So today was... really awesome. I had my moments...I cried walking this morning but that was the point of my walk...to meditate, reflect, pray and feel sorrow. I came back sad but okay and remained very okay until we exited onto the Gardner and got closer and closer to Mt. Sinai. (oh wait, most of you don't know how I spent my day...well that is a blog for tomorrow but needless to say I was back where it all began) I began to feel those tears, those memories of that very first journey surrounded me and frankly I thought I might lose it. But I didn't...I let myself have my moment and then I was totally okay. Seeing Dr. Ryan was AWESOME...we spent a ton of time with him...again a blog for tomorrow. We left that part of the Mt. Sinai world and felt good. We went to the hospital, to the place where Cole's heart beat for the last time and it truly was ok. I felt peace, calm and hope. I won't say I felt joy...but I had enough of that to sustain me earlier.
I did okay til we went over to Sick Kids, where our world was shattered with the news that Cole's heart had stopped beating. I did okay, fine really, and then I saw the sign...Cardiology unit and saw the place where I sat and cried as we let people know and waited for the porter to return me to my room at Sinai.
But I left there feeling at peace, feeling the presence of my son and knowing that miracles happened at that area of Toronto.
I came home and decided that, although I am very much at peace and feeling content, I do feel like I need to share a piece of myself from that time. I have decided to share a segment of my book...the one I vowed to write in 2011...yup, no where near done LOL! It isn't the part where joy happens but I sought it out in the last few days because I do remember the joy that I felt when I learned my babies were boys, the optimism I felt about our surgery and about my boys future. Things didn't turn out the way I wanted them too but life has a way of working out okay in the end and bringing joy out of that....again, tomorrow's blog.
For now I leave you with a very unedited segment of my book. I'd love to hear comments, love to know what people think.Just a point of info..it is written in correspondence form... letters, emails, texts, IM, message board posts, chats, etc. Some of it is actually things I wrote at the time and some is a bit of a twist to the actual happenings that I did in order to tell the story. Hopefully those that I have 'used' to help me write this will be okay with that...guess I should have asked them first LOL....
Dear Cameron and Cole; Dec. 11/08
You have names and we have dreams of blue, of trucks, of sandboxes and mud, of bikes and cars and hockey and oh so much more. Boys, boys, boys...wow am I outnumbered. Daddy and I didn’t actually discuss which one of you is which...I guess we’ll leave that till later...maybe even until the day we meet you. Unfortunately I am writing this letter to you on hospital ‘stationary’...from a place that I am very certain is going to be a very important part of your stories when you grow up... Mt. Sinai Hospital in Toronto...and I am writing because I am just so damned scared about what is happening inside of me.. and so sorry that my body has done this to you. I never ever dreamed we would have any of these type of complications...I skipped those chapters in the twin books...I thought how can this small amount, 15-20% of all identical twin pregnancies, really be something that would happen to us.
I feel so bad for you both. You little baby B are all stuck in there with no room to move and no fluid around you. And Mr. Baby A with so much around you and your little heart working extra hard.
Dr. Whittle seems very optimistic that we’ll be leaving here in a few days with two very healthy babies safe inside me. She explained what treatments could be done to help this problem. The scariest was basically nothing other than monitoring and delivering if and when it reaches a crisis stage. Effectively that is a death sentence to both of you as we are already at a pretty serious stage of the disease and you were both too small to survive life outside the womb. Another treatment involves using a long needle, entering the amniotic sac of baby A and draining off as much of the extra amniotic fluid as possible. This procedure would not stop the TTTS from happening and had a higher chance of neurological impairments but it might buy us some time. The final treatment we were told about is the specialty of Mt. Sinai and is, in fact, the only place in Canada that successfully performs this procedure regularly. It involves inserting a laser in through my abdomen wall and into the uterus. They will use a scope to guide this laser and your dad and I will be able to see you inside of my womb. The risks for both of the last procedures involve things like infection and preterm labour but unlike the amnioreduction, laser treatment will eliminate the TTTS. The success rate on it is a bit scary for us... 50-60% chance of saving both babies and 90% chance of saving one baby. But without the surgery the outcome is the scariest.. 100% chance of losing one or both of you. And even if we don't lose you both, if a recipient baby, you Mr. A, passes away (and she was open that this is far more likely than baby B passing) that the chances of having a survivor are between 6-10% and having a healthy survivor really has a 0% chance of happening.
Daddy and I were in tears but we agreed that we wanted to do what we could to save you both and we asked to meet with Dr. Ryan, the man who will perform this surgery and ultimately be the one responsible for trying to save your lives.
Oh my little sweet boys, I pray that you will be okay. I’ve asked God to make sure everything goes well, that you are safe from this awful disease and I am safe from the complications of surgery. I asked him to give us at least another 10 weeks or more before we meet you both and tell you how much you mean to us. God is good, He’ll look out for all of us.
So much love to you, my sweet miracles,
Hey there! Just tried to call but am assuming you are on your way to Cheryl’s to get the boys and don’t have your phone with you. Thanks again to you for going to get the boys and please give my eternal gratitude to Cheryl for keeping them overnight and looking after the dog for us. I wish I could have found you yesterday in time.... I just needed a good chat with my mommy as the crazy crisis began.
I am feeling okay this morning. Tired and worried. I didn’t sleep much last night. I am just so damned scared about these little boys and so completely overwhelmed by all we have learned about this disease, the treatment and the health of our boys, Cameron and Cole.
We just met with Dr. Ryan, the amazing doctor that will perform this surgery today. He is such an amazing doctor... professional and yet compassionate, serious and yet casual.
There’s a lot of information to absorb but here’s kind of the rundown on what we learned about the babies, me and my placenta and the surgery that we didn’t know yesterday... or that, unfortunately has changed since yesterday.
The baby that they are most concerned about is known as the recipient or poly (some medical term that I can’t remember but is something like polyhydramy –something...it means too much fluid). Because of all this extra fluid (which is up abit more today) his heart is working hard and they can see that he is ‘stressed’ by looking at some readings in his umbilical dopplers... which is a reading of the flow in and out of his body through his umbilical artery I think. The other baby, the donor, is looking fine...no signs of any organ damage. We found out that the recipients umbilical cord is inserted 11 cm from the placenta into the uterine wall but I have no idea what the means or why it is a concern. I also have an anterior placenta which is why it’s been hard for anyone else to feel these little hockey players inside of me...but makes it a bit harder to do the surgery I think.
These little boys are very tiny, even for their age, and Dr. Ryan was honest with us. If they are born now they will not be saved, there is nothing that can be done for them. He told us that without the surgery I’ll have today that we would lose one for sure and likely both. If we don’t have it and we lose one than the other one will be severely brain damaged. But Dr. Ryan seems hopeful and thinks we caught this in time.
Oh Mom, I am so scared for these boys and for me. I can’t stop crying. Geoff has been great but he’s pretty overwhelmed too. Thankfully they are letting him sleep on a cot in my room so at least I am never alone.
Call me when you get this message okay...I need to hear my mommy right now.
Sent from my wireless device on the Rogers Network
Canadian Parents Message Board – March mommies
Well it's me again. I am thinking it is funny that I made jokes a few days ago about avoiding cities like Toronto as often as I can. I am not avoiding Toronto at all today and am grateful the specialist here at Mt. Sinai hospital as I am here due to complications with my twins. They are experiencing twin to twin transfusion syndrome where one twin is receiving all of the nutrients and is suffering because of it...his heart is working very hard and had they not caught this yesterday it could have been fatal. The other baby is doing very well despite having no amniotic fluid around him. He has no signs of any complications to his organs at all. They are both somewhat small for their age and if things go absolutely horribly and they are born in the next two days they won't survive. BUT my body is showing no signs at all of going into labour....cervix is very long...longer than the average woman with a singleton.
I will be having surgery today to correct this problem and as long as all goes well which the dr's are very confident about and if it doesn't cause me to go into labour or cause any other complications then I should likely carry them for another 10 weeks.
I am so scared and so emotional but need to remain positive.
We now know the sex and testosterone will be flowing in our house. We finally find out their sex...I am going to be WAY outnumbered by boys...two little gents in there!!! We have tentatively named them Cameron and Cole.
Does anyone have any great success stories out there for me...I could use some encouragement.
Thank you for your continued prayers, texts, emails and calls. They mean so much to us and are so needed.
I am back from surgery and things went well. I was pretty out of it and didn’t get to see our boys from inside (on the camera on the scope) but Geoff did and says they look handsome. There was even a moment where baby B reached out through a hole in their dividing membrane as if to comfort his sick twin. This hole in the dividing membrane is a further complications which will mean a much more watched pregnancy and a guarantee of delivery in London or here but Dr. Ryan feels confident that he disconnected all the vessels connecting the babies and that TTTS will no longer be an issue for us.
The baby that had too much fluid, the recipient, was looking weaker and is a very sick baby. Dr. Ryan is very concerned about him and will be sending us for a fetal echo cardiogram tomorrow morning. I am so scared for my babies and ask for many prayers for all of us, especially little baby A.
I am off to eat...finally... no food since last night and unfortunately its Swiss Chalet for again...the only thing open that we know of near here.
I’ll update you all tomorrow after the echo. Thanks again.
Jodie and Geoff
35 Mommies of Multiples Message Board
Update for you guys. Everything regarding surgery went very well. All vessels that were causing the transfer have been sealed off so that problem will be fixed. Prior to surgery we learned that our recipient baby moved from stage 3 to stage 4 with there now being fluid in his abdomen as well. This is very surprising to Dr. Ryan as TTTS does not usually progress so rapidly... it is also very concerning as his heart is damaged. Tomorrow I have to have an echo cardio ultrasound on the baby to see what damage is there....hopefully nothing serious.
During the surgery another problem came up...in order to get to all areas in the placenta that were affected they had to make a small hole in the sac separating the babies. Immediately the fluid moved from the one baby to the other...which meant immediate relief for them BUT it also means that they are now not completely separated so I will be VERY heavily monitored and could end up in the hospital to monitor them to ensure their cords don't entangle. It will also mean a definite c-section and most likely an early delivery but not as early as now....at a very viable stage. I am so happy, so much stress has been alleviated.
Other than that I am good. ...tired, a bit crampy and drained!!!
Thanks for all your prayers and thoughts....keep them coming as we aren't out danger yet but it is looking much better!
Dear Cole and Cameron;
Daddy wants me to write to you and tell you how handsome you are and how excited he was to see you inside of me. I wish I was able to see you too but I didn’t have my glasses on and was pretty sedated so it wasn’t really possible.
The surgery seemed to go well. I am very tired and uncomfortable but I feel confident and happy that this problem will be behind us.
Right now I can’t feel you moving because they gave us some meds to keep you calm during surgery. I can hardly wait to feel you kick and punch me again so I know that all is well.
Things must seem different in there now for you both... more room for one and less room for the other. Daddy says that one of you reached over as if to give the other a high five or maybe a hug just at the end of the surgery and that brings me great comfort. I am so glad you have each other, so glad you will always have each other. What an awesome thing it will be to grow up with your best friend right beside you.
I know I’ve told you this over and over but I want you to know how much I love you and how much I want you to be in my life. I know I was pretty nervous at the start and couldn’t imagine my life with two little babies. Now I can’t imagine my life without you both. Thankfully this surgery has eliminated so much of our medical issues and we will hopefully go on to have an uneventful few months.
Time for mommy to go to sleep. I hardly slept last night because I was so scared and worried. Tonight I think I am too exhausted to do much other than sleep.
I love you both so much Cole and Cameron... you are my little miracles!
Hey there! Just heading over to Sick Kids now for the echo cardiogram.
How are things today? How are you feeling?
Things seem good today. I felt some strong kicks from the baby that is sicker this morning and am so glad to know he’s healthy enough to kick his momma.
That’s great. I’ve had you on my mind all morning. Heading to St. Catherine’s now.
Say hi to the whole family for me. Can’t believe I’m missing Christmas...first time EVER.
I think you have more important things to do today.
I guess. Hug and kiss the boys for me and tell them their baby brothers are doing great. Bye.
Will do. Take care. Bye. Love you.
My dearest sweet sons;
I don’t know how to write this, I don’t know how I can express how shattered my heart is. This is the hardest thing I’ve ever had to do, the hardest thing I’ve ever had to write. I don’t want to write it, I just want to turn back time to Thursday morning and start all over again. Tell me I can do that....PLEASE tell me I can do that. I can hardly breathe right now, I can’t see this paper for the tears streaming down my cheeks.
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. Oh my sweet children, I am heartbroken that you won’t get to grow up together, that you will not share that twin bond and will not be the best of friends.
I am heartbroken, I am shattered. I want to scream, to rip things from the walls of this horrible hospital room. I want 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’s wrong, he’s so very wrong. I felt you move, I know I did...he’s got to be wrong.
Oh my dear sweet innocent baby A how I ache to hold you, to tell you how sorry I am that I couldn’t protect you. I have never even met you and I know I will miss you forever. The world will never be the same, I will forever be broken, part of my heart missing.
Oh Cameron and Cole I love you both so much and I am so very sorry, so very sad, so heartbroken and so lost. How will I ever make it out of this, how do I go on?
Just got Geoff’s text. I am so very sorry and so shocked. Will call when my shift is over.
Thanks. I am beside myself, can’t stop shaking, crying or feeling sick.
Oh my dear friend how I hurt for you. I wish I could be there to hold you while you cry.
I love you my friend...and wish you were here too. Mom and Dad will be here soon, thank God.
That’s good. How’s Geoff holding up?
He’s a mess. He keeps leaving the room in tears...going for a smoke he says. I know he just doesn’t want to upset me more but I wish he’d stay
Men are a tough aren’t they. Oh sweetie I wish I could take this all away.
I wish I could send it all away. I want to start this weekend over! Gotta go, just been called to ultrasound to meet with Dr. Ryan. Pray for us and our babies, no idea if the other twin is okay or not.
Will do...will send a prayer circle request out later too. Talk to you tonight after my shift. Love you!
This is, by far, the hardest email that I have ever had to write. I am shattered and heartbroken, lost, confused and devastated. I can’t believe I have to let our close friends know this via email but even more heartwrenching that I even have to write this. Putting it in writing makes it real and I don’t want it to be real, I don’t want it to be anything but the worst nightmare I’ve ever had. This morning, at 11:00 or so, we learned that one of our sweet boys had become an angel. The doctor has explained to us that because the fluid transfused so quickly to baby A, his heart was working very hard. They compared it to a senior who has problems with fluid retention… the heart has to work that much harder to keep up with all the extra fluids. And this morning that became to much for our son and his heart gave out.
We are, as you can imagine, beyond devastated and so very confused . So much for our dreams of matching clothes, matching toys and matching boys.
Right now, though our other baby is looking strong, he is also in a life threatening position as well. He has a very very low blood volume and they are sure that he needs a blood transfusion. It will be done tonight and we can only pray that it will have the desired affect and he will not suffer brain damage.
our doctor continues to amaze us with his compassion but steadfast dedication and we ask that you all pray for success for this procedure. We also need your prayers for us…as we deal with all that the last 48 hours or so has handed to us.
I will keep you posted and let you know how the procedure goes.
Jodie and Geoff
Sent from my wireless device on the Rogers Network