I just wanted to make everyone aware of a Race for Hope coming up in Monrovia on March 30th. It supports Twin to Twin Transfusion Syndrome (TTTS). It is not very common, but our babies had it. It is where identical twins are sharing a placenta and they are also sharing blood vessels. One baby takes all the blood and nutrients and the other one gets hardly any. The baby receiving all the blood produces lots of amniotic fluid and the other baby can't produce fluid. Both babys' organs could begin shutting down, from their hearts and bladders to their kidneys.
Here is our story:
We found out we were having twins when I was 16 weeks pregnant. The week before they told me there was only one baby. Um I think they may have been wrong about that :). One of the babies had a ton of fluid and the other was quickly becoming shrink- wrapped in his amniotic sac due to a lack of fluid. We had a few options on how to correct the problem. 1. Do nothing and see if it corrects itself 2. Choose the healthier baby and cauterize the other baby's umbilical cord to ensure that at least one baby would survive 3. Have a surgery to cauterize the blood vessels connecting the two babies. If we chose to do nothing and the problem got worse we would probably lose both babies, they were using each other to survive. If one died the blood would stop flowing back to the other baby. Option 2 was not an option because even though being parent's of twins was scary we wanted both of them. So our only option, the only option with hope, was option 3.
Even with the surgery there was such a small chance that both babies would make it, especially the smaller one. I was put on bed rest immediately. At my appointment at 18 weeks the babies had not improved so two days later we were in Hollywood for a consultation to see if we met the criteria for the surgery. The following day I was in surgery, I was scared to death! They only had to cut a 3mm incision and they put a fetoscope, and a laser in the tiny hole. While they were in there they took out 2 liters of extra fluid from the bigger babys' sac.
The next day they did an ultrasound to see if one or both babies were still alive. It was the longest minute of my life while the doctor was looking for their heartbeats. I was crying when Dr. Chmait told us they were both okay. The next two days we had had ultrasounds to check on them. They were fine.
I spent 3 more weeks on bed rest at home, then when I went in for an appointment I was checked into the hospital. I was dilating, I had been ever since the surgery and they put in a cerclage to close my cervix but it just wasn't helping. So I stayed in the hospital for six weeks, while I was in there people from our church I did not even know were at my house watching my children and bringing dinner. It was amazing! Family and friends were also helping. We would not have made it through without all the help. During this time my husband got a staph infection on his leg. He was not allowed to come visit me for a week. It was horrible, a week or so after his leg got better they did and ultrasound ad it showed that the smaller baby was just not catching up in size. I was devastated. I felt like I was in the hospital for no reason, I wasn't even helping the smaller baby catch up in growth. All I was doing was missing my husband and my daughter in her 11th month of life. I also missed walking my son in to school on his first day of kindergarten. I had given up, I needed my husband to just come and be near me and pray with me. I had the ultrasound on Monday and that whole day and Tuesday I just cried. Wednesday I was feeling a bit better except I had gastroenteritis and my stomach was hurting. That night I started having contractions and I had to get shots of turbutaline to make them stop. Thursday morning I woke up at about 6:30 and got up to use the restroom. When I got back in bed to go back to sleep I started really having painfulcontractions. I called the nurse to let her know I was contracting and she came in to put a monitor on me to see how frequent they were coming. When she was gone to get a shot to try to stop them my water broke. She reached down to check me and I was 9cm. I called my husband to hurry up and make it to the hospital. He was 30 minutes away and I was already being wheeled down the hall to have a c-section. He met his mom on the way and handed our daughter over to her. He walked in the door just as they were making the first cut. I was only 28 weeks pregnant, I knew my babies were going to be tiny. I wasn't worried, I knew the Lord was taking them out of me because I had already done all I could for them. Now, them being out was going to be better for everyone. The bigger one came out first at 8:10 am He let out a little cry and then they immediately intubated him so he could breathe. The smaller one came out at 8:11 am and he did not get a chance to cry because they intubated him so quickly. They weighed 2lbs. 7oz. and 1lb. 7oz. They were so very tiny. They put them in incubators and wheeled them into the NICU to begin their very long stays of 83 days and 105 days. They had blood transfusions and platelette transfusions and infections and mean nurses who told me not to touch the smaller baby. While they were in there the doctors did an ultrasound of the smaller babys' head and found that more that half of his right parietal lobe was missing. We later found out that for him that means mild cerebral palsy.
The reason I am writing all of this is because of this race for hope. I was just contacted the other day by the doctors office who did the surgery at 19 weeks gestation and they are having a reunion with the doctor and all his patients. I have not really thought about any of this for while because I am so consumed with other things like diapers and runny noses. But after the phone call I started to remember that this doctor, Dr. Chmait, saved my babies lives. It is because of him and the research that he is doing that my miracle babies are even here. I can't even imagine what life would be like without them. We are so excited to thank the man (again) that saved their lives and we are so excited to be a part of the race for hope to raise awareness of this syndrome.
I have a few side notes that are interesting:
- The surgery I had was experimental and still is.
- The insurance company was not going to pay for the surgery because it is experimental.
- The smaller baby's umbilical cord was not implanted into the placenta it was next to the placenta and blood vessels were connecting it so he could receive blood.
- He was only receiving about 10% of the amount of blood he was supposed to be receiving.
- The hospital I stayed in in Hollywood was Hollywood Presbyterian, the nurses were talking about blessings and praying for us. That was out of the ordinary for a hospital.
- Everyone we met through our journey we know was placed there from the Lord.
- My doctor out here was devastated when he found out the smaller baby had brain damage. He had wished taht he had noticed it when I was still pregnant. I feel it was a gift from the Lord. They may have thought he was hopeless and talked us into terminating his life.
- From a medical standpoint our little munchkin is not perfect and has a damaged brain, but from the Lord's standpoint he is perfectly made. The Lord made my sweet Angel EXACTLY the way he wanted him, he has a plan for him.
- The smaller babys' first and middle names mean gift from God, who is like God.
Here is a link for the race for hope:
tttsraceforhope.org
Another site with information about TTTS:
http://www.americanpregnancy.org/multiples/ttts.htm
First time at bat!
He's the one facing the camera, next to the coach
His First Rose!!!
The walkway before he planted the Calla Lilies