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 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