Wednesday, May 28, 2008

Twin-Twin Transfusion Syndrome

These last couple of days have sort of been a whirlwind and after talking to thirty different people on the phone in one day, I decided I need to have a central place to keep friends and family updated on our boys.

By the way....we're having BOYS!!!

Some of the best words I have ever heard (after I got past the shock) was the news that there were two babies. I felt blessed to have one and twice as blessed to have two! Fast forward 6 weeks to yesterday and the scariest words I have now heard are that my babies might have a rare and serious disease.

Sparing too many details, I went to the doctor yesterday a little worried that something was wrong. What I was worried about turned out to be nothing, but from the ultrasound, my doctor could tell that one baby was growing quite a bit more than the other and had a significant amount more fluid in his sac than the other. Twin to Twin Transfusion Syndrome (TTTS) has been mentioned from the beginning as something that they would be watching for and these things were the first indicators that it might be developing. I was scheduled to see a specialist in Houston this morning and after the long emotional appointment, this is what we now know:

*I have the very best team of doctors in the nation. This alone gives me confidence in the road ahead.

* I do not have TTTS....yet. My doctor feels fairly certain that it will develop at some point in time, but I do not yet fit the criteria for it. The time frame is very uncertain. I could go weeks, months, or it could develop overnight. It was mentioned that he has seen this problem "fix" itself, but he didn't really entertain that as a realistic possibility.

* Once it develops, I will have a procedure where they cauterize the blood vessels that are being shared by the babies so that each baby is independent of each other. After the surgery, there is a 50 - 60% chance that I can take home two healthy babies and that is everyone's goal.

*For more information about this disease, visit this website.

*Most importantly...I know that we need prayers. Please pray that our babies will come home healthy when this is all over. Please pray for wisdom as we make decisions in the coming weeks. Please pray for me and Dustin as we will be separated throughout most of this as we have just moved to Snyder where Dustin is working, but I need to stay close to Houston to be closely monitored.

You can tell me all the statistics in the world about this disease, but none of them matter too much because God is in control and taking care of us.

I go back Monday afternoon and I will try to keep updates posted on here.

Thank you for your prayers,

Amy, Dustin & the boys :)

9 comments:

Kendra said...

Oh Amy, definitely praying. So scary what you are going through and I hate that you and Dustin have to be apart through all of this. Do keep us updated and we will keep you in our prayers!

Love, Kendra

The Boyd Gang said...

Congratulations on BOYS!!!! We are in need of some boys around here. We are praying for you all and know that God has big plans for all of you. Let us know if we can do anything.

The Boyd Gang said...
This comment has been removed by the author.
Anonymous said...

Amy,

A friend of mine that I go to church with sent me a link to your blog when she read that your boys have TTTS. I am a mom to 3 boys. Two of which are identical twins who just turned 4 on Tuesday. They too had TTTS. Your story sounds so close to mine. My doctors told me early on in the pregnancy that they suspected TTTS. I was having ultrasounds every 2 weeks to check their progress. My high risk doctor told me the two leading places (at least they were 4 years ago) for the surgery was in Minnessota and Tampa. The doctor who pioneered the surgery is in Minnessota. I e-mailed him a few times. He is a VERY nice man who took the time to e-mail me back even though I was not his patient. Anyways, my doctor told me to have my bags packed and figure out where I want to have the surgery because once he sees that the boys need the surgery I need to get on the next plane and GO! I am very happy to say it never got to that point. At 27 weeks I went into the hospital as a permanent resident until the boys were born. I was hooked up to monitors 24 hours a day till I was 31 weeks and 5 days when the "donor" baby A had lost so much blood that his heart was stopping for long periods of time. They took the babies via C-section. After they were out they did GREAT! They were in the NICU for 4 weeks till they got to come home. We are very blessed that we had such a happy ending. We will be praying for your happy ending too.

-Michelle Boyd
Nashville, TN

I am not on the whole Plaxo thing that everyone else I know seems to be on :-) But if you would like to e-mail me here is my info:

mguyto@yahoo.com

Parker Life said...

We are all praying for you, and these precious little guys, and Dustin because it wont be easy since you are apart.
We love you,
Bryan Amber and the kids

Joey said...

Amy, I am so excited for you and "the boys". And yet I'm sure that this must be a very stressful time dealing with the possibility of TTTS. My best wishes are with you!

Jinja said...

Amy, I am keeping you and your family and those two little boys in my thoughts!

~LoveJen

TheBlogInMyEye said...

Hi Amy,

Your mother directed me to your blog site. My prayers are, and will be with you, Dustin, and your unborn boys. You most likely already know all that I have written below, but as CS Lewis once wrote, “It’s not the learning that we need; most times it’s the reminding that is most important.”

So as you go through the days and weeks to come I would encourage you to spend time simply knowing that God is good. He is a lavish God who gives only the best gifts. It is through those gifts that He draws us closer to Him; not to just know of Him, but to truly and deeply know Him.

Someone once told me, "God's trials are a blessing – make sure you don't waste them." As one who has spent more than my share of time kicking and screaming though God's blessings, I can tell you for certain that this is truth -- but it is truth that we must have our eyes open to see.

He tells us through His apostle that we are to consider it all joy when we encounter various trials. The great thing about this very great encouragement is that we can know for certain that there is great blessing in great trial. James goes on to assure us that it is precisely during our most difficult trials that our Creator has us out on His workbench and is actively working to perfect us. His tools are not always friendly; but He will never forsake us. He will faithfully take us through the horrors that mold and shape us, and in the process He will continue to perfect us for that greatest of all gifts – eternal life with Him and the witness of His glory.

Everything about our faith comes down to believing that God is in control, regardless – even precisely because -- of how things may look. The thing that still makes the faith of Abraham so remarkable is that God – who cannot lie -- had told him that it was through Issac He would make him into a nation, yet God seemingly contradicted that when He asked Abraham to sacrifice Issac back to Him.

Unlike the Pharisees who knew of two conflicting prophecies about the Messiah, yet chose to believe only one; unlike so many of us today who need to be able to see and explain everything we don't understand; unlike those who feel they need to explain an infinite God in finite terms – God who defies explanation, Abraham simply and humbly accepted that God knew more than he himself could comprehend. He simply believed God. That is what God is doing in your life now. He is asking for you to believe, though you do not understand. This is the hardest thing – and yet the most rewarding thing a Christian can ever do.

In the beautiful prose of Psalm 139, King David tells us for certain that God already personally knows your two boys. Unlike you, they have no choices. They cannot worry. They cannot believe. They cannot pray, or praise their Creator.

As you struggle through the uncertainty ahead, rest assured that God is not wringing His hands about this. Rest assured that however this turns out, He is already there. Rest assured that He will most certainly take care of your boys -- His boys -- in His own time and in His own way, but rest assured that this – this right now -- is much more about His sincere and loving desire to know both you and Dustin better. As the prophet Hosea says,

He has torn, but He will heal us;
He has stricken, but He will bind us up. That we may live in His sight.

So take this time to seek Him. Cry out to Him. Climb up into His lap and pour your heart out to Him. Be still in His presence and know Him. Just make certain that when this left turn in your life finds the solution that He already knows -- that you have come to know the one true living God; the God who wants so very much for you to reach out to Him. Make sure you have come to know Him better and more deeply in this time that He is calling out to you.

May the one true living God richly bless you and Dustin, and your as yet unborn boys. May He bless you and keep you in all the days ahead.

Scott

Kendra said...

Amy, any new news on things we can be praying for? Just thinking of you today!

Kendra

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