Today marks the day that this journey began...one year ago. It is the day our boys were diagnosed with Twin to Twin Transfusion Syndrome. And it is an awful and sad time for me right now. I can't believe that one year ago I left my house to go to work, left work to go to an appointment and had no idea what crisis was happening inside of my body...and had no idea that when I returned to my home again I would be forever changed.
The tears are so present these days, the moods so intense, the feelings of sadness and wishful thinking so strong. I have been writing a lot lately though not posting much. I will be posting a few things in the next few days. I'm helping a TTTS mom write a book and will be attaching segments over the next few days. I hope you will read them and perhaps understand a bit of what our life was and is like.
For any of our family and friends who read this blog, the people who will see me over the next few days please understand the I want and NEED to talk about my boys, especially Cole. Please understand that I am going to cry and I may not be the most fun to be around but I need you to be around me, I need you to hug me or call me and help me get through this.
I miss my son so very much!!!
On Dec..11th I saw my OB, Dr. Hancock again. He asked all the usual questions and scanned me. He made jokes about how beautiful my babes looked and tried to find the sex out for us…no luck. He did ask when my next scan was and seemed happy that it was that day. I just recalled as I was typing this that he also asked me when the next scan after that was at that time and when I told him he said it was important that I have them often. His words were something like ‘well all looks well to me but it’s good that I can defer to the experts….I’ll let you know if they tell me anything. ‘Foreshadowing for sure.
I arrived for my scan only to find out that a miscommunication had occurred and they had cancelled my one on this day. I was pretty mad as I had taken the afternoon off work and only had so much time I could use for all these many appointments. So after basically telling them I wasn’t going home and that my doctor did not want me to wait until my next scheduled scan (in early January) I was told to go have lunch and come back in an hour while they checked to see when they could fit me in and when my doctor needed the scan done. Geoff was unable to stay with me though because the appointment was now an hour later and he needed to get back to work.
During the scan the tech and I discussed how hard it had been for them to find the membrane dividing the babies. She spent about 20 minutes scanning me and then said that she was done what she needed to do but was having difficulty with that membrane again and was going to have someone else come in to take a look. Another tech came in a few minutes later and began scanning again. He left after about 10 minutes of scanning to check the results on his computer. After about 5 minutes he was back with a Dr. this time. They scanned me again and spent some time discussing different measurements they seemed to need. The words didn’t seem to co-ordinate with the membrane issue and at this point I began to worry. When he left again to check out the scans and didn’t come back for 20 minutes I knew something was wrong.
And when Dr. Hancock arrived to talk to me, I knew something was very wrong and asked him what it was. He told me that there was a concern with the growth of the babies and the sharing of nutrients. He explained that it appeared that one baby appeared to be getting too much while the other was getting none. I was to go to see high risk specialists the next day in London and he would be calling me by 4:30 with more info. They had me wait for a disk of ultrasound results to take with me and sent me on my way after taking my cell number.
I left the hospital in shock, trying hard not to cry. It just seemed too unbelievable that these little babes might be in trouble. I called Geoff and bawled but managed to get somewhat calm and agreed to meet him at our son’s school for our meeting with his teacher. I called my mom and cried on her answering machine and then tried my best to keep it together and drive back to home. I was so scared.
I made it 5 minutes outside of the city when my phone rang and it was the doctor. He said I needed to remain calm but that I needed to return to the hospital immediately as I was being sent to Toronto right away. He said to have Geoff come too and to meet him on the delivery floor.
And then I really wept. I could hardly talk when I called Geoff and our babysitter. It all seemed so unreal.
But reality didn’t really hit until I got to the hospital and spoke to Dr. Hancock. He explained that the doctors he’d spoken to in London told him to contact Mt. Sinai in Toronto and that specialist said, after hearing the results of the ultrasound that it was imperative that we come to Toronto right away. Dr. Hancock said that I would likely have surgery and be in Toronto for a week or so. And then he really scared me when he told me they would be giving me a shot of celesdone, a steroid given to strengthen premature babies lungs…they were afraid these babies were going to be born right away.
I cried and shook, my heart was breaking and my mind was racing with thoughts of these babies and the life I wanted for them. How could this be happening to me, to them, to our family???
Geoff arrived a bit later and met me at the door of the hospital. He just held me as I cried and tried his best to alleviate my fears. The next few hours were spent trying to reach those who needed to know while driving to Toronto.
We met with Dr. Wendy Whittle when we arrived at Mt. Sinai. She was amazing, very calming and assuring. She scanned me again and showed us the signs of this disease we now knew as Twin to Twin Transfusion Syndrome. She also was finally able to tell us that we were expecting 2 little boys.
Our babies were the same size, actually our recipient was about 15% smaller. Our donor baby had no amniotic fluid and no urine but other than that he looked very good.
Our recipient baby, however, appeared to be more affected. He had a full bladder, lots of amniotic fluid and his heart appeared to be somewhat affected, perhaps working harder than normal. The TTTS stages were explained to us and our babies were at Stage 3 with 8cm pockets and reverse flow for our recipient and no amniotic fluid or visible bladder but no other affects to our donor. Dr. Whittle seemed very confident that surgery would correct our problems and that our babies would be fine. She discussed our options and the outcomes of each. If we did nothing then there was a 100% chance we would lose one or both babies. We could try an amniotic reduction but this was not really an option at the stage of this disease that we were at. Or we could have the laser surgery preformed at Mt. Sinai, the only place where it was done in Canada. It did come with risks, one being pre-term labour and if that happened we would lose both babies as they were too small to be viable.
We left the scan feeling scared but confident that they would save our babies and correct the problem. The hospital brought a cot in for Geoff and gave us a private room. We sat together and cried and prayed…and talked. We were so scared but both of us tried to be strong. We talked about names for our boys and decided on Cameron and Cole. Geoff suggested that atleast one of the boys should be named after this man who was about to perform life saving surgery for them, the head of fetal medicine, Dr. Greg Ryan.
We fell asleep, or tried to, holding hands, both lost in a dream world of worry and stress.