He told us that our baby does in fact have the severe form of Spina Bifida, not the moderate form as we were first told by the perinatologists. However, because the section of the back that is affected is low, the prognosis for mobility is still fairly good. We were told that he will need braces, splints or crutches for sure, but most likely not a wheel chair. At least not anytime soon. He let us know that the type of hole in the back is a bit different than usual, and is going to make for a tricky recovery from surgery, and that with holes like our baby's, he often sees babies needing longer observation in the NICU and often additional surgeries to make sure the incision stays closed and clean. So he asked us to be prepared for a 4 week hospital stay.
He also told us that the Chiari Malformation is classified as a 2, which has potential to be pretty bad, but the shape of the malformation looks like it's on the good side of a 2, not the bad side. He told us that Chiari is very unpredictable, and that even when it looks good on an MRI, there is still a risk of severe and life threatening complications, but that risk is very low. He asked us to not worry about it, since the risk is very low, but to have it in the far back of our minds just in case it happens. He also mentioned that the rest of the brain looks really good, as far as learning, school, personality etc. That there's a high level of brain development for this age, and he expects baby to have completely normal cognitive ability.
It's a lot to take in, as this is the final word on our little guy's prognosis until he's born. Along with the praises and prayer requests from our last email, here are yet more:
Our praises are:
-This doctor thinks it's highly unlikely that hydrocephalus would set in at this stage. This is so good, as shunt surgeries and complications are lifelong.
-Praise the Lord that the spot on baby's back is lower than first anticipated, exposing only the sacral area of the spine. With Spina Bifida, the lower the affected area, the better.
-This is the doc that had the final word on how I'd deliver the baby, and he thinks I should be fine to have a normal delivery, no c-section required. This will help the baby be prepared for surgery sooner, and for me to be able to drive over to the Stollery sooner to be with him too. (I'll deliver at the Royal Alex)
-Praise the Lord that the baby's movements are getting stronger and stronger, it's just so cool, in the midst of mobility issues, to feel him turn and kick SO HARD! Although I am feeling a bit like a punching bag!
Our prayer requests at this time are:
-Although it's a ways off, we'd like prayer for baby's delivery and surgery to go well, and for baby to heal and recover safely, and quickly. (I guess also for me to recover from delivery quickly too, so that I can be with baby asap.)
-For Dr. Aronyk to be the one on call at the time of my delivery. He's the best neurosurgeon at the Stollery, but found out yesterday that they work on call just like other doctors. Please pray that he's on call at the time our little guy needs surgery.
-For the Chiari Malformation to not cause any severe symptoms.
-For hydrocelphalus to not set in now, or even after he's born. This will not only prevent a shunt from being needed, but will drastically improve the baby's recovery and chances of only needing one visit to the O.R. for neurosurgery.
-For baby to have great mobility. We'll know within the first few months, based on how much he can wiggle those little baby toes, as to what his mobility will look like.
-For guidance about logistics for November, which is Justin's busiest month of the year due to the Youth Banquet. I'm due on Nov 1st, and with a 4 week expected hospital stay at the Stollery, it's going to be quite the juggling act.
-And for God to continue to grant us his peace, comfort and hope.
At this point, it's a waiting game until little Mr. Morris makes his arrival. We'll have a team meeting for everyone involved in his and my care sometime in Sept, but other than that, I'll just be going to the Maternal Fetal Heath Clinic every 2 weeks for a routine ultrasound to make sure baby is stable.
It was tough yesterday being at the Stollery. We were there with Allie for multiple tests and appointments when she was 4 months old, then again for a gash on her lip when she was almost 2, then again for the "seizure" stuff and EEG this spring. Each time, I saw really really sick babes and kids, and it just broke my heart. And it made me so grateful to have a well child. So yesterday, walking through the Stollery, it hit me that we are now expecting one of the really sick kids. And it made me sad for our little guy. Not that I'm not doing well, or dealing with it any differently, but yesterday, I was really sad for him. I'm doing better today, much better. I think yesterday was an adjustment day, with this surgeon giving us what's really the final word until little mister arrives.
I am so thankful that in a situation that is so totally out of our hands, that we have the ability to tap into the power of the one who knit this little guy together. That is such a huge privilege, and we are humbled and so grateful that so many others have joined in on this prayer journey with us.
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