Tuesday, July 04, 2006

Thomas family heart story.

Our Daughter Kaitlyn was born with Tricuspid Atresia. Kevin and I had no ideal what was wrong with her until she was one day old. The Dr found a heart murmur and at first we thought this was normal. She said it could just be the normal murmur that occurs with the valve that is in between the heart and lungs which closes after birth. This happens with all of us. The Dr told us not to worry that she should be fine. The Dr said she would have Kaitlyn’s heart scanned later that day just to make sure. About an hour after that a nurse came in to take her for her for a checkup. What I did not know at the time, was she would never truly come back to my arms again.

An hour or so went by and I started to worry. I asked a nurse to find out were they had taken Kaitlyn. Soon after, I found out that her stomach was bloating up she could not digest her food with what little food she had eaten at all. Somehow I knew something was not right. Even the night after she was born, I had told the nurse that I thought something was wrong with my baby. She was so quiet and did not eat and turning odd colors. I shrugged it off as new mom jitters. When they said that Kaitlyn was bloating up and she would have to stay in the NICU for at lest 48 hours, I knew that something must really be wrong. This was not just my mind running amuck. We found out later that day after the heart scan that she had a heart defect called Tri-cusped Atresia. She was to be flown by helicopter to LA to the Kaiser Hospital there and would have her open heart surgery at Children’s Hospital in LA. This was all too much for me, I started to vomit. It was all hitting me too fast and there was no where for all the emotions to go. I had Kaitlyn by a planned C-section and I was to stay another night before I would be released. But I made the Dr’s let me go with her. I did not want to even be one moment away from her and yet I was not allowed to hold her. The helicopter took longer than we had thought because of bad weather and did not come to get her till the next night. So instead of making the hospital let me go I was refusing to leave, as it would turn out. When they took her by helicopter I remember talking to her calling her my little feisty fighter a name that she kept till the end; telling her that she could do this. She had to! That I loved her and that I was always there no matter what.

It is an odd feeling to see a helicopter take off into the air with your newborn baby. I started to cry as hard as I watched through the window. The nurse tried to reassure me. Saying “she is in great hands” and I told her as calmly as I could “we have a 2 year old little girl that has never been in a car seat that I have not personally put in myself. I am that paranoid over my kids and their safety, yet my 2 day old baby is flying in a helicopter with people I have never met over 100 miles away. How can you say that she is in great hands? You have to understand, that from my point of view they are not MY hands so they are just not good enough” and that was exactly what I was feeling at that moment.

My husband and I drove from Bakersfield to LA that night; I was drugged to the hilt because of the pain from my incision. My in-law, who I have to say I love but have not always gotten along with, came to help us out. Our 2 older daughters, Kara 12 years old (Kara is Kevin’s daughter my step) and Brhyona 2 years old would stay at my mom’s house while we took care of Kaitlyn. The night we first got there, we went to see Kaitlyn in the Kaiser Hospital. The long corridors were hell on me, but I was stubborn and walked the whole thing. When we found the NICU, I saw that Kaitlyn was still ok and hooked us to a lot of IVs and things. In Bakersfield they had her on IVs to make sure that her heart worked properly and a vent to make sure that the meds did not stop her breathing. I felt better knowing where she was. On the way to LA (when I was awake) I was freaking out thinking, where is she? who is she with? and are they being good to my baby? But her nurse was such a sweetheart that it did make it a little easier going to find a hotel room and trying to get some sleep. It was already past midnight when we left for the hotel.

The next morning we met with the Dr at Kaiser, he told us what was wrong with Kaitlyn, explained it in detail. Something that we until then, really had not understood. He told us what the surgery would entail. For her 1st surgery they would put a permanent shunt between her heart and her lungs to keep that valve open that normally closes after birth. This would help her blood to circulate. Then for her 2nd surgery, around 8 months old, they would connect the blood that normally comes from your legs and into the right side of your heart and drain that right into her lungs. Then there would be a 3rd and hopefully final surgery, when she was 2 or 3 years old. They would take the blood that comes from the head and upper body and have that go into her lungs also. When all 3 were done the idea was that all her blood would go right into her lungs and then her heart would only have to pump it out into her body using the left side of her heart. They gave her a 98% chance that she would make it through the 1st surgery and an 80% chance to make it to age 5. That was great odds for us. I had been so worried that the Dr would say there was no hope. But there was and I started to breath just a little easier.

The next day they moved Kaitlyn to Children’s Hospital in LA. They were preparing her for her surgery and we got to meet the surgeons that would operate. The best part of this was that I got to hold my baby again. She was 4 ½ days old and I got to hold her that night for about 3 hours. We could have stayed all night long but my C-sec incision would not let me. I was in pain and the only thing the hospital had for me to sit on was a folding chair. So I left her in the care of a nurse knowing that the next morning she was to have open-heart surgery.

The next morning we got a call at about 6 am, but we were ready, we wanted to get through this. We went to the hospital and the Dr’s went over the operation one more time. As we watched them wheel Kaitlyn away I started to cry. The thought ran through my mind what if I never get to see her alive again. She had been doing so well. They had taken her off a lot of the normal med’s that heart babies have to have. The Dr reassured us saying how well she has done so far. During the 2 hours that it took for the operation, I kept telling myself that she is ok When it was over, the head Dr came in and told us how well Kaitlyn was doing and she had gone through the operation well. They were able to close up her chest even. That was something that we were worried about because often the surgeons have to leave a child’s chest open because of swelling. But as for the moment she was well and we would be able to see her in an hour after the nurses got her settled in. An hour passed and we went into see her, just as we were to enter the room bells and whistles went off. They rushed us out of the ward and into a room to wait. They said 20 minutes and then we could see her. We did not know if it was Kaitlyn or one of the other babies that was in the room that was having problems. But we thought it was probably Kaitlyn because she was the one that had just been in the O.R. Twenty minutes turned into an hour that turned into 2 hours, finally a Dr came in and told us that Kaitlyn had crashed and the Dr’s words echoed what the nurses had been saying. Her Blood Pressure had dropped very low and they did not know were the blood had gone to. They were hoping it was not in her brain. She told us that it was looking very bad and that the only thing we could do to even give Kaitlyn a chance was to put her back on the E.C.M.O. life support. Her heart was not pumping well and they could not get it going. Maybe the ECMO would give her enough of a break that she could heal enough to come out of this. They were also going to have to do a brain scan because when the Dr’s had opened up her chest after she crashed they had not found any blood. So the fact that she may have a brain bleed was very possible. I begged them to just save her, do anything, I did not care just save her!! They put her on the ECMO and waited for the brain scan.

Kevin and I went to go see our little angel. She was bloated so very badly. You would never have known that this was my daughter who was only 5 days old and at birth only weighed 6lbs 8oz. and the day before surgery she was down to just 6 lbs. because she never got to eat anything. She was so swollen that her tong was out of her mouth. Her hair was standing on end because her skin had stretched to the limit and I could not even find her eye lashes for all the bloating in her eye lids. Her little sweet hands were just puffs of flesh now and I could not really see anything of my Kaitlyn lying before me. Her chest was open tubes running in and out of her body. My brain shut down. How was I going to live without her? How could God let this happen to us? TO KAITLYN? I had grown up in church and always been that good little church girl and now where was God at when my baby was dieing. Kevin took me out of the room, I don’t think either one of us could take it at that point. The brain scan came in and it was bad news. She had bled out into her brain. The Dr’s said they would give it till the morning and do one more scan to make sure, but they did not give us any hope at that point. We left the hospital that night and went back to the Ronald Mc Donald House (that place is a wonderful blessing let me tell you.) and tried to go to sleep.

The next morning we got another call they had done the brain scan and we needed to come back to the hospital. When we got there the Dr’s told us how Kaitlyn’s brain bleed had gotten worse and there was no hope. There was no chance at all and even in the best of best she would be a vegetable the rest of her life. We went to see her one last time. The only thing that I could do was cry and say “I’m so sorry” at the time I had no ideal really why I was saying it, I still don’t. I think I did and still do blame myself for all that happened. I am her mother and I was supposed to save her from pain. Yet I feel like all she ever had was pain. Kevin had to almost carry me out of the room. I was just sobbing “Not my baby”, “ PLEASE Not my Kaitlyn.” We took Kaitlyn off the ECMO on May 5th 2005 our little angel was only 6 days old.

Kaitlyn Peggy~Jo Thomas~Born April 29th 2005

Fell asleep to the angels May 5th 2005

She had never got to come home to the sisters and family that so loved her. What was I going to say to the kids? In all the craziness of the last 2 days my mom had come up for support and left my dad with Kara and Brhyona. He had told Kara what happened but how could we deal with this as a family. How could I live without my baby in my arms. When your child dies, I can’t explain the pain that your body goes through. The mental hurt is just part of it. My arms and body just CALLED OUT for Kaitlyn. They still do!

Kaitlyn was buried next to my grandparents.

In the year since we lost Kaitlyn our lives have been so different. I know that she changed us and I know she watches over us all. I miss her like mad. I still cry myself to sleep. But she is my saving grace in a way. I know what life is now. I know the pain. But I also realize the joy more now too. When our other daughters smile I take it in as though it may be the last time I see it. Yes I know the pain of life better than most. And the hurt never really goes away but at lest I still have Kara and Brhyona they are the reason I breathe. But know that when it is my time to leave the earth I will be running straight for my angel Kaitlyn.

I have met a lot of heart mom friends who have lost over the net, one of them, Karen Prior from England. She is my strength at times. 2 years ago she lost her little boy, Lewis at 2 years 8 months old. Since we lost Kaitlyn, I have doubted alot of things GOD for starters. But the one thing that I do know is that CHD’s must be stopped. There are twice as many heart babies as there are cancer kids. Yet as I was told Cancer is the “hot ticket” people are not as likely to care about heart kids. I don’t understand that at all. We have to change this. We have to spread awareness!! There has to be something that I can do. I have tried to do all I can and I am thinking about starting a charity in Kaitlyn’s name, yet I am having a hard time knowing just want to do. Kaitlyn will always be my angel. But there are so many kids out there that need us, and everyday more heart babies are born.

Here is a web group I have started in memory of our angels

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