"To eat is a necessity, but to eat intelligently is an art." - La Rochefoucauld

Thursday, June 29, 2006

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


Carolyn said...

We are sending lots of love and prayers your way..These boys will know how much their parents love them, and cared for them before birth as well as after! Keep only the positive attitude that you have shown thru out your life, find comfort in family and friends and know that we are here for any thing! Love to you ..Beso, Carolyn

Christine said...

You are in our thoughts and prayers.

With your love for one another and neverending determination for knowledge and understanding of all this Ben and Jake will soon realize just how much they are loved. Your whole family is behind you and are here for support always....we love you both.
Christine & Aaron

Kathy said...

Keep up the strong attitude and rest... You are doing the best for your boys and it will pay off. Let me know when you need some company to pass the time. My prayers are with you, your husband, and Ben and Jake.

Beth Troost said...

Thanks for sending me your blog. I'm so sorry you are facing this. It is a good thing that you have such a strength of character and are so resourceful to find the best treatment. I will pray for Ben and Jake to thrive and for continued strength for you and Kevin. Beth

kim said...

I have total faith that my nephews will be here and by next 4th of July crawling around. I cant wait for their arrival. You and Kevin have been amazing and determined. Those boys are very lucky to have such caring parents. You guys have total support from all your friends and family!

Apap78 said...
This comment has been removed by a blog administrator.
Apap78 said...

I am so sorry to hear of the hard time you and Kevin are going through right now. It sounds like you have a lot of love and support around you, which is such a blessing at times like this. I will keep your family in my thoughts and prayers.


Maria said...

I am around to come visit when you need a friend to talk to or someone to help you pass the time!!! Ben and Jake are so lucky to have parents like you and Kev!!!!!!!

Shauna said...

I have faith in you and know that you and your family will pull through this difficult time. I am thinking and praying for you daily.
Much Love,

Excited Gramma!!! said...

I am so proud of you both! I so admire the determination, love, positive attitude and true belief that you both have!!! Jake & Ben are going to have such incredibly caring parents... and I can not wait to be able to share in their lives! I keep all four of you so close to my heart and in my prayers and am there for you in a heartbeat! I love you!!!!
Mom/Future Gramma/ Sue!!!!!!!!