I"ve been searching for blogs of other TTTS families...actually found a few that I really want to watch and they are listed at the bottom of my other blog as I am on there more than here... usually anyway. There is a link to my other blog on here (I think) as well.
One of the other mom's wrote some amazing words in the days after she lost one of her twins in utero. She echo's my thoughts so much so I'll post some of her blog and comment on it afterwards....
We find ourselves torn between two very real, very different emotions. We continue to go from one extreme to another in a matter of moments and it is confusing, exhausting and horrifying. I have asked myself how can God be in this? over and over again, while moments later I ask myself how can God not be in this? It is, in fact, more comforting to know that God is in this and has been a part of this from the very beginning than to assume he wouldn't be a part of causing me so much pain. He is part of this pain and he sees my pain. We don't want to hear that God needed my child in heaven or that he was too sweet for this world. We know that God does not need anything from us, including our children. He has all he needs, we just have the privilege of getting to be a part of his story. One day we'll have answers to our deepest hurts, or perhaps one day in the grand scheme of things our pain and suffering will make sense. For right now we do not try to make sense of it because we will exhaust ourselves again and again.
The lines that touched me most were the ones about God being with us and not against us and most especially the part about not needing to hear that God 'needed my child in heaven or that he was too sweet for this world'. I have never felt this way, I have never, when any child died long before their time, said that God had a plan for this child, that they had a job for them in Heaven. My God doesn't work that way, He doesn't take from me what he knows I need. And though it is tough some days to feel like it is a privilege to be a part of this part of his story, I know that it is. It is a privilege to know that I am being shown how to appreciate life and that by suffering like He did when his son died, by suffering as Jesus did, that I am becoming a better and stronger person. I know that I have grown as a person and although my life may be changed forever because of our loss it may not always feel like it is for the worse. Some day it will all make sense....likely when I hold Cole in my arms again.
And so in these last moments of 2009...a year that changed me forever as did 2008...I am counting the blessings that He has given me. I have such an amazing family... a loving husband who may drive me crazy some days but he also DRIVES me to reach harder and further to 'make it work' and to forgive, forget, move on and look beyond the surface of the things that piss you off on a daily basis. I have a zanny redheaded 6 year old who snuggles and hugs, shocks me with his intelligence and teaches me about patience everyday. I am lucky to be the mom of a little lovable, laughable, huggable and adorable 3 year old who tells me daily how much he loves me and cracks me up many times a day with his stories, humour and hilarious words. And I am blessed to be the mom of twin boys who love me here on Earth and in Heaven. I know by the adoring gazes, huge smiles, belly laughs, slobbery kisses, all around happy personality and mommy only looks I get from Cameron that Cole lives within him and is with me each day. Cameron is a miracle, he came so close to leaving us at his TTTS diagnosis and surgery, to being brain damaged then and again when he was anemic after Cole passed away, to being born too early and way way to small when my water broke and he wasn't even on the growth charts for his age....weighing a mere 650 grams....and likely would have had some major delays and even surviving inside without any amniotic fluid for 8 weeks. He shows me how good God is and together with his twin brother, inspires me to be a better person.
I don't make New Year's resolutions but I am promising a few things this year that are super important:
I will find a way to channel my energy that is used for grief to find a way to honour my twin sons, their TTTS journey and Cole's passing. This might be a fundraiser, it might be support site for others or maybe a pamphlet to be handed to other parents when they learn they are affected by this awful disease.
I promise to breath deeply, smile more, laugh more, love more and snuggle those boys as often as I can.
I will worry less and enjoy the moment more.
I could promise to live a healthier life but what fun would that be!!! Actually I will do my best at that too!!!
So Happy New Year to you all! Farewell 2009, you have taught me so much!
Thursday, December 31, 2009
Tuesday, December 29, 2009
A Holiday Wish
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
Rascal Flatts
This is a song that is on my other blog...the place a post all my pics of my boys and our family...a place of joy. This song has been stuck in my head for days and I thought it was because I had wishes for Cole that just didn't happen but then I sat and really listened (okay admittedly I looked up the words online) and realized that maybe, just maybe, this was Cole speaking to me. I am sure that he wishes this for his mommy just as his mommy wishes this for his brothers. I'd say I wish it for him too...and I do...but I'm just not sure that I feel like he got the better end of the deal yet. I know I need to feel that way...that I need to understand and appreciate that where Cole is, in Heaven, is so much better than being here with us. But I'm not sure I can feel that way all the time... I just miss him and wish he was here too much. The last few days have been filled with wishful moments. I wanted to have two babies on my knee while we opened presents, I wanted to open a present from my son and hug him to thank him for it instead of tearing up and wishing I could.
This is the present the Cole (with daddy's help) gave me....so very fitting.
And this is the message I had for Cole for this our first Christmas without him
Merry Christmas my sweet son, this first one without you is so hard. I miss you so very much. The ornament that Daddy helped you to give to me is so very perfect. I will always have your heart and you will always have mine. Enjoy this special day in Heaven...it is a season of Miracles and your twin brother Cameron shows me each and every day just what a miracle is!
I was so inspired to make things better before Christmas and though I still want to I am having a hard time today with this. I don't see why people think they have the right to tell me, even carefully, that they think I should move on, not be so public with my grief, not let my grief affect my other kids or really even accept that others don't know what to say. I know that I am doing the best I can and I am getting better. Tough days, seasons and times will happen. I have to embrace them. Someone, pretty sure it was another one of my wonderful cousins (thanks Deb) said many months ago that the moments that catch me up, the twin moments especially, the really hard moments....those are the times when Cole is showing himself to me most, when he is saying hello and telling me he misses me too.
So I've decided I have to embrace these crappy times and not push myself to be someone or somewhere that I am not. I'll make it through this, I know I will. I will find the focus I need to move within this grief and use the energy I have for it to be positive and pro-active. I have the plan in mind, I have the idea and the focus...I just need to keep working to ensure I find the right fit for my energy.
Thanks for reading, thanks for supporting me, thanks for being my friend!
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
Rascal Flatts
This is a song that is on my other blog...the place a post all my pics of my boys and our family...a place of joy. This song has been stuck in my head for days and I thought it was because I had wishes for Cole that just didn't happen but then I sat and really listened (okay admittedly I looked up the words online) and realized that maybe, just maybe, this was Cole speaking to me. I am sure that he wishes this for his mommy just as his mommy wishes this for his brothers. I'd say I wish it for him too...and I do...but I'm just not sure that I feel like he got the better end of the deal yet. I know I need to feel that way...that I need to understand and appreciate that where Cole is, in Heaven, is so much better than being here with us. But I'm not sure I can feel that way all the time... I just miss him and wish he was here too much. The last few days have been filled with wishful moments. I wanted to have two babies on my knee while we opened presents, I wanted to open a present from my son and hug him to thank him for it instead of tearing up and wishing I could.
This is the present the Cole (with daddy's help) gave me....so very fitting.
And this is the message I had for Cole for this our first Christmas without him
Merry Christmas my sweet son, this first one without you is so hard. I miss you so very much. The ornament that Daddy helped you to give to me is so very perfect. I will always have your heart and you will always have mine. Enjoy this special day in Heaven...it is a season of Miracles and your twin brother Cameron shows me each and every day just what a miracle is!
I was so inspired to make things better before Christmas and though I still want to I am having a hard time today with this. I don't see why people think they have the right to tell me, even carefully, that they think I should move on, not be so public with my grief, not let my grief affect my other kids or really even accept that others don't know what to say. I know that I am doing the best I can and I am getting better. Tough days, seasons and times will happen. I have to embrace them. Someone, pretty sure it was another one of my wonderful cousins (thanks Deb) said many months ago that the moments that catch me up, the twin moments especially, the really hard moments....those are the times when Cole is showing himself to me most, when he is saying hello and telling me he misses me too.
So I've decided I have to embrace these crappy times and not push myself to be someone or somewhere that I am not. I'll make it through this, I know I will. I will find the focus I need to move within this grief and use the energy I have for it to be positive and pro-active. I have the plan in mind, I have the idea and the focus...I just need to keep working to ensure I find the right fit for my energy.
Thanks for reading, thanks for supporting me, thanks for being my friend!
Tuesday, December 22, 2009
Time for a change
Today I awoke in awe of the beautiful day outside...the snow on the trees and houses lightens my heart and inspires me to make this a wonderful next few days. I can't change what happened or how people treat me, I can only change myself and the way I treat the world.
I thought of Cole first thing when I saw the snow and know it was a message from him and HIM...God knows I need to see the world brighter, clearer and filled with the good He gave us. I have been very down for days and after a message on facebook yesterday that I posted about asking others to remember that I am not the person I used to be nor will I ever be again I received a message from my cousin Roxanne.
She reminded me that although I am sad and lost right now I have 3 boys who aren't...they need me here and they don't really get that sadness takes over. She lost her sister when she was around 15 and she spoke to me about what loss of sibling can do to you and your family. It made me realize that I need to be here for the whole family, not just for Cole.
And from that I realized that a lot of times I am being just plain selfish. I post sad things on facebook because I don't want anyone to forget Cole or the journey we've taken. I don't want others to forget because I know I never will so why should they. But that is selfish as is the attention I get because of my public grief. God didn't put me in this situation to see how much attention I can get. Remembering my son through sadness and attention isn't right, healthy or the way He intended it to be. Remembering him by honoring him, by raising awareness of TTTS and identical twin pregnancy issues, by raising funds for Mt. Sinai and research and support...those are all ways I can remember and praise Cole for being my wonderful son.
I am going to try very hard not to post things that are hard to read, evoke pity or sadness. It is time to show the world the wonderful things Cole brought to our lives and to put the energy I put into grieving into something more positive.
I want this, I need this....and I promise I WILL do this!!!
I thought of Cole first thing when I saw the snow and know it was a message from him and HIM...God knows I need to see the world brighter, clearer and filled with the good He gave us. I have been very down for days and after a message on facebook yesterday that I posted about asking others to remember that I am not the person I used to be nor will I ever be again I received a message from my cousin Roxanne.
She reminded me that although I am sad and lost right now I have 3 boys who aren't...they need me here and they don't really get that sadness takes over. She lost her sister when she was around 15 and she spoke to me about what loss of sibling can do to you and your family. It made me realize that I need to be here for the whole family, not just for Cole.
And from that I realized that a lot of times I am being just plain selfish. I post sad things on facebook because I don't want anyone to forget Cole or the journey we've taken. I don't want others to forget because I know I never will so why should they. But that is selfish as is the attention I get because of my public grief. God didn't put me in this situation to see how much attention I can get. Remembering my son through sadness and attention isn't right, healthy or the way He intended it to be. Remembering him by honoring him, by raising awareness of TTTS and identical twin pregnancy issues, by raising funds for Mt. Sinai and research and support...those are all ways I can remember and praise Cole for being my wonderful son.
I am going to try very hard not to post things that are hard to read, evoke pity or sadness. It is time to show the world the wonderful things Cole brought to our lives and to put the energy I put into grieving into something more positive.
I want this, I need this....and I promise I WILL do this!!!
Monday, December 14, 2009
An Angel Remembered
The day was okay after all...lots of tears but a feeling again of some closure...kind of like I needed to relive the whole experience before I could move ahead. And so I created this video of photos, information and memories for everyone to see...and maybe, hopefully people can somewhat understand how hard this is... to live without your child but to see them everyday, to worry about how your little survivor will cope when he learns about the sacrifices of his identical twin and to wonder just what it must be like for him to be missing his twin, his brother, his friend.
Sunday, December 13, 2009
The worst day of my life
I hardly slept last night...I can't waking up thinking that I should be feeling horrible, that I should be thinking of nothing else but the horrible news we learned one year ago today but instead everything was just jumbled up crazy dreams. And so I thought maybe this isn't going to be so bad after all....maybe it'll be just another day.
And then I woke up and reality set in and I've been fighting to be my composure ever since.
How can one little boy who I never even truly met affect me so deeply...because he's my son, my flesh and blood, identical in looks to the little miracle that blesses me each with his laughs, smiles, hugs and kisses. I wanted a life with him so bad and I wanted to be his mommy. I thought I was doing so much better in this grief journey but the last few weeks have proven to me that no matter how far I get there will always be things that will send me spiraling backwards. Right now my heart feels ripped apart, my arms ache to feel Cole in them and my desire to turn back time is so very intense. I WANT MY BABY BACK!!!!
I am pretty certain this day is a write off...unfortunately I can't just curl up in my bed and spend the day feeling sorry for myself. And yes I know I should say fortunately...but right now I just want to do that. Instead I will be busy with my family and out at church for our Christmas concert. Hopefully that will help with this horrible day. Later this afternoon we will be preparing sky lanterns for a balloon launch for Cole. We will draw on beautiful paper lanterns, create messages of love and wishes for Cole. When it is dark we will travel out to his garden (if we can find it in the snow) and light the lanterns and watch them rise to Heaven.
Right now I am finding it very hard to write, to talk about how I feel so I think I will attach the next segment of the story that I've written...the account of Dec. 13, 2008. I may come back later and write some more and I know that tonight or tomorrow I will post the tribute video I've made for my little angel.
Thanks for reading this, for being my friend...for supporting me in my worst moments!
The next morning I awoke early and felt strong kicking, especially on Cole’s side of my uterus. I was so confident that this meant good news and I emailed or called everyone to tell them how things had gone the day before.
At 11:00 we arrived at the children’s hospital next door and the fetal echo began. 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. Instead 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.”
The doctor told us that all seemed fine with the other baby. We asked him what this meant for the other survivor and he said everything should be fine but Dr. Ryan will confirm that. But what about the other baby…what will happen now was my question. And the most devastating (and incorrect answer) was given to me…your body will just absorb him.
And 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, 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.
We were quietly left alone in this area of the heart clinic while the doctor went to call for a porter for me and to let the floor nurses know what had happened. We held each other and sobbed. Geoff was having a very tough time remaining still. He kept leaving me and going to make calls to let our family and close friends know.
Later, after we returned to Mt. Sinai my parents called to say they were on their way…which of course evoked another round of sobbing. I just couldn’t believe this was all happening. By the time they arrived we learned we had another crisis on our hands….
Dr. Ryan had come in after the staff called to tell him what had happened. He scanned me again and confirmed that Cole’s heart had been very very sick and he’d gone into heart failure. His abdomen was even more full of fluid now, in death, then it had been the night before. His concern now was Cameron as his MCA (medial cranial artery) readings were showing that he was now anemic. Dr. Ryan was very confident that all vessels had been cauterized and this change in his health was due to a final rush of fluid from him to Cole as the last vessels were sealed off. Much scanning and rescanning was done, the question seemed to be was the MCA high enough to warrant a blood transfusion…another risky procedure. 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. Eventually it was determined that it needed to be done, very soon, and was scheduled for as soon as the blood was available.
My parents arrived and we were all so very emotional. My parents had been so very overjoyed about us having twins. My mom had shopped her heart out just weeks before buying two of everything (well actually 3 since my brother and his wife were also expecting). My dad is a fairly emotional guy when it comes to us kids, especially his only daughter. It was a very tough afternoon and evening waiting for the blood to be ready.
My dad stayed with me for the procedure which was very touching and very comforting. 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 use a needle similar to an amnio needle and they put it in at 2 or 3 different places. They remove a sample of blood and check the hemoglobin levels right there in the procedure room. Cameron was given 40 cc’s of blood and after cleaning me up I was wheeled back to my room…to wait and hope and pray that my surviving twin would indeed survive, that there was no damage to his brain.
The next day they checked his MCA and thankfully it was already coming down. They checked my cervix…thankfully still closed and long…and sent me home with follow up and MRI’s scheduled for later that week. That drive home was one of the strangest that I think that I will ever have, it seemed to take forever and yet was like we had never left Monkton. As we drove into town we both cried as we realized how completely and forever different our lives were from when we left for work only 3 days before.
Saturday, December 12, 2009
Saving their lives....one year later
Today I woke up remembering how I woke up a year ago fearful but so very optimistic. I laid there thinking about what was happening to my babies and wondered how our boys (I was so happy to finally know they were boys)we handling things in there. I imagined matching boy 'stuff'...toys, clothes, hockey equipment. I couldn't sleep so I got up and found a computer and wrote emails and online messages to let everyone know what was going on. Never did I imagine how quickly things were changing.
Cameron, is, of course, the reason I was up at 7:00 am today and today he seemed hard to comfort. He wasn't upset but seemed agitated...I wonder if it bothers him as much as it bothers me that this was the last 24 hours or so that he and his twin brother were alive together inside of me one year ago. I looked at him, held him close and realized we saved him a year ago today...that we came within hours of NOT saving him. Cole's body was giving out...the rapid progression of the TTTS proved that. How could I not be grateful to Cole for holding on for enough time for the surgery that connected him to Cameron to happen so that when he died he didn't take Cameron with him.
And yet how can I not wish that we'd known just a few days sooner so that the progression wouldn't have been so great? How can I not wish that TTTS had never happened? How can I not wish my sweet baby Cole was still here????
Below is another excerpt from the story I am writing though I'm not sure anyone is really reading these things. It's an account of what happened one year ago today....
On the morning of December 12 Dr. Ryan, met with us and scanned me at length again. He was a very reassuring person but seemed to be all business. We felt at ease with him but knew from his demeanor that this was a very serious situation. He explained TTTS to us again and discussed our odds. He said there had already been some changes in our recipient, Cole’s, heart and the fluid pockets had increased 2 cm’s in the 9 hours since I was last scanned. We wanted to do whatever we could to save the boys so the surgery was confirmed and booked. They began discussing the best place to enter the uterus and this seemed to take a long time. I had an anterior placenta and what I now know a velamentous cord insertion on our recipient though none of those terms were given to us. We did hear terms like acute TTTS but had no idea what that meant. I have since learned that having a velamentous cord insertion usually means poor growth in twins, often because they also have a poor share of the placenta. It is very rare to have both the cord problem and unequal share with the recipient baby…Cole…and a share of less than 25% does not often mean that baby will survive. Basically they just outgrow the placenta they have and do not have enough nutrients to survive. An anterior placenta is very difficult to do surgery on and some specialists won’t do the surgery if you have one. But as I said, I knew none of this at the time, only that I HAD to have surgery as soon as possible to save even just one of my babies. And so we sat in my room and waited for hours for the operating room to be ready and prayed and planned for these little boys growing inside of me.
The surgery happened at 5:00 that afternoon. I did not respond well to what was going on and had problems with anxiety attacks throughout as I drifted in and out. I think I was just so overtired that my body was rebelling. Dr. Ryan came to speak to us after the surgery and told us that he was very confident that he had gotten all of the affected vessels and that there were quite a number of them. The most serious ones were located right at the area where the membrane attached to the placenta and a septostomy had to be created in order to get to them. This, in essence, meant that our boys were now mono mono twins and their cords could entangle at any point. He told us this would mean frequent ultrasounds and likely hospitalization after 28 weeks. When this hole had been created, my husband later shared with me, our donor baby reached through it towards his very sick twin…like he was reaching out and reassuring him. Dr. Ryan went on to tell us that when the checked the boys at the start of the surgery that the fluid pockets had increased again and that Cole’s abdomen was completely full of fluid (known as hydrops) which now meant our TTTS was at Stage 4. He said his heart was also much sicker than before and because of this he would be sending me for a fetal echo cardiogram the following morning.
Cameron, is, of course, the reason I was up at 7:00 am today and today he seemed hard to comfort. He wasn't upset but seemed agitated...I wonder if it bothers him as much as it bothers me that this was the last 24 hours or so that he and his twin brother were alive together inside of me one year ago. I looked at him, held him close and realized we saved him a year ago today...that we came within hours of NOT saving him. Cole's body was giving out...the rapid progression of the TTTS proved that. How could I not be grateful to Cole for holding on for enough time for the surgery that connected him to Cameron to happen so that when he died he didn't take Cameron with him.
And yet how can I not wish that we'd known just a few days sooner so that the progression wouldn't have been so great? How can I not wish that TTTS had never happened? How can I not wish my sweet baby Cole was still here????
Below is another excerpt from the story I am writing though I'm not sure anyone is really reading these things. It's an account of what happened one year ago today....
On the morning of December 12 Dr. Ryan, met with us and scanned me at length again. He was a very reassuring person but seemed to be all business. We felt at ease with him but knew from his demeanor that this was a very serious situation. He explained TTTS to us again and discussed our odds. He said there had already been some changes in our recipient, Cole’s, heart and the fluid pockets had increased 2 cm’s in the 9 hours since I was last scanned. We wanted to do whatever we could to save the boys so the surgery was confirmed and booked. They began discussing the best place to enter the uterus and this seemed to take a long time. I had an anterior placenta and what I now know a velamentous cord insertion on our recipient though none of those terms were given to us. We did hear terms like acute TTTS but had no idea what that meant. I have since learned that having a velamentous cord insertion usually means poor growth in twins, often because they also have a poor share of the placenta. It is very rare to have both the cord problem and unequal share with the recipient baby…Cole…and a share of less than 25% does not often mean that baby will survive. Basically they just outgrow the placenta they have and do not have enough nutrients to survive. An anterior placenta is very difficult to do surgery on and some specialists won’t do the surgery if you have one. But as I said, I knew none of this at the time, only that I HAD to have surgery as soon as possible to save even just one of my babies. And so we sat in my room and waited for hours for the operating room to be ready and prayed and planned for these little boys growing inside of me.
The surgery happened at 5:00 that afternoon. I did not respond well to what was going on and had problems with anxiety attacks throughout as I drifted in and out. I think I was just so overtired that my body was rebelling. Dr. Ryan came to speak to us after the surgery and told us that he was very confident that he had gotten all of the affected vessels and that there were quite a number of them. The most serious ones were located right at the area where the membrane attached to the placenta and a septostomy had to be created in order to get to them. This, in essence, meant that our boys were now mono mono twins and their cords could entangle at any point. He told us this would mean frequent ultrasounds and likely hospitalization after 28 weeks. When this hole had been created, my husband later shared with me, our donor baby reached through it towards his very sick twin…like he was reaching out and reassuring him. Dr. Ryan went on to tell us that when the checked the boys at the start of the surgery that the fluid pockets had increased again and that Cole’s abdomen was completely full of fluid (known as hydrops) which now meant our TTTS was at Stage 4. He said his heart was also much sicker than before and because of this he would be sending me for a fetal echo cardiogram the following morning.
Friday, December 11, 2009
One year ago....
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.
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.
Monday, December 7, 2009
World TTTS Awareness Day
World TTTS Awareness Day
http://www.worldtttsawarenessday.org/media/images/homepage_globe.jpg
"WORLD TTTS AWARENESS DAY is an international mobilization effort created by The Twin to Twin Transfusion Syndrome Foundation to increase awareness of the #1 problem facing multiples. It is crucial for women to get an ultrasound in the first trimester to identify multiples and then to determine whether there is one placenta or two. Women must learn the warning signs of TTTS, the 15 questions to ask at each ultrasound, and the available treatment options. World TTTS Awareness Day is about empowering parents and is filled with messages of Hope, Help and Encouragement. Your babies can make it and be healthy. Don't ever give up. Please, Get Educated, Get Ultrasounds, Ask Questions, Get Treatment and Get Involved! This day is also a remembrance day for all the babies who have had TTTS. Candles will be lit tonight across the world during the vigil and messages may also be left for your babies through lighting online candles."
We lit our candles and sat quietly and thought about where this journey has taken us. Awareness is the key. As I told our exchange student today, we knew TTTS existed but had no idea how serious it was or how devastating. We had no idea that identical twins had so many serious life altering issues that can occur...we had no idea that we could be a ticking time bomb. Our doctor did see me often enough, I did have my scans early enough and frequently enough but that was only because of scheduling mix ups and necessity for repeats due to the size of the boys. All identical twins should see a high risk specialist if one is available...there were tons available to us in London. But NONE of this would have saved our sweet Cole, nothing different would likely have happened except a lot of added early stress. God does work in wonderful ways!
Missing you so much today my TTTS angel baby...and loving you so much too. Amazed by you my TTTS survivor and loving you till I feel like I could burst. I love you both so much!!!
Tuesday, December 1, 2009
Kleenex and Candle Friends
"We all need 'Kleenex and Candle' friends when we suffer a loss. Compassionate companions who give us permission to cry and offer a kleenex or their tears. When the darkness of discouragement comes they encircle us. Our heroes of hope light the way to brighter tomorrows and to the One who is truth and our eternal encouragement. And at the right season, we can pass on what we have received to other....a Kleenex and a candle" Kathe Wunnenberg
Devotion #21 - Who Do You Say I am?
I have become so lax in my blogging. I am not sure if that means I don't 'need' this blog as much or if I am just so messed up lately that I can't bring myself to write here....I am thinking the later though the first one seems a healthier reason!
I feel like I am so up and down lately. On Sunday I wanted to write because I was so down and had so many thoughts going through my head....but I ran out of time in the day and now the feelings are as intense...but here is what lead to them.
It began with the feeling of loneliness after a fairly unsuccessful holiday/birthday party that we had on the weekend. I felt like I just had no friends and that no one really cares. It's funny when I look back to when this journey began and people told me all the time how brave I was, how in awe they were of me and how they looked up to me. I had so many people praying for us, emailing me all the time, writing on our caring bridge blog etc. But as time goes on those people seem to disappear from my life, I guess I no longer attract the attention and pity of others. It is a very lonely feeling. It makes me realize even more so that people just don't get it... they don't understand that although we lost Cole almost a year ago (I can't believe I have to deal with that too) and the stress and strain of all that was the remainder of the pregnancy ended last February with the arrival of our boys...it doesn't end for me there. It will NEVER end for me, Cole will forever be a part of my life and a part of my heart. I can't MOVE on, I don't want to MOVE on...I want to cope, to learn to live without him but it's not moving on...just coping along.
I was also (well am also) reading an Amish Christian fiction book that had a strong focus in the section I was reading on Sunday about God's will and learning to accept that things are God's will.
I think I have accepted that becoming pregnant with twins was God's will. I have accepted that our twins getting the rare and fatal disease TTTS was God's will. I have accepted that losing Cole and keeping Cameron was God's will. I am finding it hard to accept that losing the ability to connect with those that I considered friends is God's will. And guess what...I am pretty sure it's not. I am pretty certain that God brought this situation to our lives and to our friends lives to bring us the opportunity to build stronger relationships and those that aren't up for the challenge...well I am not going to go there.
But although it was God's will to take Cole it seems to be the frame of mind of so many to think that only that it was God's will to make Cameron safe, to focus on the positives that came out of our journey. Why can't they see that there are negatives too that are God's will too? I can see that, I can accept that and I am the one who probably hurts the most because of it. I know that God doesn't only give us what we want, doesn't only give us an easy life. If he did than how would be build strength and character, how would be understand the trials that Jesus endured for us? Why is that people can't talk about the sadness, the despair and the loss with me? Why does it have to be so hard to say to me "I am so sorry that God took your son from you and that you are hurting so but I know that it is his will and that someday we will all understand why it happened. Until then I am here for you, I will hold you and cry with you...I will give you my kleenex and I will be here for you always".
The devotion today is about preparing yourself for the situations that you may face regarding your loss. "How many children do you have?" or often for me "How many boys do you have?". How we answer that depends on our moods but most days I am pretty brutally honest. I don't really care how uncomfortable it makes people...I want to honour my son and I want to include him everywhere in my life. I want everyone to know how awesome it is to be the mom of twins and how special Cameron is to be a twin. And if I don't answer them honestly then I can be sure my kids will do it for me...and then everyone is left feeling uncomfortable.
My loss has changed me forever. I no longer feel confident in what I think is my journey of life. I don't know where I am going or even where I've come from at times. I don't know who my friends are anymore...well that's not true. I know, for certain, who the true friends are. I know that they are the ones who talk to me about Cole and let me vent without reminding me how lucky I am that Cameron is still alive. But I don't know if I should give up on those that can't seem to support me, I don't know how to support them either.
What I do know is that I appreciate life so much more now. I know that God has given me 4 perfect gifts, little miracles to love. I know that I am meant to do big things...just not sure what they are. I feel very compelled to do something for others who suffer like we have, others affected by TTTS, others sent to Toronto to Dr. Ryan and even to other TTTS specialists in the world. I know that God has given me the gift of the gab (as my family says) for a reason...I am blessed with the ability to write well and I want to use this gift.
I don't if I am ready to share my love for God and the insights I have about our journey with everyone. Not because I am afraid to be a 'public Christian' but rather because I am not sure what I feel and what I want to do with it. I do tell everyone that there are a great many things this side of Heaven that we are not meant to understand but that we had better do as much as we can to ensure we get There.
And as I gear up for the next 13 days...days where tears will come so easily as I remember all that happened last year at this time, days where I don't want to go anywhere and when I can't hold Cameron tight enough, or days when seeing Cameron just makes me sob and sob....I know that I will get through this because I am a child of God and He will see me through this. His love will surround and protect me. His love will NOT stop it from hurting, it will NOT make it go away, it will NOT erase what happened. But it WILL make it easier and He WILL provide me with people in my life to help me get through it. This much I am sure!
Devotion #21 - Who Do You Say I am?
I have become so lax in my blogging. I am not sure if that means I don't 'need' this blog as much or if I am just so messed up lately that I can't bring myself to write here....I am thinking the later though the first one seems a healthier reason!
I feel like I am so up and down lately. On Sunday I wanted to write because I was so down and had so many thoughts going through my head....but I ran out of time in the day and now the feelings are as intense...but here is what lead to them.
It began with the feeling of loneliness after a fairly unsuccessful holiday/birthday party that we had on the weekend. I felt like I just had no friends and that no one really cares. It's funny when I look back to when this journey began and people told me all the time how brave I was, how in awe they were of me and how they looked up to me. I had so many people praying for us, emailing me all the time, writing on our caring bridge blog etc. But as time goes on those people seem to disappear from my life, I guess I no longer attract the attention and pity of others. It is a very lonely feeling. It makes me realize even more so that people just don't get it... they don't understand that although we lost Cole almost a year ago (I can't believe I have to deal with that too) and the stress and strain of all that was the remainder of the pregnancy ended last February with the arrival of our boys...it doesn't end for me there. It will NEVER end for me, Cole will forever be a part of my life and a part of my heart. I can't MOVE on, I don't want to MOVE on...I want to cope, to learn to live without him but it's not moving on...just coping along.
I was also (well am also) reading an Amish Christian fiction book that had a strong focus in the section I was reading on Sunday about God's will and learning to accept that things are God's will.
I think I have accepted that becoming pregnant with twins was God's will. I have accepted that our twins getting the rare and fatal disease TTTS was God's will. I have accepted that losing Cole and keeping Cameron was God's will. I am finding it hard to accept that losing the ability to connect with those that I considered friends is God's will. And guess what...I am pretty sure it's not. I am pretty certain that God brought this situation to our lives and to our friends lives to bring us the opportunity to build stronger relationships and those that aren't up for the challenge...well I am not going to go there.
But although it was God's will to take Cole it seems to be the frame of mind of so many to think that only that it was God's will to make Cameron safe, to focus on the positives that came out of our journey. Why can't they see that there are negatives too that are God's will too? I can see that, I can accept that and I am the one who probably hurts the most because of it. I know that God doesn't only give us what we want, doesn't only give us an easy life. If he did than how would be build strength and character, how would be understand the trials that Jesus endured for us? Why is that people can't talk about the sadness, the despair and the loss with me? Why does it have to be so hard to say to me "I am so sorry that God took your son from you and that you are hurting so but I know that it is his will and that someday we will all understand why it happened. Until then I am here for you, I will hold you and cry with you...I will give you my kleenex and I will be here for you always".
The devotion today is about preparing yourself for the situations that you may face regarding your loss. "How many children do you have?" or often for me "How many boys do you have?". How we answer that depends on our moods but most days I am pretty brutally honest. I don't really care how uncomfortable it makes people...I want to honour my son and I want to include him everywhere in my life. I want everyone to know how awesome it is to be the mom of twins and how special Cameron is to be a twin. And if I don't answer them honestly then I can be sure my kids will do it for me...and then everyone is left feeling uncomfortable.
My loss has changed me forever. I no longer feel confident in what I think is my journey of life. I don't know where I am going or even where I've come from at times. I don't know who my friends are anymore...well that's not true. I know, for certain, who the true friends are. I know that they are the ones who talk to me about Cole and let me vent without reminding me how lucky I am that Cameron is still alive. But I don't know if I should give up on those that can't seem to support me, I don't know how to support them either.
What I do know is that I appreciate life so much more now. I know that God has given me 4 perfect gifts, little miracles to love. I know that I am meant to do big things...just not sure what they are. I feel very compelled to do something for others who suffer like we have, others affected by TTTS, others sent to Toronto to Dr. Ryan and even to other TTTS specialists in the world. I know that God has given me the gift of the gab (as my family says) for a reason...I am blessed with the ability to write well and I want to use this gift.
I don't if I am ready to share my love for God and the insights I have about our journey with everyone. Not because I am afraid to be a 'public Christian' but rather because I am not sure what I feel and what I want to do with it. I do tell everyone that there are a great many things this side of Heaven that we are not meant to understand but that we had better do as much as we can to ensure we get There.
And as I gear up for the next 13 days...days where tears will come so easily as I remember all that happened last year at this time, days where I don't want to go anywhere and when I can't hold Cameron tight enough, or days when seeing Cameron just makes me sob and sob....I know that I will get through this because I am a child of God and He will see me through this. His love will surround and protect me. His love will NOT stop it from hurting, it will NOT make it go away, it will NOT erase what happened. But it WILL make it easier and He WILL provide me with people in my life to help me get through it. This much I am sure!
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