Friday, January 1, 2010

Our little boys

As most of you know, Brandon and I are expecting identical twin boys. Up until Dec. 3 we had no clue that they were even identical or had any problems. We thought that they were fraternal all along. I was 21 weeks along at the time. We were told our little boys had a rare syndrome called twin twin transfusion syndrome. We were in total shock as they discussed survival rates and "options" with us. We were thrown right into thinking that we were going to lose one if not both babies. Our options were 1. to do nothing and watch 2. selective termination 3. laser surgery to separate the blood vessel connections that the boys shared. With this surgery come risks of losing one or both of the babies. We had a hard time processing all of this information because at the time we were just in shock. We had no idea things were this serious.

On Dec. 8th we got a call from a surgeon in Miami, FL telling us they wanted us in Florida that Thursday for a consult on the surgery. If we were candidates for the surgery, it would be done that Friday. This was all happening way too fast for me and Brandon! We did not want to jump into a surgery where we could lose our babies. I had done my research online, and found a website that had a lot of information on TTTS. I got in touch with the founder of the website and also got in touch another surgeon who has lots of experience dealing with this syndrome. His name is Dr. De Lia. He was the first to pioneer the surgery back in the 80's. To make a long story short I called him and we declined the surgery due to the information he had given me during our phone call.

At our next appointment our doctors told us it was probably a good thing we didn't jump into surgery! A week ago all they knew to do was throw us into surgery! Everything had pretty much stablized for the time being. Since then fluid levels have pretty much stayed the same over a 3 week period. This is good news!

They are now worried that the little baby has something called Selective Intrauterine Growth Restriction. They don't think he has a lot of placenta share. This means he gets less nutrients and blood to help him grow. This can cause him to stop growing at anytime. He also has a 2 cord nutrient vessel instead of the 3 he is supposed to have. At our last growth check he had grown 4 ounces. At this point they say any growth is good! He also had absent end flow of his umbilical cord at our last appointment. This is not good, but the blood flow can stay like this for weeks and sometimes it can return to normal. It just means we may have to be monitored even more than we are now!

I am now 25 weeks along. Our next appointment is Monday Jan. 4th. We are also checking growth at this appointment. This is going be a big appointment for us. If the little baby's blood flow is not better and he is not showing signs of growth, they are going to discuss "options" with us again. From what I know their options suck! :) We are going to fight for both of our little boys! I have also started doing my research on SIUGR and know that there is hope past 24 weeks for both boys! I have a good feeling though that our little one is growing and will continue to grow! If we can make it to 28 weeks our chances our wonderful! :)

We want to thank all of you for your support and prayers! I has really meant a lot to us! We completely trust in the Lord and know he will get us through this no matter what! I started this blog because it is easier to post here than it is on facebook. I will post again on Monday after our appointment. Once again thanks to all of you! We love you all very much! :)

6 comments:

  1. Someone who follows our blog passed your info over to us.

    Before, I go any further...here is our daughter's blog: www.KayleighAnneFreeman.blogspot.com

    I read your post & must say that I am happy to hear you are going to fight for your boys no matter what. I know all about the doctor's options and yes, they do suck!

    We were given options of termination, but we felt that God was the one who chose for us to have a child and we should let Him choose if this child is to survive or not.

    Luckily, our 28 week child (Kayleigh) who was growing the size of a 22 week old due to severe IUGR beat all the odds and graced our lives as well as millions around the world too.

    We chose for to fight for our little girl too and she was a blessing to so many. She went through 7 major surgeries, one being one of the smallest to ever undergo open heart surgery at 3 pounds.

    She was two weeks shy of coming home after a long 10 month battle of the toughest hurdles when she went to Heaven because of a unfortunate loss of blood flow to her brain in the final basic procedure to insert a feeding tube in her tummy.

    Whether she would have made it or not it irrelevant. You always need to understand that our children are a gift to us and everyone is given a purpose on this earth. Kayleigh's purpose was so evident as she touched so many lives with the blog and on national television. She helped save many other lives in so many different ways and for that we are blessed that God chose us to be her parents for the short amount of time that we were given.

    I am not sure if you are of faith or not, but just know that no matter what happens to your little boy (either good or bad), just know that God has His reasons and they are always good ones. You may not see why now, but one day you will understand.

    I know for a fact that you were given these two lovely boys for a purpose. The hurdles you have jumped have not been tough and unfortunately they will not get any easier.

    Here is some of the best advice that I can give you!!! Stay positive and be strong! Do your research, so that you can ask everything you possibly can about your children's prognosis. You are the voice for those children, so make sure you know everything there is to know to make the best decision for you and for your family. Sadly, there is so much opportunity for regret, so do everything you can to prevent it happening. Go to the BabyCenter.com boards and post your situation, questions, concerns and you will find an outpouring of support. It is a whole new world out there and you don't have to do this alone.

    We remember exactly where you are right now and it is scary, but it is scary because you don't know everything you need to know yet. I promise you that once you reach out and read read read, you will find a new strength and peace.

    Just think how many lives you can and will save when you learn so much to share your experience with others. Your experience is going to be a blessing to so many because you were strong and didn't allow anything to stop you in your tracks from doing the right thing.

    If you need anything, please don't hesitate. Go to our blog and you will find other stories/blogs of TTTS and IUGR. Contact as many people as you can about this.

    Remember this!!! The doctors are to fear the worst because if they were more positive, they would get your hopes up and cause more psychological damage than if you were to prepare yourself for the worse to happen. When your children survive, they will then look like the hero to you and you will refer business to them. Even doctors, who were once titled caregivers, are now considered salesmen because money talks and it is the root of all evil.

    If you need ANYTHING, please don't hesitate to ask. Aimee and I are here for you. You can email me (Adam) at O2FitnessTrainer@yahoo.com or Aimee at: Aimee@TeamFreemanProperties.com

    Wishing you all the very best, Happy New Years and God Bless,

    Adam & Aimee Freeman

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  2. I am praying for you! Keep fighting for those boys!!!! I can not wait to meet them!!!

    Charlotte

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  3. I'm praying for you and the boys! May God continue to be with you as he has been their for you so far. If their is anything I can do let me know. Love Carchemish Kelly Phelps

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  4. I am praying for all of you!! May God continue to be there giving you strength. Brittany, I know how bedrest is; I was on bedrest for three months before Lauren was born. Continue to be strong. Love you!!

    Jenny Thompson

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  5. Brittany, I'm so glad you started this blog for the obvious reasons.

    So proud of you diligently researching and looking for answers your Drs couldn't give you at the onset of the first ultrasound. We see through answered prayers how the Lord lead you to Mary Slaman-Forsythe, founder of www.tttsfoundation.org and Dr. Julian De Lia at the most critical time of hard quick decisions you and Brandon had to make.

    I am still blown away at their quick response to you and the free consults by phone and email. The world of information they gave you and their passion in helping all with TTTS was a GOD thing...and I believe life saving intervention.

    I honestly believe that your case with the twins will not only help the staff at MUSC see the benefit of bed-rest and nutrition but pave the way of better understanding of TTTS for others that will come under their care.

    I want to thank all of you that have posted and all that continue to read and lift our precious Brittany, Brandon and little twins up in prayer.

    Aimee and Adam I appreciate your words of encouragement and of wisdom. I have looked at your little KayleighAnnes story and see how big Gods plan was in her short stay. No doubt she has touched many hearts...as mine... and still does. Glad to see you understand and see Gods plan and His Grace throughout your journey. I can see Our Father bouncing Kayleigh on His knees now telling her how much He loves her and us all. Thanks again.

    Brittany we love you, Brandon and the twins.

    Papa & Mama

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  6. Brittany & Brandon,

    I'm a loooong-time friend of the Price family; Philip & I were in the same class at our boarding school in Africa & Aunt Alice & my oldest brother "dated" in the way that 9th graders do...... Anyway, I figure that makes us semi-family as your dad & is family have always been very dear to me. So, keeping you & those little guys in prayer as I read your blog. I worked as a prenatal ob-gyn RN back in the 90's & appreciate your detail in your reports. Hang in there, take courage knowing that no pregnancy lasts beyond 40 weeks (well, some till 42, but not often) so bedrest will end. God's got those wee ones in His hand as He continues to create them in His image & form their precious bodies.
    Blessings.
    Susan Lochstampfor Smith

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