Monday, February 28, 2011

Guest Blogger-Dennel's Twin to Twin Transfusion Story

As most of you know, the reason Elijah and his brothers were born early is a disease called Twin to Twin Transfusion Syndrome, here is some information on TTTS that I got from the TTTS foundation web page, a great resource!

Twin to twin transfusion syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

TTTS affects identical twins (or higher multiple gestation's), who share a common monochorionic placenta.

The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.

The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.

The events in pregnancy that lead to TTTS - the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.

To raise awareness of TTTS I will be having guest blogger's who have been affected by this disease! Please visit the TTTS Foundation web page, this is very important if you or someone you know are pregnant with multiples. Find out if you are at risk. As you will see, the disease is often progresses quickly, and their are things that can be done to increase your children's chances of survival. If you are pregnant with multiples ask your doctor about your risks, if your babies share a placenta, demand weekly ultrasounds.

Please visit the Twin to Twin Transfusion Foundation for information, help, and advice.


Here is Dennel's story:

*Please realize that some of the pictures included in the TTTS stories will be pictures of extremely premature and/or ill babies, some of the pictures will be babies after they have passed away, for some of us these are the only pictures we have of our children. Please be kind and if it bothers you, you don't have to look! This is the reality we live with every day, this is one of the outcomes of Twin to Twin Transfusion Syndrome. Thank You Dennel for sharing!

In May of 2006, we decided to try to get pregnant. 3 weeks later, I found out I was pregnant. So there wasn't a lot of trying there! My due date was February 6, 2007. I was sick. So sick. But I always believed that whatever pain, bring it on, it's worth it to have a baby.

Around 3 months I felt a little bigger than normal. I felt baby move at 12 weeks. I suspected twins, but I though the uterus grows faster second time around. I already had a 2 1/2 year old girl. But because it's fun, after my 3 month checkup, I got a paper on houses for sale and waited for my husband to get home. I told him we needed a bigger house because we were having twins. He didn't believe me. Later that night I admitted my bluff. I was getting bigger and bigger, but I didn't worry as my ultrasound was coming up. I thought I had a 30% chance it was twins based on my suspicions.

My ultrasound was on Sept 15, 2006. I went with my husband and daughter. When the ultrasound technician looked at the screen she said, right away, so you know there's two babies in here, right? All my TTTS mommies know that wobbly feeling and that big goofy grin. I was excited. Terrified. I wanted to know what they were. I watched them on the screen and I saw a penis and said, oh, it's a boy. And by that time, she had already told us they were identical. I never thought that that would be the last time I saw my babies move.

She worked on my belly a long time, and told us she wasn't sure if one amniotic sac was big and one was little or if they were sharing one. So I was a bit in shock. Shaking. I was 19weeks and 2 days and she said they were 9 oz each and was measuring 18w4d and 19w. The heartbeats were 163.

Twins are such special people. I've always been amazed by twins. The radiologist came in after looking at pics and said everything was fine. He said that I would have to go to my doctor to be referred to a specialist. I asked, "right now?" He said no, just at your next check up. But smart me, I booked the check up for a few days later. I called everyone I knew to tell them we were having identical twin boys. My husband always wanted a boy and he had such a permanent smile on his face. If he was scared at all, he didn't let on.

I was on diclectin to help with nausea, but if I ate breakfast, I guarantee you I puked my guts out. I slept with water bottles around me because I was in such pain. I told my doctor and she said, that's just because you have two big healthy babies in there. So I sucked it up. I couldn't walk from one side of the store to the other without a rest. I wondered how I'd make it through the other half of pregnancy.

September 23: I went to work one week after my ultrasound. ( I work part time) I couldn't do it. My belly just hurt so much. Constantly. So I called my boss and she said, "Go, take care of yourself. Don't worry about work." So I called the doctors office. They said if I was in that much pain, go to the hospital. Reluctantly, I did. They did the blood work and urine work and did the heartbeats. Everything was fine. They asked what my pain tolerance was like. They made me feel like I was just a hypochondriac. But I didn't feel OK. I didn't.
They suggested Tylenol. I told them I didn't believe in medication while I am pregnant. She said it's completely safe. I told her they said the same thing about thalidomide. As long as the babies were OK, I'd suffer through.

Sept 26: So, I had taken the weekend off and went to the doctor on Monday for a magic note to get out of working. Just touching my belly had me in sobs. She said I shouldn't be in that much pain and that I needed to go back to the hospital. She was going to order an ultrasound this time. She said she'd call the hospital and tell them I was on my way.

I went. My mom and daughter were there with me. The doctor I talked to was a twin, so I felt more at ease with him. I picked his brain about what life with twins was going to be like. Believe it or not, the biggest worry I had on my mind was switching the babies. Should I circumcise one and not the other or get a tattoo on one?

Stupid thing was as soon as I found out I was having twins, I went to the library and got every book I could find. There were a couple paragraphs (more like sentences) about TTTS. They said there are no symptoms, and that prevention is regular checkups. So thank you to those who are writing books and getting the word out. I didn't have the Internet then, or I might have been able to find out more. But I probably would have been passive about it anyway.

So they measured my belly and I grew 8 weeks worth in 1 week. I was now measuring 42 weeks and I was 20w3d. So I was pretty sure I would bust before they came out. They came back with some serious faces. We think we know what's wrong with you. You have TTTS. He explained it. Without the surgery, they would most likely both die. He explained the options and the laser surgery. He said, the bad thing is only a few places in the world offer this surgery. Good news is Toronto is one of them and we have a chopper waiting to take you right now. We just need to do an ultrasound to confirm it. Just before the ultrasound, my husband got there. They let him stay, but after a minute looking at the screen, they kicked out my mom and little girl.

I met the OBGYN that was supposed to take over my case. I had an appointment booked with her for 3 weeks from now. Her face was serious and she was quiet. I was pretty sure this meant that a baby died. She told me to brace myself. I told her one died, didn't he? She said, no, they both did.

Either you know how I felt at that moment or you can imagine how that felt. 4 years later I sit here crying as I type it. So the next day, on Sept 27, 2006 I delivered two amazing little babies. They had little fingernails, little toes, little penises, little eye lids. They were perfect. Except that they were dead. I didn't hold them. I laid beside them. I touched them. I didn't talk to them, I talked about them. But we can't control how we react when such horrible things happen to us. I wish I would have kissed them and held them. I purposely didn't take a camera with me because this isn't a joyous occasion. This is the worst moment of my life. I didn't feel the need to have a permanent reminder. But the hospital took pictures anyway and I'm so so glad they did. I look at them often.

Tyler was 10 1/2 inches long and 420 grams. Jayden was 10 inches and 220 grams. I was 20w4d.

Since then, my OBGYN wrote up the radiologist. She said he should have seen a problem with the results and gotten me immediate attention.

Since then, I've fallen in love with 2 more babies. Beautiful, healthy, alive.

I will never have a son. I will never see what a little version of my husband would be like. I won't get to see what having twins would have been like. I don't get to worry about mixing them up.

And I will never be the same. Some days I throw myself a pity party and think about what life would be like right now. Right now, they would be 4 years old. They likely would be fighting as much as playing with each other. Getting them ready for preschool would have been a challenge. They would have long eyelashes and a bum chin like their daddy. They would have figured out by now that they can fool people by pretending to be each other. They would be inseparable. And I would have loved to have them in my life. I probably would have complained about how hard it was to raise twins, but been so lucky to have done so. I would have watched a magical connection between brothers. Right now, daddy would have them in the garage building stuff.

But I firmly believe that we all have stuff in our lives to deal with. We all have a cross to bear. My life rocks. I have a great family and friends. I live in the best Country. (except during winter) I have 3 beautiful mini Me's. If I had had Jayden and Tyler, I wouldn't have had Nelly and might not have had Alexis.

But still, some days just suck.

Dennel's sweet babies Tyler and Jayden:

Monday, February 21, 2011

Elijah Update...

Hi everyone, it has been a while. Elijah was recently sent for a MRI of his head since he hasn't had one since he was born. The doctor called me today with the results. The good news is that that most everything looks the same as it did with his last MRI. There are some concerns that he may have a some excess fluid, just a small amount though, but something his doctor wants evaluated further. We are now going to be sent to either Duke or Wake Forrest, depending on who can get us in the fastest. I am so worried about this, Elijah has been through so much.

I'm just upset, and yes I'm angry. I'm not angry at God, I am just angry about the way of this world. I am angry that my child has suffered so much, I'm angry that there is such a thing as Twin to Twin Transfusion Syndrome, that I lost two children to it, and that TTTS is the reason Elijah still has problems. I'm angry because my life is so stressful. I get angry when I see people going about their lives with their healthy children and I hear them complain about the silliest things. I don't want to be this way, I understand that I used to be just like those people. Once, not so long ago my biggest worry was whether or not I would get a A in one of my classes, or whether or not my child would be a football star or a genius.

Now before you get mad I am not saying that you or anyone else for that matter doesn't have a right to worry yourselves with things like this. I am saying just be thankful if that is all you have to worry about. Give God the thanks he deserves for all of the blessings you have. In spite of it all I will still Thank God for my blessings, because I do have blessings.

I am thankful, because I know that even though things seem bad, they could always be worse. I know God has a plan for Elijah's life, I know that Elijah is a miracle and that he will be used to glorify God, he is living proof of the fact that YES, God does still perform miracles.

When Elijah was born he was pretty much as close to death as anyone can get. He couldn't breathe on his own, he was brought through life threatening illnesses and surgeries, even when man had given up hope, God brought Elijah through. I will never stop praising God for all he has done for Elijah, and I trust him to bring us through this valley and to the top of the mountain once again!

Elijah several months ago at a birthday party....

Monday, February 14, 2011

My prayer...

Please bless my children, keep them safe,
give them health and happiness.
Give the other children understanding,
and give them a few true friends.
Give their teachers wisdom,
and let them be kind.
Heal them lord,
but if that is not in your will;
Give me the strength and patience I need,
Let me be their advocate.
Help me to stand up to those who think they know more about my children,
when they really don't have a clue.
Most of all dear Lord,
let them realize how special they are.
Special not because of their disabilities,
but because you created them,
with a purpose.
Let them realize their gifts,
but most of all;
Give them happiness!