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."

--

Finally, someone has put words to how I feel

I found this wonderful blog post, and it's exactly how I feel (except the part about butterflies, since they scare me stupid).

The peace we've been given by God is REAL, it is not a show, it is not a rouse because we're a ministry family. We give all the glory for being able to go through this with hope, peace, comfort and joy, to GOD and GOD alone. It is not by our strength, and that's why it doesn't make sense to the world. It is not because we have been hiding our real feelings, and it is not because we are deluded or naive about what's to come. We love our baby boy, and we are excited for his life. Come what may, that doesn't change.

Here's the link, and just in case, the text also:
http://www.aworthyjourney.com/2008/12/god-gave-me-butterflies.html

I truly believe that God talks to us all the time if we just take the time to listen.  After I found out about Madi's diagnosis, I decided that I wasn't going to cry or be sad for her.  She was strong and God chose her for a reason, just as he chose me as her mother, David as her father, and Conner as her brother.  I knew that we could do this and our job wasn't to mourn, but to fight for her and give her the best life possible.  I knew it would all be ok, and God wanted to make sure that I knew He was beside us fighting for us, working out all the details, and paving the way for us.  I've always loved butterflies, which, of course, He knows.  From the day that I found out that Madi had spina bifida until the day that she was delivered, He sent me butterflies.  Every single day, no matter what the weather, I saw at least one butterfly.  They were my reminder that we could get through this and that everything would be ok.  Just as a butterfly, we would learn to adapt to change and life would be beautiful!  

Consult with the Neurosurgeon

We had our meeting with our baby's neurosurgeon yesterday. He's an expert on Spina Bifida, not only for surgery, but for lifelong care. So we got pretty much all our questions answered, and then some. 

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. 

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. 

Roller Coaster

We have our appointment tomorrow afternoon to find out the full MRI results. I cannot explain how badly I want 1:45 pm tomorrow to come.

We got the initial results yesterday, from our nurse practitioner, who said that there is indeed a defect on the spine, however, there are no nerves that are coming outside of the spine. As far as Spina Bifida goes, that's great news. She said "that's a very good thing regarding mobility". (There are 3 types of Spina Bifida, and the type where the nerves do NOT go outside of the spine is much less severe compared to when the nerves do go outside). So although we were sad to have Spina Bifida confirmed, we were pretty encouraged that our baby would maybe have a fair amount of mobility. We did though take it with a grain of salt, since we knew that the results we got from her wouldn't be the full results, and that she'd leave the prognosis to the doctor later on. But we still felt fairly encouraged.

But then I had a routine appointment with my OB, who had received the results as well. She told me that the part that's affected is very large, and is high enough on the back that it means that our child will never walk,  and that I'll even stop feeling fetal movement as the pregnancy progresses.

Our minds are just spinning. From such promising news to such sad news in less than 24 hours, I just don't know what to think or how to feel. What I do know is that I love this little guy so much already, and it's totally not dependent on if he's in a wheel chair or not. I will love and adore him and do whatever is necessary for him to experience life to it's fullest. He will not hear the words "You can't" from me. But knowing that so many things will be a struggle for him, and that he'll be labeled and judged and mistreated by others, it breaks my heart. The things I wish for and pray for most for our daughter and our unborn child are that they would be healthy, happy and that they would love and know the Lord. I know those things are out of our hands, but actually having a child with such a serious disorder, well, it's just a totally different reality. 

I just so want our appointment tomorrow to come so we can get some for sure answers. I mean, we won't really know for sure until he's born, but I'd love to be able to get a better handle on the range of possibilities.  

More Testing

Since we first found out that our baby would have special needs, we were given an appointment at a Maternal Fetal Health Clinic at the Royal Alex Hospital, for the very next Tuesday. At this appointment we had 3 tests done, another ultrasound, an amniocentesis, and an MRI. We will get results from the amnio and the MRI this Friday and next week. We were able to find out from the ultrasound though, that there is a cerebellum, it's just not a normal shape, and it's displaced.

The perinatologist that we saw suggested that this is indicative of Spina Bifida, and mentioned that she could see a fuzzy patch on the spine, very low. Spina Bifida is a serious condition, but the lower the affected area on the spine, the better. She said that it's low enough that it wouldn't impede mobility. However, coming from a place where we were expecting things like Anencephaly, or severe Cerebral Palsy, this was actually good news.

She also mentioned though, that 5-10% of babies with Spina Bifida, also have Down's syndrome. She did also say this would be like lightning striking twice, and is rare.

Another thing they found on the ultrasound was that the baby probably has a cleft palate, which can be a marker for Trisomy 18 (and Trisomy 13 I found out later). These are very serious chromosomal defects, and not compatible with life outside of the womb. These conditions, and Down's Syndrome (Trisomy 21), are not detectable on an ultrasound or an MRI, only an amniocentesis can detect these.

We felt that because we already knew that our baby was going to have special needs, we also wanted to know ahead of time if our baby was going to pass away shortly after birth. So we went ahead with an amniocentesis. The procedure does carry a risk of miscarriage, or pre-term labor if mom is further along like I am, (and it hurts I might add!), but we felt that God had upheld this baby this far, and we're confident that he won't let a test take our baby out of his will.

After the amnio was finished, our doctor counselled us for quite awhile about the markers and reasons she suspects Spina Bifida, and we also asked a lot of questions about this and what else it could be. We felt very supported, very understood and very cared for. This was such a relief, because in the past, I have experienced terrible health care practices regarding pregnancy complications, and we've had a few extremely frustrating experiences with health care related to Allison also. So a recurrence of that was actually something we prayed against. So a big praise the Lord went out for that one!

She also offered us the opportunity to terminate our pregnancy, which we immediately turned down. She then asked very specific questions about different situations in which we may be asked to reconsider our decision, such as if our baby had Trisomy 13 or 18 and if I became very ill and needed to not be pregnant anymore for my own survival. I still said no, and the doctor said "you have a little one at home though to think about". That's when I broke down and cried. I've never thought of that situation before, so I thought I knew how I felt about termination. It's always been an adamant "NO, NEVER" answer with us. But the reality of the situation really sunk in at that moment, that if our baby had a condition that wouldn't allow him or her to live after it's born, that I might have to let him or her die earlier to save myself.

This whole situation is something we never could have ever imagined, and even if we did, it's so different going through it personally than thinking of the "what ifs" before hand. I will never ever take health for granted ever again. That includes physical, mental and emotional health.

The Beginning of the Journey

To begin telling our story, I think it's best to paste the first email that we sent out to our very close family and friends, informing them of what had happened and asking them for prayer.

Dated Wednesday, June 29, 2011, here it is in it's entirety:

Hi everyone,

We had an ultrasound of the baby today, and received some very bad news. Baby is missing a part of the brain, called the cerebellum, and possibly more areas. Baby's position today didn't allow for any insight into how much more of the brain is missing. We're being referred to a high risk perinatal clinic and will get more testing done to better understand the extent of baby's condition. This will include more ultrasounds and an MRI.

We're still not sure what this all means, but these upcoming tests and appointments will hopefully give us a lot more answers. However, our obstetrician gave us a very sad prognosis. She said that without the cerebellum, baby won't be able to move. If there is more of the brain missing, baby will most likely not survive very long after birth.

We are completely heartbroken. We are praying for a miracle, and covet your prayers for this also. We serve a powerful, mighty and merciful God, that is very capable of performing miracles. Please also pray for peace for us, as our minds are swirling right now and we are in a lot of shock. Pray also for us to get an appointment at the perinatal clinic really soon, as we were told to expect an appointment in 2 weeks, but we have a lot of questions that we would like answered sooner than that.

Thank you so much.

Andrea and Justin