Tuesday, December 13, 2016

Stories of Hope - Jodie's Story 10

This is the hardest part of this journey to write and I’d be lying to you if I told you that even as I write this, so many, many months after it happened that it becomes any easier. I don’t even want to write it but I will for it writing it is part of healing, writing it is part of finding hope and ignoring it, pushing it away, is like pretending none of it ever existed and that neither of my twins really mattered.  Whatever I thought I knew about life before the events you will read about now unfolded, I learned very quickly that day, was nothing on what became my reality, what is my reality to this day.  What began as a crisis, an event so big my brain could hardly wrap itself around it now became a moment of shattered dreams and broken hearts.  But the day did not start out this way….

I awoke that morning to movement from our sick little baby A… strong kicks actually woke me and a smile stretched out over my face…. He was alive, He was kicking.  What a day to rejoice, what a miracle!  I tried to get Geoff to first wake up and then to feel his strong kicks but by then he had quieted completely.  Geoff hadn’t felt them move yet, I’d been the only lucky one.  With an anterior placenta and small for gestational age babies, not to mention a mama with a lot of extra ‘protection’, feeling them from the outside was still pretty hard.  I still felt a lot of anxiety about their future but that kick made me feel so connected to both of them, especially baby A.  I had no idea until hours later what the kick must have meant.

Around 10:30 we were taken across the street to Sick Kids Hospital to the heart specialist’s office and taken to the ultrasound machine.  Expecting to hear from the doctor that both of our boys were going to be keeping their mommy uncomfortable for the next thirteen weeks, our world came to a sudden and frightening halt….

The doctor doing the scan asked which side the recipient baby was on and then sucked in his breath sharply. Without looking up at us or stopping he said “This baby has no heartbeat. Your baby has died. I’m sorry, your baby passed away”.
And the world crashed around us. All I wanted to do was curl up and cry, all I wanted was to be left alone with Geoff to cry and hold each other. It’s amazing the memories you hold on to, amazing the feelings that even writing this can bring.  I am literally typing through tears right now as I picture that man, the grey sweater and jeans he wore, the orange walls of the exam room.  I can still feel the warm gel on my belly, still hear the blood rushing to my head, drowning out the sound of his accented voice.  I can still see Geoff standing at the end of the bed, crumbling against the wall, his face in a horrible grimace, tears streaming down his cheeks.  I can picture the pink of the pj’s I was wearing as I used the sleeve to shelter my face and tried my best to roll away towards the wall, away from the man who had just delivered the worst news of my life.
But this doctor was all business and after a minute or two he said “I’m very sorry Mrs. Tummers, this should have been checked before you left Mt. Sinai but I still need to scan the other baby... please you need to calm down so I can scan you.”

 I have no idea where I found the strength to gain control of my emotions for the doctor to complete the test. Geoff tells me to this day that he was in awe of me and this strength and says that he, on the other hand, was a wreck.  He didn’t know what to do.  He left the room and called our families to let them know what had happened but to this day he says it seemed like he was watching someone else doing these things.
Everything seemed surreal.  Once the testing was completed, I asked the doctor what would happen now to our little baby A.  There is no way I can express this affectively but it was the most horrible moment, he had told me the most devastating  news that could have been given to me…’your body will just absorb him’.   I sobbed and sobbed.  Not only was I not going to get to have my twins together, not only was I now the mother of an angel baby and would NEVER be the mother of twins, but I was never going to meet my angel, it would be like my baby never existed.  He was wrong, this was explained to me later that day, but at the time it was the most devastating thing.   And like I said earlier, there are memories that are so distinctive, so vivid from that day and that is one of the worst.

The doctor gave us some time alone before we returned to Sinai.  I had had a brief hug from Geoff but now he came to me and wrapped me in the biggest hug and we sobbed.  We could hardly stand up we were crying so hard and then I just became so overwhelmed that I began to shake and I pushed him away.  He walked out the exam room, unsure what to do or say.  He went to make yet another phone call and I stood at the window looking out at the city of Toronto.  People bustled below on the street, laden down with packages as they shopped for Christmas.  The sun shone and the snow sparkled.  And inside Sick Kids Hospital my world fell apart.  I am filled with vivid memories of sitting in that room and later in a hallway.  I can picture the green wire benches as I sat at a window in the hallway that overlooked the lobby/cafeteria area of Sick Kids hospital. It was all decorated for Christmas and was filled with murals, decorations, toys…all things filled with joy and excitement in attempt to distract the children who were being treated there from the reality that was their life. 
It did nothing to distract me, it did nothing to make this moment anything but the worst moment of my life. 

Once back in our room, Geoff and I just sat there in a daze not knowing what to say or do for each other.  We shed a lot of tears, both of sadness for baby A and of joy for baby B.  Visions of matching clothes, two beautiful matching boys, our boys, growing up together, being the best of friends… they were shattered.  There is nothing that will ever match the heartbreak we felt that day and even as I write this I am sobbing and if feels like it’s happening all over again. What I would have given to have that be a nightmare that I woke up from.

The drama of the day was not gone yet, the crisis not yet over as we were about to learn.  Dr. Ryan came in after the staff called to tell him what had happened. He was honest with us…this was not the scenario he’d envisioned when he first read Dr. Whittle’s report, which was very favourable and wasn’t even the scenario he truly believed possible when he first met me and scanned our boys.  He spoke, often, to the resident with him about things like ‘acute case’, ‘rapid progression’, and ‘atypical chain of events’.  It became very apparent to us that Dr. Ryan wasn’t prepared for this to be our outcome either. 
His new concern, however, was the next crisis we had on our hands.  He was very worried for baby B as tests were showing that he was now anaemic (severly and critically so we’ve learned just in the last year).  And so much scanning and rescanning was done, the question seemed to be if it was high enough to warrant a blood transfusion…or so they told me.   However this wasn’t all they were looking at…one doctor who scanned me told us, devastatingly, that they needed to make sure that this blood transfusion wasn’t just saving a very sick baby.   Oh how I hated this doctor.  How could it ever not be worth saving one of my sons?  I’d already lost one; I was NOT going to lose another!!! Dr. Ryan was much more positive and said he was unsure of what the best course of action would be as the results did seem to vary.  He explained that the procedure was not a guarantee and could come with consequences of it’s own. 

We were sent back to my room to wait.  It was a crisis but now that it was determined it seemed that the seconds were like hours as we waited for the next intervention.  I kept imagining that when they scanned me next time that no heart beat would be found that I would soon be the mommy of two little angels, not just one.  The whole thing still seemed like a dream, like someone else’s life.  I would feel movement and I would smile thinking of my twins, imagining our future.  Then I would remember and burst into tears.  I sat on the window sill staring out at Sick Kid’s across the street, all decorated for the holidays.  I watched the people come and go on the street and I thought ‘why me, why us?’  

Geoff was a mess.  He kept leaving the room in tears...going for a smoke he said.   I know him and know that he was trying to stay strong for me, trying to keep me from being hysterical and didn’t want to upset me more by crying in front of me.  At the time I just wished he’d stay but now I realize that I should communicated what I needed better because this pattern of him hiding his emotions to protect me and mine continued for a very long time and caused a huge gap between us that would take years of work to repair.
We’d been back in my room for about an hour when my mom and dad arrived.  This was the second hardest thing I’d experienced on this whole journey up to this point.  Like most parents my mom and dad love their kids, fiercely, and even more so maybe, their grandkids.  They had been overjoyed about us having twins.  I mean that woman had shopped her heart out just a few weeks prior to this crisis happening.  I stood and walked into their embrace and it was all I could do to keep myself upright, to remain standing and not crumble at their feet.  I hated that we’d had to give them this news, hated that we had to go through this with them…hated that we had to see the looks of sadness and heartache on their faces. 

Not long after they arrived we were called back in to meet with Dr. Ryan again to assess our baby B once again, to check to see if things were better, were worse or, in my worst fears, were over.  Things weren’t any better and only marginally worse thankfully but it was determined then that there were no other options, a transfusion needed to be done as soon as the blood was ready. 
It was a very tough afternoon and evening waiting for the blood to be ready.  I am so glad that we had my folks with us.  They are pretty amazing people in general and the best parents anyone could ask for.  I am pretty sure that we wouldn’t have made it through the day without them there.  Geoff  was pretty much at his breaking point and having them there allowed him to have some time by himself to think, to walk and to be honest, to cry.  There wasn’t much to do but sit and wait.  Conversation was pretty strained.  We tried to make casual conversation about things like the family Christmas we were all missing….yeah that made us all forget easily what was going on.  We talked about the upcoming holidays but that just made me sad thinking about all the plans and thoughts I’d had about next year. 

Late that evening everything was finally ready for the blood transfusion and then there came the ‘argument’ of who would come with me for the procedure.  Geoff was done, he doesn’t do well with needles anyway but he was so emotional and stressed that he knew he would not have been much support to me.  Mom wanted Dad to go but Dad, though he wanted to come, felt like it was a mother daughter moment.  In the end Dad’s love for science, medical procedures and things of the sort won out and he stayed with me for the procedure.  It was wonderful to have him there, holding my hand, wiping my face, and telling me how proud of me he was and how much he loved me.  I think he fell in love with my boys all over again as he watched their images, for the first time, on the ultrasound screen.  It will sadden me forever that no one but Geoff and I ever saw both of our boys alive and moving.

The room was filled with staff…. 3 doctors, 2 nurses assisting Dr. Ryan, a nurse helping with the blood transfusion and a lab technician.  The procedure was a bit uncomfortable as they used a really long needle and they put it in at 2 or 3 different places.  It took a very long time to do this procedure as they had to check and recheck the positions of the needle and of the baby.  They had to ensure the needle went into the right place and they had to make sure they put the right amount of blood in.  After I was cleaned up I was wheeled back to my room….to wait and hope and pray that my sweet surviving twin would indeed survive, that there will be no damage to his brain.

My Mom and Dad stayed with me until Geoff finally found me some supper.  I hadn’t eaten since I’d learned that baby A was gone and though I didn’t feel like eating, I knew that it was important to eat, for my survivor and for me.  I’d already heard this comment a few times that day ‘you need to keep your strength up, you need to keep positive and focused…for the twin that did survive’ and I had a feeling that I would come to love and hate those phrases, those people, those thoughts.

After they left I curled into a ball facing away from Geoff and let the tears come.  All I wanted to do was see my twins and share my heart with them.  I don’t know how you tell a child you‘ve loved from the moment you learned they were with you that you will never get to see them take their first breath and hear their first cry, never get to see them take their first steps, never feel their hugs, kiss away their tears, never see them go to school, graduate or get married.  My dear sweet children… I was devastated that they wouldn’t grow up together, that they would not share that twin bond and that they would not be the best of friends.  I was heartbroken, I was shattered.  I wanted to scream, to rip things from the walls of that horrible hospital room.  I wanted to run back to that doctor at Sick Kids who said “this baby has no heartbeat.  I’m sorry your baby has died” and tell him he was wrong, he was so very wrong.  I had felt him move, I know I did...he had to be wrong. 

How I ached to hold my sweet baby A, to tell you him how sorry I was that I couldn’t protect him.  I had never even met him and I knew I would I miss him forever.  The world would never be the same, I would forever be broken, part of my heart missing. 

How would I ever make it out of this, how would I go on?  

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