This little man sure likes to keep us on our toes... Last week I had soem bleeding which of course sent Brandon and I into a slight panic and a trip to the hospital at 1am. After bloodwork and tests and being hooked up, they determined that Gage was fine, and sent me home. Yesterday I get a call from the hospital saying I had to come back, that there were some concerns with my bloodwork. Turns out that there are small traces of Gage's blood in with mine (I am a negative blood type, so this can be damaging to the baby and future pregnancies) so I had to get another Rhogam shot in the hip followed by more bloodwork. Here is hoping that the shot does it's job. If it's not one thing it is another with this darn pregnancy! One good thing came from this though, the doc finally agreed to do ultrasounds every 2 weeks from now until I deliver to be safe. YAY! Finally, some common sense and peace of mind. On that note, it also appears as though Gage has flipped (head down), DARN!!! I was hoping he would stay breech and then they would have to scedule a section. Oh well, Gage is making the rules and will make his appearance however he feels most comfortable I guess :)
In the last couple weeks, I have also come to accept that nothing is predictable in this pregnancy. I can not follow guidelines, or "what to expect when you're expecting"... No where in my pregnancy 'bible' does it talk about Spina Bifida or what to expect with such a diagnosis. It doesn't prepare me for the overwhelming fear of delivering a child that will then be taken out of my arms to another hospital. No where does it prepare me for the NICU or for all the medical mumbo jumbo that seems to be filling my brain. It certainly doesn't prepare me for all the unknowns. Instead, I have had to accept that no matter how badly I want control of this situation, it is not going to happen. I have to put complete faith and trust in Gage's doctors and be confident that they are going to make the best decisions for him. If they are certain that a natural delivery is going to be ok for him, then I have to believe that too.
Adding to that, I keep seeing these charts and blurbs about milestones and at what age your child should be reaching them.. and I am beginning to realize that Gage likley won't meet these milestones at the same time as other children, but I am keeping faith that he WILL hit them at some point. He will sit, he will stand, he will walk. He may do it differently, and he may need to work a little harder, or get tired a little faster, but he will do all these things that some seem to think he won't. I don't think I am getting ahead of myself, or wishing for things that may not come... I think Gage is showing us how feisty he is. I think this little man is going to amaze me every single day. I am so proud to be his mom, and Brandon is proud to be his dad.
We can't wait to meet him. <3
PS. Baby shower May 7th!! Finally some normalcy... I am SO excited to have everyone in one room to celebrate Gage's soon-to-be arrival!
Thursday, 21 April 2011
Thursday, 7 April 2011
Welcome to my rant!
I waited a week to write this. I needed some cool down time to process all the recent events and try to find the positive aspects in it all. I probably would have scared everyone away had I have written a week ago.
The doc's appointment on the 31st was great as far as Gage's prognosis goes. His vents are stable at 17mm and show no signs of increasing. His movements are good, his heartbeat is strong and he is growing perfectly; all excellent things.
Irritant #1: The ultrasound tech didn't let me see the baby. I understand that these appointments are not for the purpose of showing off the baby. I know that these are check ups and diagnostic ultrasounds but I travel 4 hours for these ultrasounds. The least they can do is turn the screen for 30 seconds so I can see the little guy move around. Not only that, but it gives me a little peace of mind knowing that he is doing ok in there. I have enough anxieties with this pregnancy, and the last time someone turned a screen away from me they threw a spina bifida diagnosis on me.. Thankfully nothing was wrong this time, everything is perfect and they have no concerns with Gage.
I meet with Dr. Ryan who is my delivery doctor; this is my first discussion with him about the delivery plan. As everyone knows I have been so torn with the decision of c-section or natural birth. All doctors and professionals I have come in contact with throughout this journey have supported me in whichever course I chose to take, and have reassured me that I needed to do what felt right for me. I decided (after many weeks) that a c-section was going to be best. I was confident in that choice, especially with me living so far from the delivery hospital. I knew this would make everything easier, I felt it was best for me and Gage, and this way all the doctors could be there and prepared for his birth. Boy, was I in for a surprise.
Irritant # 2: "I think I would like to have an elective c-section".....His response: "too bad, I will not perform a c-section unless absolutely necessary".....Pardon?
His in-my-face response caught me completely off guard and it was not at all what I expected to hear. Of course I started to bawl. Here I thought I had made the best option for us; I had done my research and talked to other moms, and never once thought I would be told 'no'. I was MAD. Brandon.. poor Brandon.. is trying his best to comfort me and I was just so ticked off. The doctor was confident that Gage would do well in a natural delivery, and becuase I am young and healthy, I would do well too. My nice cozy birth plan was now a complete mess.
Irritant # 3: My new birth plan (if you can even call it a plan)... Check my cervix starting at 36 weeks for any signs of labour. As soon as my OB thinks i am "favourable" for delivery, or if I go into labour he is to have me airlifted out of here to Sinai. It appears that Brandon cannot travel with me, he will have to drive. Adding to my anxieities about this so-called "plan", should there be an emergency and I need to deliver in North Bay, the baby is likely to be transported to CHEO instead of Sick Kids because CHEO is the northern point of contact... So everything I have gone through in Toronto, and all the doctors I have met with have been for nothing.
Irritant # 4: No more ultrasounds until 38 weeks. Ok, so I understand that this isn't totally uncommon for some women, but this is uncommon for spina bifida child with hydro. That means I am going 10 weeks without a check up on Gage. I am so happy his ventricles are stable now, but that could change at any time. 10 weeks with no check up does not sit well with me at all.
Everyone keeps saying that if the doctors aren't concerned then I shouldn't be concerned, but it is so hard not to be. I was feeling so prepared and ready and comfortable with the way things were going, and now I feel like I have totally lost all control in this pregnancy. Brandon is at ease knowing that the doctor's are happy with how well Gage is doing, and yes I am happy too, but I am so overwhelmed and wrapped up in the 'what-ifs' now, that I anticipate these last couple weeks to be long and stressful. I just hope that everything goes smoothly come Gage Day. Ugh.
On a more happy note, my baby shower is coming up. I am very excited for our families to all finally meet eachother. It is something to look forward to :)
The doc's appointment on the 31st was great as far as Gage's prognosis goes. His vents are stable at 17mm and show no signs of increasing. His movements are good, his heartbeat is strong and he is growing perfectly; all excellent things.
Irritant #1: The ultrasound tech didn't let me see the baby. I understand that these appointments are not for the purpose of showing off the baby. I know that these are check ups and diagnostic ultrasounds but I travel 4 hours for these ultrasounds. The least they can do is turn the screen for 30 seconds so I can see the little guy move around. Not only that, but it gives me a little peace of mind knowing that he is doing ok in there. I have enough anxieties with this pregnancy, and the last time someone turned a screen away from me they threw a spina bifida diagnosis on me.. Thankfully nothing was wrong this time, everything is perfect and they have no concerns with Gage.
I meet with Dr. Ryan who is my delivery doctor; this is my first discussion with him about the delivery plan. As everyone knows I have been so torn with the decision of c-section or natural birth. All doctors and professionals I have come in contact with throughout this journey have supported me in whichever course I chose to take, and have reassured me that I needed to do what felt right for me. I decided (after many weeks) that a c-section was going to be best. I was confident in that choice, especially with me living so far from the delivery hospital. I knew this would make everything easier, I felt it was best for me and Gage, and this way all the doctors could be there and prepared for his birth. Boy, was I in for a surprise.
Irritant # 2: "I think I would like to have an elective c-section".....His response: "too bad, I will not perform a c-section unless absolutely necessary".....Pardon?
His in-my-face response caught me completely off guard and it was not at all what I expected to hear. Of course I started to bawl. Here I thought I had made the best option for us; I had done my research and talked to other moms, and never once thought I would be told 'no'. I was MAD. Brandon.. poor Brandon.. is trying his best to comfort me and I was just so ticked off. The doctor was confident that Gage would do well in a natural delivery, and becuase I am young and healthy, I would do well too. My nice cozy birth plan was now a complete mess.
Irritant # 3: My new birth plan (if you can even call it a plan)... Check my cervix starting at 36 weeks for any signs of labour. As soon as my OB thinks i am "favourable" for delivery, or if I go into labour he is to have me airlifted out of here to Sinai. It appears that Brandon cannot travel with me, he will have to drive. Adding to my anxieities about this so-called "plan", should there be an emergency and I need to deliver in North Bay, the baby is likely to be transported to CHEO instead of Sick Kids because CHEO is the northern point of contact... So everything I have gone through in Toronto, and all the doctors I have met with have been for nothing.
Irritant # 4: No more ultrasounds until 38 weeks. Ok, so I understand that this isn't totally uncommon for some women, but this is uncommon for spina bifida child with hydro. That means I am going 10 weeks without a check up on Gage. I am so happy his ventricles are stable now, but that could change at any time. 10 weeks with no check up does not sit well with me at all.
Everyone keeps saying that if the doctors aren't concerned then I shouldn't be concerned, but it is so hard not to be. I was feeling so prepared and ready and comfortable with the way things were going, and now I feel like I have totally lost all control in this pregnancy. Brandon is at ease knowing that the doctor's are happy with how well Gage is doing, and yes I am happy too, but I am so overwhelmed and wrapped up in the 'what-ifs' now, that I anticipate these last couple weeks to be long and stressful. I just hope that everything goes smoothly come Gage Day. Ugh.
On a more happy note, my baby shower is coming up. I am very excited for our families to all finally meet eachother. It is something to look forward to :)
Friday, 25 March 2011
Real Time
We had our 3D ultrasound yesterday, and I must say that I am so glad I made the decision to go. I was terribly afraid that I was going to see a less than perfect baby, so I was feeling a little nervous in the days leading up to it. I also had this predetermined image in my head of what I think his lesion is going to look like (call me crazy) based on previous ultrasounds and was scared to see it in 3D. I had this horrible fear that his lesion would suddenly be ginormous, and I was not prepared to see that. Brandon, being calm, cool and collected as always told me I was being silly and needed to relax. I still do not understand how he remains so unfazed by everything; he's such a rock :)
So Brandon, Denise and I piled in my car for the trip. I had requested that they not show me the spine yet. Brandon was ready for it, he wanted to see it, I was still not ready. It's a weird thing...I can look through all these blogs of other families and kids, and look at all the surgery pictures and befores and afters, yet I was terrified to see that of my own baby. I'm not in denial of the spina bifida, I feel quite prepared and very at peace with it, so I'm really unsure of why I am still so scared of such a little part of who he is. I assume it is just fear of the unknown and I imagine everything will change once Gage is here.
anyways, I'm rambling. LOL... We had the ultrasound and it was amazing. It was unbelievable to see Gage in REAL time. We got to examine every little feature and watch his little fingers and toes move (yes, I have a video of his toes moving; another exciting moment). We got to see him yawn, and squint and hide his little face with his hands. As we all predicted, he has so many of Brandon's features, but was blessed with my big squishy cheeks we think. He was perfect. He was unflawed. There was nothing "less than perfect" about him.
I was even ready to see his spine because I soon realized he was just like every other baby. However, Gage was sitting on his lesion as always, and absolutely refused to move. Because of the shadow he was making we were unable to see it; I didn't mind.
Putting a face to baby Gage has made this much more real. Only 11 and a half weeks left... The first chapter in this journey is quickly approaching its ending.. YIKES!!
So Brandon, Denise and I piled in my car for the trip. I had requested that they not show me the spine yet. Brandon was ready for it, he wanted to see it, I was still not ready. It's a weird thing...I can look through all these blogs of other families and kids, and look at all the surgery pictures and befores and afters, yet I was terrified to see that of my own baby. I'm not in denial of the spina bifida, I feel quite prepared and very at peace with it, so I'm really unsure of why I am still so scared of such a little part of who he is. I assume it is just fear of the unknown and I imagine everything will change once Gage is here.
anyways, I'm rambling. LOL... We had the ultrasound and it was amazing. It was unbelievable to see Gage in REAL time. We got to examine every little feature and watch his little fingers and toes move (yes, I have a video of his toes moving; another exciting moment). We got to see him yawn, and squint and hide his little face with his hands. As we all predicted, he has so many of Brandon's features, but was blessed with my big squishy cheeks we think. He was perfect. He was unflawed. There was nothing "less than perfect" about him.
I was even ready to see his spine because I soon realized he was just like every other baby. However, Gage was sitting on his lesion as always, and absolutely refused to move. Because of the shadow he was making we were unable to see it; I didn't mind.
Putting a face to baby Gage has made this much more real. Only 11 and a half weeks left... The first chapter in this journey is quickly approaching its ending.. YIKES!!
Here he is. Our precious Gage. Much more than perfect <3
Thursday, 3 March 2011
Gage the Overachiever!
March 02, 2011 : 25 week check up day.
As comfortable as we are becoming with our trips to the hospital, there is still a little anxiety before we go into the room to see Gage in real time. We always go in hoping for the best, prepared for the worst, and holding our breath until they tell us we can breathe again. Although we are over the diagnosing stages, "check ups" can still bring bad news. And of course on this day, the doctors were wayyyy behind schedule. More stress.
Brandon and I waited 2 long hours in the waiting room before I finally asked what was going on! I guess there had been an emergency which pushed all the appointments back, but my nurse (being the sweetheart that she is) said she would try and sneak me back for my scan, as long as I didn't mind going to the "dungeon room" LOL.. we didn't mind. So off we went to see little Gageroo in a tiny cramped room. Gage was uncooperative as per usual and they had some difficulty getting a good picture of his brain but they managed. But he was so cute scratching his head :) I had to giggle. Unlike our previous ultrasounds, Gage was more than willing to show us his spine this day. We finally got a nice clear look at it, and got a better understanding of how his spine was different from other babies. They continue to say that his lesion is low lumbar/sacral area and measured approximately 1.1 x 2 cm... whether this is good or not, I'm not sure but it seems small to us. It looks as though there is a sac covering his lesion, but this hasn't been confirmed. I asked for pictures to post so I could explain things a little better to everyone, but given the dungeon room and the craziness, it just wasn't possible. Sorry everyone, hopefully next time!!
So the highlight of our day....
We had a new ultrasound tech today, and she thought she would check to see if she could get him to kick his legs for us. As most of you know, this is a huge concern for us (and probably all SB parents); Will he be able to move his legs? The tech started poking at poor Gage and irritating him, and then we watched the screen and waited... and waited... and sure enough, I got a good swift boot in the belly. Then another. It looked as though his left leg was weaker than the right, but then he began kicking that one too. The tech said these are voluntary kicks!!! Of course anything can happen in the next 15 weeks, and we have no idea what his spina bifida will look like until he is here, but so far our little man is showing us that he is doing his best in there!! So yes, I am feelings kicks, not punches :)We were very proud in that moment, and realized that moment was one of many that will come with being parents of a child with spina bifida. We have learned to appreciate the small things, and are truely amazed by everything he does, no matter how insignificant it may seem to anyone else :)
After our ultrasound we shuffled over to genetics quickly for some information and an update. Our wonderful friend Ronni informed us that Gage had his first test and got a perfect score!! I am so proud of my little overachiever today. Take a look! (I know, I know.. I am already that bragging mother I swore I would never be)
All in all, he is growing and developing exactly as he should. His bones are a good length and are all straight, his muscle tone is good, and his movements are great. His heart beat was 128bpm which made me panic because it has always been above 150bpm, but the doctor reassured me that this was normal as babies grow bigger. Gage is sitting at almost 2 pounds (850 grams), so he is a healthy boy :) His ventricles are measuring bigger than last time; he is now sitting at 16 and 17mm so of course they will continue to moniter him and watch his brain. They still haven't given him the official hydrocephalus diagnosis though. They are still saying it is only ventriculomegaly (dilated venticles) but we are prepared for what's to come.
So where does that leave us today?? 14 weeks away from Gage Day is where it leaves us, and we are trying to decide on a birth plan. As some of you know, North Bay is terrified of me and the idea of having to deliver this baby. My OBGYN's statement was "What am I supposed to do if you go into labour early?!" ... seriously? Very reassuring, thank you! So, should I go into early labour while at home, I will be airlifted out to Mount Sinai. I am now really struggling with the decision to have a natural delivery or an elective c-section. With Gage's diagnosis and the opening in his spine, I am totally freaked out about a natural birth, but at the same time a c-section is major surgery and it will be a longer recovery. The hospital, of course, is pushing for a natural delivery (induced on a chosen day) but I have many anxieties about the risks that may come for Gage. I get to make one decision in this pregnancy, and I can't seem to do it. I will inform everyone when I know!!
Overall, this visit was one of the best ones yet. There was no bad news, no concerns, no worries. We were shown on that day, that our little man is going to amaze us every single day. He is going to prove people wrong, and he WILL when everyone says he won't :)
Love Shayna and Brandon <3
As comfortable as we are becoming with our trips to the hospital, there is still a little anxiety before we go into the room to see Gage in real time. We always go in hoping for the best, prepared for the worst, and holding our breath until they tell us we can breathe again. Although we are over the diagnosing stages, "check ups" can still bring bad news. And of course on this day, the doctors were wayyyy behind schedule. More stress.
Brandon and I waited 2 long hours in the waiting room before I finally asked what was going on! I guess there had been an emergency which pushed all the appointments back, but my nurse (being the sweetheart that she is) said she would try and sneak me back for my scan, as long as I didn't mind going to the "dungeon room" LOL.. we didn't mind. So off we went to see little Gageroo in a tiny cramped room. Gage was uncooperative as per usual and they had some difficulty getting a good picture of his brain but they managed. But he was so cute scratching his head :) I had to giggle. Unlike our previous ultrasounds, Gage was more than willing to show us his spine this day. We finally got a nice clear look at it, and got a better understanding of how his spine was different from other babies. They continue to say that his lesion is low lumbar/sacral area and measured approximately 1.1 x 2 cm... whether this is good or not, I'm not sure but it seems small to us. It looks as though there is a sac covering his lesion, but this hasn't been confirmed. I asked for pictures to post so I could explain things a little better to everyone, but given the dungeon room and the craziness, it just wasn't possible. Sorry everyone, hopefully next time!!
So the highlight of our day....
We had a new ultrasound tech today, and she thought she would check to see if she could get him to kick his legs for us. As most of you know, this is a huge concern for us (and probably all SB parents); Will he be able to move his legs? The tech started poking at poor Gage and irritating him, and then we watched the screen and waited... and waited... and sure enough, I got a good swift boot in the belly. Then another. It looked as though his left leg was weaker than the right, but then he began kicking that one too. The tech said these are voluntary kicks!!! Of course anything can happen in the next 15 weeks, and we have no idea what his spina bifida will look like until he is here, but so far our little man is showing us that he is doing his best in there!! So yes, I am feelings kicks, not punches :)We were very proud in that moment, and realized that moment was one of many that will come with being parents of a child with spina bifida. We have learned to appreciate the small things, and are truely amazed by everything he does, no matter how insignificant it may seem to anyone else :)
After our ultrasound we shuffled over to genetics quickly for some information and an update. Our wonderful friend Ronni informed us that Gage had his first test and got a perfect score!! I am so proud of my little overachiever today. Take a look! (I know, I know.. I am already that bragging mother I swore I would never be)
All in all, he is growing and developing exactly as he should. His bones are a good length and are all straight, his muscle tone is good, and his movements are great. His heart beat was 128bpm which made me panic because it has always been above 150bpm, but the doctor reassured me that this was normal as babies grow bigger. Gage is sitting at almost 2 pounds (850 grams), so he is a healthy boy :) His ventricles are measuring bigger than last time; he is now sitting at 16 and 17mm so of course they will continue to moniter him and watch his brain. They still haven't given him the official hydrocephalus diagnosis though. They are still saying it is only ventriculomegaly (dilated venticles) but we are prepared for what's to come.
So where does that leave us today?? 14 weeks away from Gage Day is where it leaves us, and we are trying to decide on a birth plan. As some of you know, North Bay is terrified of me and the idea of having to deliver this baby. My OBGYN's statement was "What am I supposed to do if you go into labour early?!" ... seriously? Very reassuring, thank you! So, should I go into early labour while at home, I will be airlifted out to Mount Sinai. I am now really struggling with the decision to have a natural delivery or an elective c-section. With Gage's diagnosis and the opening in his spine, I am totally freaked out about a natural birth, but at the same time a c-section is major surgery and it will be a longer recovery. The hospital, of course, is pushing for a natural delivery (induced on a chosen day) but I have many anxieties about the risks that may come for Gage. I get to make one decision in this pregnancy, and I can't seem to do it. I will inform everyone when I know!!
Overall, this visit was one of the best ones yet. There was no bad news, no concerns, no worries. We were shown on that day, that our little man is going to amaze us every single day. He is going to prove people wrong, and he WILL when everyone says he won't :)
Love Shayna and Brandon <3
Monday, 21 February 2011
Our Story...(Grab a coffee, this is long lol)
Brandon and I met in March of 2009 while I was working, and he happened to be my customer at the time. Romantic, I know. The next year and a half were filled with ups and downs, but the love we had for eachother was always visible. We decided to relocate to Kingston in Spetember of 2010, find new jobs, and start a life together. We never expected that starting a new life, meant becoming parents.
I will never forget the day, October 13th, 2010 I took my first pregnancy test because I had been feeling awful. I figured it was the stress at that time, but wanted to be sure. Nothing prepared me for that positive pregnancy test. Me pregnant? Brandon and I weren't ready to be parents. Could we do this? How am I going to tell my mother?.....
I immediately filled with fear and started to bawl. I flew out of the bathroom with the pregnancy test above my head, screaming and upset, intending to yell at Brandon since this obviously had to be his fault. To my surprise, his response was "It's ok. This is ok Shayna, everything is going to be alright."
The second pregnancy test: positive. This was not going away..I was Pregnant. and I was terrified.
Brandon and I had our first ultrasound the following week to confirm my pregnancy. And there it was, just a tiny heartbeat on the screen (i was only about 5 or 6 weeks pregnant)... and Brandon and I were instantly filled with excitement.
I moved home in the next coming weeks, knowing I had to break the news to my mother, who I thought for sure would be the hardest person to tell. I was scared of her reaction. I was so scared that I wrote her a 5 page letter telling her the news and then left town for the week. She sent me a text message a short time later congratulating me on becoming a mommy....and then everything was ok.
The joy of being pregnant and welcoming a new baby into our families began to take over those close to us. The new baby was everyone's favorite topic of conversation, and we started purchasing clothes and necessities and discussing baby names and the kinds of things we want to do when he or she gets big. At that point everyone was sure I was having a girl, but I held on hope that he was going to be a boy. I just felt it. Brandon and I had chosen the names we liked and it was all becoming real. I was starting to accept the title of "mom".
On November 25th, we had our 12 week ultrasound and I couldn't believe how much the baby had grown already. The tech informed me that it looked like the baby had a large head (thanks Brandon) but nothing we needed to worry about. I was given a due date, some pictures, and was sent home. Everything looked perfect; I couldn't have been happier. I was over the 12 week hump, my baby was healthy and growing well, Brandon and I could finally announce it to all of our friends and remaining family members that we were having a baby. All were encouraging and supportive made us feel even more excited to become parents. The next couple of weeks flew by, I began to show a little, I was buying maternity clothes and waiting patiently to feel that first kick.
Our next ultrasound was scheduled for January 4th and all we were thinking was BOY OR GIRL. Never once did we consider that something would be wrong with the baby.The 12 week ultrasound was perfect, so surely this one would be as well. The tech did the measurments and all the baby's organs were functioning great. YES! move the wand down his back, over his bum, It's A Boy!! Brandon came in and we showed him his "son".. Our little Gage (which is the name we chose). I don't think I could have been any happier in that moment..... However that moment was short lived. Our lives took a drastic turn after that moment. That is when the ultrasound tech turned the screen away from me, and called for the specialist. I knew in that moment that something was wrong. I was immediately cleaned up and told that I needed to go see my family doctor for the results of the ultrasound. Results? What results? We were having a boy, what more did we need to know? I left with a horrible feeling in my stomach.
Brandon and I went straight to my doctor's office, the doctor sat down with a file, looked at me with that this-is-bad-news look, and I just started crying. All I remember hearing is "hydrocephalus", something about the baby having an enlarged head which wasn't good news, and that they needed to assess his "potential of life". I was completely numb. The doctor sent me home and said he would call me next week and I would be going to Toronto for more tests to figure out what exactly was going on with our precious baby boy. I was a mess, Brandon was as calm as could be. He didn't care what was wrong with our baby, he was ours and we would love him. Well of course we would, but I was not prepared for what we were facing. I did not want to accept that there was somthing wrong with my baby. This was all a mistake and everything was going to be ok. The doctors were wrong; our baby just genetically had a big head and would be just fine. I knew this was unrealistic, but I wanted to stay in denial about the whole thing.
I cried the next few days. I couldn't even look at the baby stuff out of fear that I was going to lose my baby boy. I no longer wanted to have an attachment to him. I became extremly resentful of everyone that was having perfectly healthy normal babies, and my son was sick.
I think that week was the longest week of oue lives.. On January 13, 2011 we finally packed up and made the trip to Toronto. We arrived at Mount Sinai early in the morning and started with an ultrasound. Our son would not cooperate for the techs (naturally) so we were in there for quite a while getting all kinds of pictures and measurments. This ultrasound was way more detailed this time and we could see his little fingers and toes and everything appeared ok to me, but what do I know. The tech stated that they could "confirm everything that was seen on the ultrasound in North Bay"... ok, that is great, but what did they see?... We moved into the doctors office for the results. I cried then. I didn't want anything to be wrong with my baby, all I could think about was how they were taking him away from me. I was never going to meet my baby. Brandon was still as calm as could be. He was my rock, reassuring me that no matter what happened, he is still our son and we would figure it out.The doctor came out and gave us a partial diagnosis at that time. Gage had a slightly large head, caused by fluid on his brain. His ventricles were enlarged which meant hydrocephalus. He had what they called "banana signs" which meant that his cerebellum was misshapen, he also showed "lemon signs" which meant that the front of his head was slightly indented likely from the pressure on his brain. They were unable to locate his corpus collosum which meant that either it was missing and never going to form, or that it was too early and they couldn't see it yet. Brandon and I had no idea what any of this meant, so we just continued to stare blankly at the doctors. "So what does that mean for him?"... The doctors informed us that typically these were signs of a neural tube defect called Spina Bifida however Gage was missing the major indicator of this diagnosis. Spina Bifida is a defect in which "the spinal column is imperfectly closed so that part of the meninges or spinal cord protrudes, often resulting in hydrocephalus and other neurological disorders." In english, there is a lesion or opening located on some level of his back in which the nerves are exposed. If this was his diagnosis he may or may not walk depending on where the nerves were damaged. But the doctors could not find a lesion on his spine, however he had all the brain indicators. They were unable to give me a concrete diagnosis at that time but told me they would like to perform at fetal MRI in 3 weeks, which would give us an accurate picture of his spine and brain. We were then given the worst case scenario from the doctors. They informed us that we could terminate at any time for medical reasons, and kept reminding me that this was going to be an option up to 24 weeks. I couldn't believe this was happening. We believe that the doctors kept pushing us because we are so young and were told that generally, most young women in my position terminate becuase they could try again. I was shocked. The doctors left and I cried once again. Brandon just hugged me and let me cry. I just kept saying that I didn't want them to take my baby away, and neither did he. I don't know how he managed to stay so strong. The day ended with blood work and then we booked another appointment for me to return on February 3, 2011. This is the day we would get our answers. I didn't know what to do in the meantime, so I began to research.
The first place I stumbled upon was a spina bifida forum on babycenter.com and it has since become my safe haven. I began shuffling through their blogs about their children who have SB, and much to my surprise, they were happy, smiling, smart kids. They didn't look sick, they didn't look sad, they weren't the vision I had of SB. I began to feel a little better. I introduced myself to the women and gave an overview of my diagnosis and they were sure he had SB, and that maybe his opening was just small and the doctors couldn't see it. The women were encouraging and welcoming and helpful, and I started to feel confident. Spina Bifida. no problem!! Then I researched Gage's possible missing Corpus Collosum. The outlook for him with this diagnosis was not nearly as positive as the spina. The corpus collosum is a small piece of brain tissue that sits between the two hemspheres of the brain. It sends signals from one side to the other. Without his CC, there would likely be delays, but we would never know the extent until he arrived. He may never talk, he may never eat on his own, or walk, or breathe on his own.When added with the diagnosis of Spina Bifida and the brain symptoms that go with it, Gage's outcome may not be a very positive one. Brandon and I were scared. We were sure that we were going to lose our baby boy now. Our families had mixed reactions to the possible diagnoses; some were positive, some were negative. Some questioned whether we could handle this, others were overly supportive and encouraging. I remember getting angry in those following weeks with everyone. I was tired of being questioned and asked if I could handle his diagnosis. Yes, we knew what we were getting into, and Brandon and I were sure that we could handle SB. We just hoped that his tiny piece of missing brain tissue appeared.
February 3rd came and Brandon and I were filled with mixed emotions that day. For us at that point, Spina Bifida was going to be a relief as long as his CC was there. They performed the ultrasound again, and after an hour (and Gage being uncooperative) they still could not find a lesion on his spine. Surely it had to be there...we still held on hope that it was just really low and really small which would be best case scenario. We met with another specialist who insisted that Gage couldn't have the brain indicators without the spinal lesion. He asked if he could take a whirl at the ultrasound. Sure! why not! The more eyes the better. This doctor flipped me around and moved me side to side and contorted me in different positions to get Gage to lift his bum to the wand.. (stubborn kid) and sure enough, when he finally lifted his bum there was the split, clear as day. I remember smiling. Brandon gave my foot a squeeze. I knew he was smiling too. Gage was just sitting on his lesion hiding it from us the whole time. The doctor suspected it was lower lumbar/sacral which was good. We were just happy to start the day with some answers. Then I remembered why we were concerned in the first place. "Is his corpus collosum there?" Yes. it appeared to be there. It was thin, as it was newly forming, but it was there. I think Brandon and I both started breathing again.. We were happy. I was back to my 'Spina Bifida, no problem!!' attitude. We had this. Everything was going to be just fine, as Brandon had reassured me right from the start. Of course we still had to have the MRI to confirm everything, but I wasn't afraid of the results anymore. My only fear was being put in a tube for an hour!! We went over to Sick Kids, and I was set up for the MRI. The doctor was very sweet and very relaxing and talked to me through the whole procedure (thank goodness). It took about 45 minutes and it was very loud and annoying. I had to remain very still the whole time, and naturally Gage moved around alot so they had to take many pictures to get a clear view of everything. We went back to Sinai for the results and sure enough SB was confirmed. Finally; an official diagnosis. It appeared to be lower lumbar, although they could not give us an exact level of the lesion. It appears to be a shallow, open lesion, a few centimeters long. The ventircles in his brain have not gotten worse, and are currently sitting at 12 and 14mm. They told me that I would still be able to have a natural delivery, and then reminded me once again that termination was an option. No. Termination was not an option. Brandon and I were totally relieved that SB was his only diagnosis and we were so ready to face the road ahead of us. We met with a geneticist that day, and they were able to make an educated assumption that our diagnosis was not related to our genetics and that there was nothing we could have done to prevent the diagnosis. It just is. It was nice to be reassured that this was not our fault, because I really thought I was doing all the right things in my pregnancy, and I remember wondering if there was something I did wrong. The geneticist informed me that sometimes these things are environmentally related and there is nothing we could have dont to stop it.
The following week we met with Dr. Paige Church, who is a neonatal specialist and also works directly with spina bifida kids at Bloorview clinic on a daily basis. She was so passionate and was seriously a breath of fresh air. This woman answered all of our questions and gave us a REAL picture of what spina bifida was like. Children playing, youngsters taking their first steps up and down the hallway with crowd of people cheering them on, kids playing hockey and swimming in pools. She explained the role of all the doctors and some of the challenges we will face as Gage grows, but she showed us that everything was manageable, and that all of these kids are happy and smart and lead great lives. She was so encouraging and put the joy back into my pregnancy. From there we went to meet with Dr. Drake for the first time. He is the neurosurgeon who will be doing Gage's surgeries. I will have many people in the room when I deliver to watch over Gage and assess him at birth. He will then be taken across the street to Sick Kids where he will stay until his surgery. Gage will have to have surgery within 48 hours of birth to close the opening on his back, and they will assess whether he needs a shunt or not to drain the fluid from his brain. He may get a shunt on the same day of his back surgery, or he may not need one for a year or two. It will be a wait and see situation.
As scared as I am for him to have surgery so early in life, I am confident that he is in good hands and I know the doctors will take extra good care of him. I am confident that Gage will fight through this as he seems to have that attitude already :)
And that is how we got to where we are right now... We have gone from overwhelming fear and sadness, to extreme excitement. We cannot wait to meet our special little boy. Brandon and I have been through alot in our relationship, but Gage has really brought us together and shown us how much we really depend on eachother. He has helped us understand what it means to be a family, and has made us so strong as individuals and as a couple. I would have fallen apart weeks ago had Brandon not reamained calm through the whole thing. He let me cry and grieve the loss of a 'normal' pregnancy, but also reassured me that he was going to be there every step of the way. This really helped me accept his diagnosis. Brandon and I know that we have a long challenging road ahead of us, and there is still so much that we have to learn, but we have never been happier. Gage is going to change our lives and has already made us better people. I cannot wait to see the tolerance he brings to our families, and the affect he will have on the lives of those around us.
For those people who are reading this for the first time, and want to tell us "I'm so sorry".. please don't be. There is no need for apologies, or sadness, or feelings of pity. We are ok. We are totally at peace with who Gage is and who he will be. Brandon and I really believe that we were chosen for him. Gage needed us as much as we needed him. If you have a question and are scared to ask us or offend us, once again, don't be. We accept the questions and want people to learn with us.
We look forward to updating everyone as each appointment passes and as we get close to his birth day. And we cannot wait to show the world our little Gage and all the joys he will bring to us as he grows.
Come back for updates
Love Shayna and Brandon <3
I will never forget the day, October 13th, 2010 I took my first pregnancy test because I had been feeling awful. I figured it was the stress at that time, but wanted to be sure. Nothing prepared me for that positive pregnancy test. Me pregnant? Brandon and I weren't ready to be parents. Could we do this? How am I going to tell my mother?.....
I immediately filled with fear and started to bawl. I flew out of the bathroom with the pregnancy test above my head, screaming and upset, intending to yell at Brandon since this obviously had to be his fault. To my surprise, his response was "It's ok. This is ok Shayna, everything is going to be alright."
The second pregnancy test: positive. This was not going away..I was Pregnant. and I was terrified.
Brandon and I had our first ultrasound the following week to confirm my pregnancy. And there it was, just a tiny heartbeat on the screen (i was only about 5 or 6 weeks pregnant)... and Brandon and I were instantly filled with excitement.
I moved home in the next coming weeks, knowing I had to break the news to my mother, who I thought for sure would be the hardest person to tell. I was scared of her reaction. I was so scared that I wrote her a 5 page letter telling her the news and then left town for the week. She sent me a text message a short time later congratulating me on becoming a mommy....and then everything was ok.
The joy of being pregnant and welcoming a new baby into our families began to take over those close to us. The new baby was everyone's favorite topic of conversation, and we started purchasing clothes and necessities and discussing baby names and the kinds of things we want to do when he or she gets big. At that point everyone was sure I was having a girl, but I held on hope that he was going to be a boy. I just felt it. Brandon and I had chosen the names we liked and it was all becoming real. I was starting to accept the title of "mom".
On November 25th, we had our 12 week ultrasound and I couldn't believe how much the baby had grown already. The tech informed me that it looked like the baby had a large head (thanks Brandon) but nothing we needed to worry about. I was given a due date, some pictures, and was sent home. Everything looked perfect; I couldn't have been happier. I was over the 12 week hump, my baby was healthy and growing well, Brandon and I could finally announce it to all of our friends and remaining family members that we were having a baby. All were encouraging and supportive made us feel even more excited to become parents. The next couple of weeks flew by, I began to show a little, I was buying maternity clothes and waiting patiently to feel that first kick.
Our next ultrasound was scheduled for January 4th and all we were thinking was BOY OR GIRL. Never once did we consider that something would be wrong with the baby.The 12 week ultrasound was perfect, so surely this one would be as well. The tech did the measurments and all the baby's organs were functioning great. YES! move the wand down his back, over his bum, It's A Boy!! Brandon came in and we showed him his "son".. Our little Gage (which is the name we chose). I don't think I could have been any happier in that moment..... However that moment was short lived. Our lives took a drastic turn after that moment. That is when the ultrasound tech turned the screen away from me, and called for the specialist. I knew in that moment that something was wrong. I was immediately cleaned up and told that I needed to go see my family doctor for the results of the ultrasound. Results? What results? We were having a boy, what more did we need to know? I left with a horrible feeling in my stomach.
Brandon and I went straight to my doctor's office, the doctor sat down with a file, looked at me with that this-is-bad-news look, and I just started crying. All I remember hearing is "hydrocephalus", something about the baby having an enlarged head which wasn't good news, and that they needed to assess his "potential of life". I was completely numb. The doctor sent me home and said he would call me next week and I would be going to Toronto for more tests to figure out what exactly was going on with our precious baby boy. I was a mess, Brandon was as calm as could be. He didn't care what was wrong with our baby, he was ours and we would love him. Well of course we would, but I was not prepared for what we were facing. I did not want to accept that there was somthing wrong with my baby. This was all a mistake and everything was going to be ok. The doctors were wrong; our baby just genetically had a big head and would be just fine. I knew this was unrealistic, but I wanted to stay in denial about the whole thing.
I cried the next few days. I couldn't even look at the baby stuff out of fear that I was going to lose my baby boy. I no longer wanted to have an attachment to him. I became extremly resentful of everyone that was having perfectly healthy normal babies, and my son was sick.
I think that week was the longest week of oue lives.. On January 13, 2011 we finally packed up and made the trip to Toronto. We arrived at Mount Sinai early in the morning and started with an ultrasound. Our son would not cooperate for the techs (naturally) so we were in there for quite a while getting all kinds of pictures and measurments. This ultrasound was way more detailed this time and we could see his little fingers and toes and everything appeared ok to me, but what do I know. The tech stated that they could "confirm everything that was seen on the ultrasound in North Bay"... ok, that is great, but what did they see?... We moved into the doctors office for the results. I cried then. I didn't want anything to be wrong with my baby, all I could think about was how they were taking him away from me. I was never going to meet my baby. Brandon was still as calm as could be. He was my rock, reassuring me that no matter what happened, he is still our son and we would figure it out.The doctor came out and gave us a partial diagnosis at that time. Gage had a slightly large head, caused by fluid on his brain. His ventricles were enlarged which meant hydrocephalus. He had what they called "banana signs" which meant that his cerebellum was misshapen, he also showed "lemon signs" which meant that the front of his head was slightly indented likely from the pressure on his brain. They were unable to locate his corpus collosum which meant that either it was missing and never going to form, or that it was too early and they couldn't see it yet. Brandon and I had no idea what any of this meant, so we just continued to stare blankly at the doctors. "So what does that mean for him?"... The doctors informed us that typically these were signs of a neural tube defect called Spina Bifida however Gage was missing the major indicator of this diagnosis. Spina Bifida is a defect in which "the spinal column is imperfectly closed so that part of the meninges or spinal cord protrudes, often resulting in hydrocephalus and other neurological disorders." In english, there is a lesion or opening located on some level of his back in which the nerves are exposed. If this was his diagnosis he may or may not walk depending on where the nerves were damaged. But the doctors could not find a lesion on his spine, however he had all the brain indicators. They were unable to give me a concrete diagnosis at that time but told me they would like to perform at fetal MRI in 3 weeks, which would give us an accurate picture of his spine and brain. We were then given the worst case scenario from the doctors. They informed us that we could terminate at any time for medical reasons, and kept reminding me that this was going to be an option up to 24 weeks. I couldn't believe this was happening. We believe that the doctors kept pushing us because we are so young and were told that generally, most young women in my position terminate becuase they could try again. I was shocked. The doctors left and I cried once again. Brandon just hugged me and let me cry. I just kept saying that I didn't want them to take my baby away, and neither did he. I don't know how he managed to stay so strong. The day ended with blood work and then we booked another appointment for me to return on February 3, 2011. This is the day we would get our answers. I didn't know what to do in the meantime, so I began to research.
The first place I stumbled upon was a spina bifida forum on babycenter.com and it has since become my safe haven. I began shuffling through their blogs about their children who have SB, and much to my surprise, they were happy, smiling, smart kids. They didn't look sick, they didn't look sad, they weren't the vision I had of SB. I began to feel a little better. I introduced myself to the women and gave an overview of my diagnosis and they were sure he had SB, and that maybe his opening was just small and the doctors couldn't see it. The women were encouraging and welcoming and helpful, and I started to feel confident. Spina Bifida. no problem!! Then I researched Gage's possible missing Corpus Collosum. The outlook for him with this diagnosis was not nearly as positive as the spina. The corpus collosum is a small piece of brain tissue that sits between the two hemspheres of the brain. It sends signals from one side to the other. Without his CC, there would likely be delays, but we would never know the extent until he arrived. He may never talk, he may never eat on his own, or walk, or breathe on his own.When added with the diagnosis of Spina Bifida and the brain symptoms that go with it, Gage's outcome may not be a very positive one. Brandon and I were scared. We were sure that we were going to lose our baby boy now. Our families had mixed reactions to the possible diagnoses; some were positive, some were negative. Some questioned whether we could handle this, others were overly supportive and encouraging. I remember getting angry in those following weeks with everyone. I was tired of being questioned and asked if I could handle his diagnosis. Yes, we knew what we were getting into, and Brandon and I were sure that we could handle SB. We just hoped that his tiny piece of missing brain tissue appeared.
February 3rd came and Brandon and I were filled with mixed emotions that day. For us at that point, Spina Bifida was going to be a relief as long as his CC was there. They performed the ultrasound again, and after an hour (and Gage being uncooperative) they still could not find a lesion on his spine. Surely it had to be there...we still held on hope that it was just really low and really small which would be best case scenario. We met with another specialist who insisted that Gage couldn't have the brain indicators without the spinal lesion. He asked if he could take a whirl at the ultrasound. Sure! why not! The more eyes the better. This doctor flipped me around and moved me side to side and contorted me in different positions to get Gage to lift his bum to the wand.. (stubborn kid) and sure enough, when he finally lifted his bum there was the split, clear as day. I remember smiling. Brandon gave my foot a squeeze. I knew he was smiling too. Gage was just sitting on his lesion hiding it from us the whole time. The doctor suspected it was lower lumbar/sacral which was good. We were just happy to start the day with some answers. Then I remembered why we were concerned in the first place. "Is his corpus collosum there?" Yes. it appeared to be there. It was thin, as it was newly forming, but it was there. I think Brandon and I both started breathing again.. We were happy. I was back to my 'Spina Bifida, no problem!!' attitude. We had this. Everything was going to be just fine, as Brandon had reassured me right from the start. Of course we still had to have the MRI to confirm everything, but I wasn't afraid of the results anymore. My only fear was being put in a tube for an hour!! We went over to Sick Kids, and I was set up for the MRI. The doctor was very sweet and very relaxing and talked to me through the whole procedure (thank goodness). It took about 45 minutes and it was very loud and annoying. I had to remain very still the whole time, and naturally Gage moved around alot so they had to take many pictures to get a clear view of everything. We went back to Sinai for the results and sure enough SB was confirmed. Finally; an official diagnosis. It appeared to be lower lumbar, although they could not give us an exact level of the lesion. It appears to be a shallow, open lesion, a few centimeters long. The ventircles in his brain have not gotten worse, and are currently sitting at 12 and 14mm. They told me that I would still be able to have a natural delivery, and then reminded me once again that termination was an option. No. Termination was not an option. Brandon and I were totally relieved that SB was his only diagnosis and we were so ready to face the road ahead of us. We met with a geneticist that day, and they were able to make an educated assumption that our diagnosis was not related to our genetics and that there was nothing we could have done to prevent the diagnosis. It just is. It was nice to be reassured that this was not our fault, because I really thought I was doing all the right things in my pregnancy, and I remember wondering if there was something I did wrong. The geneticist informed me that sometimes these things are environmentally related and there is nothing we could have dont to stop it.
The following week we met with Dr. Paige Church, who is a neonatal specialist and also works directly with spina bifida kids at Bloorview clinic on a daily basis. She was so passionate and was seriously a breath of fresh air. This woman answered all of our questions and gave us a REAL picture of what spina bifida was like. Children playing, youngsters taking their first steps up and down the hallway with crowd of people cheering them on, kids playing hockey and swimming in pools. She explained the role of all the doctors and some of the challenges we will face as Gage grows, but she showed us that everything was manageable, and that all of these kids are happy and smart and lead great lives. She was so encouraging and put the joy back into my pregnancy. From there we went to meet with Dr. Drake for the first time. He is the neurosurgeon who will be doing Gage's surgeries. I will have many people in the room when I deliver to watch over Gage and assess him at birth. He will then be taken across the street to Sick Kids where he will stay until his surgery. Gage will have to have surgery within 48 hours of birth to close the opening on his back, and they will assess whether he needs a shunt or not to drain the fluid from his brain. He may get a shunt on the same day of his back surgery, or he may not need one for a year or two. It will be a wait and see situation.
As scared as I am for him to have surgery so early in life, I am confident that he is in good hands and I know the doctors will take extra good care of him. I am confident that Gage will fight through this as he seems to have that attitude already :)
And that is how we got to where we are right now... We have gone from overwhelming fear and sadness, to extreme excitement. We cannot wait to meet our special little boy. Brandon and I have been through alot in our relationship, but Gage has really brought us together and shown us how much we really depend on eachother. He has helped us understand what it means to be a family, and has made us so strong as individuals and as a couple. I would have fallen apart weeks ago had Brandon not reamained calm through the whole thing. He let me cry and grieve the loss of a 'normal' pregnancy, but also reassured me that he was going to be there every step of the way. This really helped me accept his diagnosis. Brandon and I know that we have a long challenging road ahead of us, and there is still so much that we have to learn, but we have never been happier. Gage is going to change our lives and has already made us better people. I cannot wait to see the tolerance he brings to our families, and the affect he will have on the lives of those around us.
For those people who are reading this for the first time, and want to tell us "I'm so sorry".. please don't be. There is no need for apologies, or sadness, or feelings of pity. We are ok. We are totally at peace with who Gage is and who he will be. Brandon and I really believe that we were chosen for him. Gage needed us as much as we needed him. If you have a question and are scared to ask us or offend us, once again, don't be. We accept the questions and want people to learn with us.
We look forward to updating everyone as each appointment passes and as we get close to his birth day. And we cannot wait to show the world our little Gage and all the joys he will bring to us as he grows.
Come back for updates
Love Shayna and Brandon <3
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