On another note...

I just glanced over the blog and realized that I haven't really included much of the emotional side of things. I've given lots of updates and information, but not a lot of reflection.

Something that's been on my mind today, is all the doctoring and opinions that we've been given. It has been a roller coaster of information and therefore emotion, that's for sure. We've had a lot of appointments bring us ups and downs, a lot of bad news that turned out to be just bad advice, and a lot of good news, and some surprising bad news. I've really learned from all of this, that not all doctors that give you information, should be. Neurosurgeons know a ton about Spina Bifida, and physiotherapists, and occupational therapists know a ton also. But perinatologists don't know near as much, and obstetricians know next to nothing. But unfortunately, this doesn't keep them from dispensing information that at the time, you might perceive as truth. I had researched a lot before I met with my OB, and found out that several people in our circle actually have first hand experience with SB, so I knew that with our son's lesion being located low down, that there was a good chance that he'd walk. But when I met with my OB, she told me that he'd never walk, he'd always be in a wheelchair, that he'd have organ dysfunction. These are all things that are true of some people with Spina Bifida, but certainly not all, and I'd hazard to say, not even most. Because I was skeptical of her information, I didn't take it completely to heart, but we were still quite upset by it, since we had been informed differently by the perinatologists. Thankfully though, we had our appointment at the Maternal Fetal Health Centre the next day, and we told them what she had said to us. They were very taken aback and took us into a consult room to sort out fact and fiction. It was very helpful. However, when we met with our son's neurosurgeon the next week, even more pieces of information were dispelled as fiction. Some were very good, like the possibility of our son only needing a heel and ankle cup insert in his shoe to be able to walk. (time will tell, but how wonderful to hear a that a dr. has this hope!). But he also had to give us the bad news that the Mat/Fet Clinic was wrong about him having the moderate form of Spina Bifida. This was a hard day, for a couple reasons. I cried for our son that day. The first time since our diagnosis. I've cried over other things, like how others weren't being supportive of us being at peace with the diagnosis. But that was the first day that I cried for our baby. It was not out of pity or feeling sorry for him. It was out of the finality that came with the neurosurgeon's words. As much as we're ok with our son's diagnosis of SB, we were still praying for the absolute best case scenario. And having been told that our son had the less severe form of SB, just menigocele, then hearing the word "myelo" in front of meningocele, was surprising. This is why, I'll really only take our neurosurgeon's word for anything from this point on. If anyone tries to give me information that's different, I'll just give his office a call and ask if he can offer his opinion. Also, I trust him because he's on our son's side, just like we are. When friends and family are pitying and feeling sorry for our son or for us (and justifying it with "it's sad that he won't be normal and will have trouble"), we're feeling hopeful of what he CAN do, and the wonderful journey that our family is going to take together for him. Dr. Aronyk is with us in that pursuit, even encouraging us to bring our daughter to his PT and OT sessions, and dr. visits. He's my third favorite man on the planet right now. (if you're wondering who's 1 & 2, well of course it's my husband and our little son).

One blessing that came from getting the wrong information though, is that after getting a terrible sounding  prognosis, then hearing a better one, it sure makes you grateful for it! We were totally relieved that it might be SB, and were hoping that that's "all" it was! I think our nurse practitioner thought I was crazy when she told me over the phone that the MRI results were in, and that there was a confirmed diagnosis of SB. I actually said "Oh good!" and after she didn't say anything, I said "we were told our baby was missing brain elements, and that he'd die, so to us, SB is soooo doable!". Although she's very nice, I think she still thinks we're a bit nutso. Oh well.

I've been looking over other parent's blogs, and through a SB forum, and have found some wonderful stories, parents and kids, and I just relate to their positivity and joy so much. I actually am starting to believe that God chose us to be this little guy's mommy and daddy, because He knew that we'd love and adore and fight for him without question, without bitterness, without anger, and with complete abandon. Even with me being on 6000 micrograms of folic acid (recommended dose is 400), and therefore SB really not making a whole lot of sense, we're soooo not angry with God. I don't even question God in this. I know that God didn't give our son SB. It's more like this little boy got SB, and God placed him in my tummy for a reason. But God doesn't hand out diseases like some kind of sick puppet master. God is loving, caring, merciful, and sacrificial for His people. But we live in a sinful world, bound for death, but He didn't originally design it that way. Adam and Eve didn't have diseases. They didn't even get colds I bet! It was when sin entered the world, so did death, disease, injustice, deceit, etc. God didn't DO this to our little boy. God's part in this is that He's walking beside our son, beside us, rejoicing with us when we rejoice, sometimes lifting us up, carrying us and hiding us under His protective wing. He's WITH US through this. How could I blame Him, or be angry at Him for that?

I'll leave you with this. It's a post that I read on a forum today, and it brought me to tears. It was in response to a woman who's unborn babe had just be diagnosed with SB, and had been given a death sentence. Like most parents of SB kids, we too were given the option and asked repeatedly if we wanted to terminate our little boy's life. They were even willing to extend the legal time limit for us, as we had already passed it. So quotes like this really get me.

"As for spina bifida, it's not as terrible as most doctors portray it to be, and anyone who says my 2 year old's quality of life is bad has never heard his belly laugh."

--

Answers!

We've received the results from all of our testing. Our baby has been diagnosed with Spina Bifida and Chiari II Malformation (pronounced kee-ar-ee). So far what we've been told is that he will have a moderate form of Spina Bifida, called meningocele.  In this type of Spina Bifida, the nerve elements do not extend outside of the spine, which is very good news as far as mobility goes. We still have to wait for the Neurosurgeon's opinion about whether it's for sure this form of Spina Bifida though. And we won't know exactly what our baby boy's mobility will be until he's born. The prognosis for mobility of this type of Spina Bifida is a huge range, from anywhere between having no nerve damage, to paralysis and organ dysfunction. Paralysis is rare with this form, but still a possibility. The Chiari II Malformation is a brain condition, and is a side effect of the Spina Bifida. It also has a huge range of outcomes, and we won't know how this will affect him until much later on. Sometimes with very successful surgery for the Spina Bifida, the Chiari II Malformation resolves and becomes less severe. We will learn more about our baby's individual prognosis, as far as mobility goes, when we meet with his Neurosurgeon next week, we'll just have to wait and see. 

We are doing quite well with the news. The Lord has given us much, much peace. We understand that Spina Bifida is a serious condition, and that he'll have surgery almost right away after being born, that he'll be in the NICU for a few weeks, and that there is always a chance of things going much worse than they suspect at this point. However, we are so very grateful, and so relieved that our baby has completely normal chances for survival.  And we are extremely hopeful that he will have as normal a life as possible, even if it involves a wheelchair. This diagnosis is so much better than what we were initially told to be prepared for, as we spent those initial days thinking that our baby wouldn't survive more than a few hours after being born. Praise the Lord for saving our baby! 

Some more of our praises:

-Praise the Lord that our baby's neural surgeon is among the best in the world! We've been told that our baby has the best chance for mobility because this specific doctor will be operating on him. 

-Spina Bifida babies usually have hydrocephalus, which is fluid on the brain, and is quite serious. Our baby has none! Praise the Lord!  

-Praise the Lord that baby turned around and showed part of his face and his entire head for the ultrasound yesterday! They had suspected a cleft palate, but now think not. One less surgery to be done! They also suspected a small head size, which is bad, but now that he's shown his whole head, they've seen that it's a normal size!

-Praise the Lord that the baby is otherwise healthy, and that I'm healthy, so chances of a pre-mature birth are very low.  

-Praise the Lord for carrying us during this time. We have had so much peace throughout this, and we know it's from the Lord. It truly surpasses all understanding. Even our own! We are so thankful for that for many reasons, one of which is that it has given us the freedom to fully love, adore and anticipate our baby boy, instead of fearing what's to come. I'm more excited for him to be born, to meet him, and hold him now than I was even a month ago when we thought everything was normal! 

Our current prayer needs:

-Hydrocephalus usually sets in by now, but it can set in later. Hydrocephalus can be very bad, so please pray that this doesn't happen.

-Pray that his spinal cord is well protected, and for the least amount of nerve damage possible to take place.

-Pray that the Chiari II Malformation goes away. There is a chance that if the surgery after he's born is very successful, that the Chiari II can resolve. 

-Pray that the baby would stay put and that he wouldn't try to make an early appearance! His best chances rely on a long pregnancy. 

-Pray for God's continued peace and sustaining power to guide and lead us.