normally, wouldn't interfere with her trajectory for discharge and could last the rest of her life. Obviously, that's what we are praying for!
Statistically speaking though, the chances of all those things happening are not high. (Here's where we're praying for a miracle!) There is a risk of infection and bleeding with the surgery. Then, 30% of kiddos need additional surgeries in the first year to fix problems with the shunt (malfunction or infection) and most shunt recipients need multiple (5 or 6) surgeries before they turn 18. So it's kinda like saying "we can save your life, but we'll need to cut off your foot." As you can imagine, we're really heartbroken that this is happening to our sweet one.
Yet, even as we were overwhelmed and exhausted and trying to wrap our brains around the reality that this is happening to us...God gave us a wonderful gift...we realized again just how miraculous Ava's life is:
Remember, Ava was born early because of my sub-chorionic hemorrhage and the resulting placental abruption, not anything to do with her health.
If my pregnancy had been normal (oh how we prayed for that!), and I had gone to full term, we wouldn't have detected any problems on her 22wk ultrasound, and she would have been born with hydrocephalus which had been putting pressure on her brain for 6 weeks!!
Instead, because my body "gave out", she's here, otherwise perfectly healthy, and we can give her the surgery she needs before her brain is affected...Amazing.
God sure went to a lot of trouble to get Ava into the world at the right time. How could we not trust Him to care for her every day of her life?
Ava's hydrocephalus is moderate but stable. Amazingly, it was not caused by a hemorrhage, but rather is the result of a congenital malformation (part of her brain didn't form properly so she has aqueductal stinosis) and based on her size (5 lbs 3oz) and age (35 weeks gestation), the best option is for her to have surgery to insert a shunt which will drain the excess fluid into her abdomen for reabsorption.
The good news is, the surgery is considered "routine". Based on her symptoms the fluid probably started collecting within the last few weeks and thanks to a notoriously meticulous attending, we caught it early. As a result, according to the neurologist, so far her brain is "squished but not damaged". In the best case scenario, the shunt should solve the problem, allow her to develop normally, wouldn't interfere with her trajectory for discharge and could last the rest of her life. Obviously, that's what we are praying for!
Statistically speaking though, the chances of all those things happening are not high. (Here's where we're praying for a miracle!) There is a risk of infection and bleeding with the surgery. Then, 30% of kiddos need additional surgeries in the first year to fix problems with the shunt (malfunction or infection) and most shunt recipients need multiple (5 or 6) surgeries before they turn 18. So it's kinda like saying "we can save your life, but we'll need to cut off your foot." As you can imagine, we're really heartbroken that this is happening to our sweet one.
Yet, even as we were overwhelmed and exhausted and trying to wrap our brains around the reality that this is happening to us...God gave us a wonderful gift...we realized again just how miraculous Ava's life is:
Remember, Ava was born early because of my sub-chorionic hemorrhage and the resulting placental abruption, not anything to do with her health.
If my pregnancy had been normal (oh how we prayed for that!), and I had gone to full term, we wouldn't have detected any problems on her 22wk ultrasound, and she would have been born with hydrocephalus which had been putting pressure on her brain for 6 weeks!!
Instead, because my body "gave out", she's here, otherwise perfectly healthy, and we can give her the surgery she needs before her brain is affected...Amazing.
God sure went to a lot of trouble to get Ava into the world at the right time. How could we not trust Him to care for her every day of her life?
thanks for the update, even with mixed news. obviously, god has some plans for little ava and i am sure she will sail through the surgery like a champ. you guys will be in my prayers! i so admire your strength you present, though i am sure you don't feel so strong. hang in there..
ReplyDeletejana
Well, like you said, He's already shown that He's got our problems well in-hand, so we'll trust Him to use this shunt in a miraculous way as well. Been praying for you guys a lot, and I know God hears. Hope you're feeling it.
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