June 22, 2006
As you may have heard, we have been blessed with two little boys! Our little baby is Ben (Benedict William) and our big baby is Jake (Jake Francis.) Sadly, they have TTTS (Twin to Twin Transfusion Syndrome.) Thursday June 15th was the worse day of my life. Our ob told us that neither twin would survive with this syndrome. Kevin and I could barely drive home we were so upset. We came home to my in-laws house and just cried our eyes out for hours mourning our little boys. We then decided to pull it together and stop mourning babies that had not yet passed away. We thought there has to be something that can be done. This is when our intense research begun.
For the last two weeks we have been reading medical journals, looking on-line, and talking with doctors all over the country about different treatment options. What we have come to find out is that our boys do have a chance at survival. Our ob knew little to nothing about this syndrome. She did not even know about treatment options for TTTS.
We found this wonderful website/organization that we feel has changed our entire outlook on the syndrome. Its called TTTSfoundation.org. It gives us so much hope for our little ones. We are not giving up on them and continue to think positive. As I have said before, God will only give us what we can handle. I know I was meant to be pregnant with these babies and bond with them. We just want to do everything in our power to save them. Our entire life right now is dedicated to these babies. As you may have heard, I am on bed rest and a high protein diet. It is going to be a very long road but I am ready for it.
Our doctor is sending us to Cincinnati Monday to see a specialist there to get some extensive tests done. We will be there most of the week. I think we will know a lot more after next week. The good news is after our appointment last Monday both babies grew an ounce and their fluid levels improved. I really think it is directly related to the bed rest and diet. They really are so sweet. They sure are active little ones..I think we are going to have our hands full! :)
June 29, 2006
We got home last night from Cincinnati’s Children’s Hospital where we saw Dr. Crombleholme and his staff. His staff sees 3-5 cases of TTTS a week compared to Beaumont who sees 3-5 a year. So after two long days of testing (a 2 hour MRI-that was fun, an eco., ultrasounds, etc.) we now have a better understanding of where we stand. I would love to tell you that we came home with good news, but sadly TTTS was confirmed in addition to IUGR (Intra Uterine Growth Restriction) also known as uneven placental share. What that means is that Ben is not getting his share of the placenta. Jake may be getting up to 70% and Ben only 30%. We will not know exactly how much each twin is getting until they are born. The uneven placental share does complicate the TTTS. However, a lot of TTTS cases also struggle with this same issue, they seem to go hand in hand.
The good news we got is that structurally these boys are fine. This is a problem with their environment (the placenta,) not them. They have no birth defects that can be detected and their brain and heart scans came back good. However, they are showing early signs of TTTS and IUGR. These two complications are very unpredictable and can cause problems, as we know. The doctor told us this will progress for the worse. However, with monitoring and treatment, both or one baby has about an 85% chance of survival. We were happy to hear this..seeing as how two weeks ago we were told they didn’t have a chance at all. We just have to hope they can both hang on as long as possible and continue to grow. That is why I am on the bed rest and boost. We want to optimize their chances by giving them everything they need to grow and develop as quickly as possible. It is a guarantee that we will deliver early and these babies will be pre-mature. So now it is a race to the finish line.
While sitting in the team meeting with doctors, nurses, and counselors, listening to this information, I felt so overwhelmed. Kevin and I just stayed very strong and took in all the information we possibly could. It was so hard to maintain my composure and not break down and cry. Sometimes I just can’t believe this is happening to us. I know everything happens for a reason..I just haven’t figured this one out yet. I know God has a plan for our family and he will guide us through this difficult time. We remain very hopeful and positive. We know we are doing everything in our power to save our little ones. We believe there will be a positive outcome but also know it’s going to be a long and stressful journey.
TTTS and IUGR are both very unpredictable. Each week we get through is another huge milestone. We will be seeing doctors several times a week and continuing with bed rest and boost. Kevin, Bill, and Beth have been taking very good care of me. I am continually amazed at my wonderful husband. He is so supportive and dedicated. His determination inspires me.
I also want to say thank you to our family and friends. Your kind emails, cards, and phone calls are really encouraging. I hope this blog will keep you posted throughout our journey.
Please continue to keep Ben & Jake in your prayers.
XOXOXO Danielle & Kevin