This is the update I have been avoiding since my appointment last Thursday when I hit 16 weeks. I was praying the prognosis would get better but it has not. I should be updating you right now on what the genders are or what their names are for that matter but I regret I am unable to do so, not because I don't know but because I want that announcement to be associated with happier times and this is not one of them.
I warn this is a long update but I appreciate those that take the time to read it. Tommy and I need all the support and prayers we can get. It is a difficult situation to explain but I will try my best.
So, in a nutshell our twins A & B are in between stage 1 and 2 of twin to twin transfusion syndrome (TTTS). All 3 babies have normal anatomy and heartbeats, however, Baby B has very little fluid and they cannot find her bladder. This is because it is deflated I guess, not being used as she has little fluid. Baby B is stuck and floating above Baby A but according to the doctor babies don't float. This is another indicator of the problem. We were given 4 options all of which pretty much suck:
1. Do nothing - this risks the lives of all 3. Baby A could get to much fluid and go into heart failure, Baby B would not get enough to grow and would not survive, this could lead to pre term labor in which we would lose C as well.
2. Terminate both A & B babies. This poses little risk and would give Baby C a chance.
3. Terminate baby B only - this gives A & C a chance but is riskier for pre mature rupture of membranes. 80% chance they will survive.
4. Laser surgery to sever the blood vessels connecting A & B. The only option with a chance that all 3 will survive at 10% - yes he said 10%. Also a higher risk for premature labor and losing all three. So its the only chance of saving all three but you also risk losing all three. The chance for premature rupture of membranes is the same as option 3.
I was overall not impressed with the doctor we met with today. If we choose the surgery he sends us to Houston because he does not have enough experience. I felt like he was pulling numbers out of a hat and guessing because we have triplets and not twins. He made the situation and every option seem very bleak and I have heard so many positive stories and out comes the past few days. I feel in my heart we need a second opinion. I know realistically we are facing losing one or all of our babies but I cannot give up based on one doctors prognosis. We have called a doctor in LA and sent them an email. We are prepared to go out there if need be if they think they can help us.
Its hard for me to bare the thought of losing any of our babies but do we risk losing all three? An impossible decision. As the doctor said today "no matter what you do, the outlook is not good". Thanks for the pep talk doc!
So, what do you do when it does not matter what you do? I pray. That is all I can do and ask that you do the same. When you are at the end of your rope, tie a know and hang on. Don't lose hope, especially if its all you have. All these things I repeat to myself throughout the last few very long days as we awaited this appointment. At some point God decided to bless us with three babies and I can't give up on them quite yet. I have been through enough the last couple years to know I am one of the strongest people I know. I have to be. And I married the best man there is. So, somehow, some way we have to keep moving forward for their sake.
I ask for your prayers. I am not sure where the next few days or weeks will take us...Texas, LA are both options. I know there will be points where I will start to lose hope or want to give up. Please God, don't let me.
Wow.. Tommy and Kara,
ReplyDeleteI am really sorry to read this and it was difficult to keep reading on.. The one thing I do know, is that God has a plan for you guys and for your babies. Many times we don't understand why he does what he does, but we have to trust. I will be praying for you guys in the upcoming weeks and months and want you to know if there is anything I can do for you, please let me know. Hugs.. Mary Jo
You will be in my prayers Kara. I would get a second , third and fourth opinion. Jeremy
ReplyDeleteKara and Tommy all our love and prayers are with you and your litte family. Turn all your love and concerns into positive energy and pour into your babies. They know how much you love them! You will find the way, even if the path is difficult you will find the way. Search for other opinions and don't give up, we are here with you on this tough road. Your family who loves you dearly!
ReplyDeleteYou are in my thought and prayers. I would go for the surgery but it's a very hard decision. We did our in Seattle and I can give you his info if you like. I also know you talked to Megan and jermey I believe they had there's done a few weeks ago. I pray all your answers come to you and the babies are okay. I was in the same situation but the day before surgery my 3rd baby also started it. Keep is updated
ReplyDeleteand I have faith God will put it all in place
Jami B
Oh I am so sorry to hear this :( Our thoughts and prayers are with you. If you need to chat or anything else at all, please let me know. Get those second opinions & keep the hope.
ReplyDeletep.s. Donnas cousin had twins with ttts, she saw a doctor in tampa that saved them. I can get their info if you would like.
Tommy and Kara...
ReplyDeleteYou are in my prayers. I encourage second opinions. If you choose to come to Houston, then please let me know and i will come be there with you as support. We love you and will be praying for the best.
Your Cousin Stephen