One year ago today...
This is the first of a series of posts titled this way. (For this first one though, it's not technically one year ago today, because on Saturday I won't be able to post, so if you want you can think of the title of this one as "One year ago Saturday".)
Friday July 28, 2006
My appt was at 4pm and Jeremy was off work that day so he met me there. We were both in good moods, we weren't at all worried about this ultrasound. I had been wondering why we were being sent to another dr to have the second look at the baby's heart, but I called my dr's office to ask them about it and they told me that they started sending people to this office about a year ago just so a different set of eyes was looking at the ultrasound. That made sense to me so I didn't think anything else about it. We had heard some weird things about this dr (I won't say who he is but if you know me, you already know who he is anyway) so I didn't really know whether to expect to like him or not. We didn't have to wait long at all and when we went back to the room an ultrasound person started right away. She looked at everything, but focused mostly on the baby's heart. It took about 30 minutes and she said she was done and was going to send in the dr. He came in and introduced himself then sat down and started looking. His ultrasound only took about 3 minutes and then he made this sound, like a snicker kind of. I can't really explain it in type, but I will never forget it. Then he says "Well there is a serious problem with the baby's heart and we need to do an amnio right now so we can get the samples to the lab before they close." Then he walked out of the room.
Jeremy and I just sat there in shock, not really sure of what we had just heard. I stared at the ceiling and started to breath fast and he reached for my hand, then I started to cry. The dr was gone for a minute or two and when he came back in he brought the girl who first did the ultrasound and he was carrying a metal tray. I couldn't see what was on it because I was still laying back. He told me that he was going to do an amniosyntesis (sp) to check for problems with the baby's chromosomes because sometimes when there are heart problems there are other problems too. I heard what he was saying but I wasn't paying attention. I just shook my head. He had me lay flat on my back and he cleaned my belly off with iodine then he picked up the BIGGEST needle I had ever seen. I don't really know how long it actually was but in my mind's eye it was foot long. The girl started looking at the baby by ultrasound and then the dr stuck that needle into me. I was starring at the same spot on the ceiling the whole time and my ears were full of tears as they streamed down my cheeks. That needle hurt so bad and I had to start concentrating on my breathing so I wouldn't pass out. The procedure took about 15 minutes start to finish and after they got all the samples in the correct vials and labeled the dr got back on the ultrasound machine and started showing us what was wrong with the heart. He said the baby had something called Hypoplastic Left Heart Syndrome. He said that meant that the left side of the baby's heart had stopped developing shortly after it was formed and it was way smaller than it should be. He showed us one part of the heart and then showed us another part and said they should be the same size, but the latter part was so much smaller. After we looked at that he sat in front of us and asked what questions we had.
We were both in so much shock it was hard to try to come up with something. One of us asked if there was anything that could be done about the problem. He said "Well you can abort the baby, you can deliver it and let nature take it's course, or you can try to treat it with surgery." We both immediately said we would never abort this or any baby so he told us that the two surgical options were either a heart transplant or a series of three surgeries, one about two hours after the baby was born, one when it is 6-8 months old and one when it's 2-4 years old. Then he went on to say that there is a drug that they will give the baby as soon as it's born that will keep it alive until that first surgery but about 10-15% of these babies don't live that first two hours. He explained that while the baby was inside me it would be fine because my body was supplying the baby's body with oxygen but as soon as it was born the problem would take over. He also said we would not be having this baby in Joplin, but probably in either Kansas City or St Louis. He advised us to check with our insurance companies to see what hospitals were covered. Neither of us could manage to ask very many questions but I did have one more. I said "Can you tell us what it is?" "It's hypoplastic left heart syndrome," he said. "No, I mean is it a boy or a girl," I said. So he picked up the transducer and put it on my belly again and looked for a second and said "it's a boy." "Are you sure?" I asked. He pointed to the screen and said "here is one little leg, and here is the other, and here is his third short little leg right here in the middle." We had agreed, Jeremy reluctantly, not to find out if it was a boy or girl, but after the dr said there was something wrong, I just wanted to know. I wanted to be able to pray for this little baby specifically.
When we got home the first person I called was Missy Sanchez. She goes to our church and is kind of in charge of the prayer chain. The second phone call I made was to my step-dad. My mom had went to AR to see my aunt and I didn't want to call her while she was driving down there because I knew she would be so upset and would want to come home and it would ruin her weekend. So I called to ask him what I should do. He told me not to worry about ruining her weekend, she would want to know. He said he would call her and have her call me. I sat at my kitchen table forever just crying and trying to figure out what to do. My mom called and I explained as best I could what the dr had said. She did want to come home, but somehow I convinced her not to, even though I knew she wouldn't have any fun now. At some point we went to pick up Myles from the babysitter. I made Jeremy go in because I didn't want to talk to anyone. When we got home we told Myles that we had found out that the baby was a boy so he would be getting a baby brother. "But it's a girl," he said. He had been saying that all along. He knew I was upset and I told him that something was wrong with the baby's heart. Of course he didn't really understand.
I was supposed to go to a scrapbooking crop that night with my friend Lacey and even though I was a complete wreck, I decided to go anyway. Jeremy and Myles were going to go to the movies. I have always thought that seemed kind of wrong that we were not together that night, but I think it was for the best. If we had been alone in our house, all we would have done was cry and imagine all sorts of horrible things so I think going out and getting our minds off it for a little while was good. I picked up Lacey and she looked so worried when she came out side. My face was red and swollen and I really hadn't stopped crying since we were at the dr. As we drove I told her what we had found out. We stopped to get food and before we left the parking lot she took my hands and she prayed. That meant so much to me because I couldn't do it. When we got to the crop, it was only me, Lacey, and Leslie. (The crop was at her house. She also goes to my church and she had already found out by the prayer chain.) I was so glad it was just the three of us because I wouldn't have to explain it to a stranger.
We didn't get much scrapbooking done that night. I would start on something, and I'd try to push Hypoplastic Left Heart Syndrome out of my head but it wouldn't go away and I would just start to cry all over again. I remember saying at one point to them that my baby just couldn't have a heart transplant. That is so huge, I said. That thought kept running thru my mind all night. That and wondering if my baby was going to die. I kept thinking that too. I didn't want to at all, but I couldn't help it.
I got home late but Jeremy was still up, looking online about HLHS. Some people think that when you find out bad news the last, worst thing you can do it look it up online, but hindsite has shown us that it was the best thing we could've done. We were not given very accurate info, coupled with hardly any hope at all, so looking online was good for us because we got some facts and found stories about kids living with this defect.
So much has happened since that day, one year ago. Up to that point it was the worst day I had ever had and I've had some bad ones. I'm grateful that I had friends to talk to and cry with and that so many people started praying for our baby immediately that day. I can still remember all of this as if it had just happened yesterday. And it still hurts as bad too. But I'm getting ready to go check on this baby, asleep in his crib and I will cry over him tonight as I did that night and thank God that we are on this journey. For without pain, you cannot appreciate happiness. And tonight I am happy. Talk to you later.
Sarah
Friday July 28, 2006
My appt was at 4pm and Jeremy was off work that day so he met me there. We were both in good moods, we weren't at all worried about this ultrasound. I had been wondering why we were being sent to another dr to have the second look at the baby's heart, but I called my dr's office to ask them about it and they told me that they started sending people to this office about a year ago just so a different set of eyes was looking at the ultrasound. That made sense to me so I didn't think anything else about it. We had heard some weird things about this dr (I won't say who he is but if you know me, you already know who he is anyway) so I didn't really know whether to expect to like him or not. We didn't have to wait long at all and when we went back to the room an ultrasound person started right away. She looked at everything, but focused mostly on the baby's heart. It took about 30 minutes and she said she was done and was going to send in the dr. He came in and introduced himself then sat down and started looking. His ultrasound only took about 3 minutes and then he made this sound, like a snicker kind of. I can't really explain it in type, but I will never forget it. Then he says "Well there is a serious problem with the baby's heart and we need to do an amnio right now so we can get the samples to the lab before they close." Then he walked out of the room.
Jeremy and I just sat there in shock, not really sure of what we had just heard. I stared at the ceiling and started to breath fast and he reached for my hand, then I started to cry. The dr was gone for a minute or two and when he came back in he brought the girl who first did the ultrasound and he was carrying a metal tray. I couldn't see what was on it because I was still laying back. He told me that he was going to do an amniosyntesis (sp) to check for problems with the baby's chromosomes because sometimes when there are heart problems there are other problems too. I heard what he was saying but I wasn't paying attention. I just shook my head. He had me lay flat on my back and he cleaned my belly off with iodine then he picked up the BIGGEST needle I had ever seen. I don't really know how long it actually was but in my mind's eye it was foot long. The girl started looking at the baby by ultrasound and then the dr stuck that needle into me. I was starring at the same spot on the ceiling the whole time and my ears were full of tears as they streamed down my cheeks. That needle hurt so bad and I had to start concentrating on my breathing so I wouldn't pass out. The procedure took about 15 minutes start to finish and after they got all the samples in the correct vials and labeled the dr got back on the ultrasound machine and started showing us what was wrong with the heart. He said the baby had something called Hypoplastic Left Heart Syndrome. He said that meant that the left side of the baby's heart had stopped developing shortly after it was formed and it was way smaller than it should be. He showed us one part of the heart and then showed us another part and said they should be the same size, but the latter part was so much smaller. After we looked at that he sat in front of us and asked what questions we had.
We were both in so much shock it was hard to try to come up with something. One of us asked if there was anything that could be done about the problem. He said "Well you can abort the baby, you can deliver it and let nature take it's course, or you can try to treat it with surgery." We both immediately said we would never abort this or any baby so he told us that the two surgical options were either a heart transplant or a series of three surgeries, one about two hours after the baby was born, one when it is 6-8 months old and one when it's 2-4 years old. Then he went on to say that there is a drug that they will give the baby as soon as it's born that will keep it alive until that first surgery but about 10-15% of these babies don't live that first two hours. He explained that while the baby was inside me it would be fine because my body was supplying the baby's body with oxygen but as soon as it was born the problem would take over. He also said we would not be having this baby in Joplin, but probably in either Kansas City or St Louis. He advised us to check with our insurance companies to see what hospitals were covered. Neither of us could manage to ask very many questions but I did have one more. I said "Can you tell us what it is?" "It's hypoplastic left heart syndrome," he said. "No, I mean is it a boy or a girl," I said. So he picked up the transducer and put it on my belly again and looked for a second and said "it's a boy." "Are you sure?" I asked. He pointed to the screen and said "here is one little leg, and here is the other, and here is his third short little leg right here in the middle." We had agreed, Jeremy reluctantly, not to find out if it was a boy or girl, but after the dr said there was something wrong, I just wanted to know. I wanted to be able to pray for this little baby specifically.
When we got home the first person I called was Missy Sanchez. She goes to our church and is kind of in charge of the prayer chain. The second phone call I made was to my step-dad. My mom had went to AR to see my aunt and I didn't want to call her while she was driving down there because I knew she would be so upset and would want to come home and it would ruin her weekend. So I called to ask him what I should do. He told me not to worry about ruining her weekend, she would want to know. He said he would call her and have her call me. I sat at my kitchen table forever just crying and trying to figure out what to do. My mom called and I explained as best I could what the dr had said. She did want to come home, but somehow I convinced her not to, even though I knew she wouldn't have any fun now. At some point we went to pick up Myles from the babysitter. I made Jeremy go in because I didn't want to talk to anyone. When we got home we told Myles that we had found out that the baby was a boy so he would be getting a baby brother. "But it's a girl," he said. He had been saying that all along. He knew I was upset and I told him that something was wrong with the baby's heart. Of course he didn't really understand.
I was supposed to go to a scrapbooking crop that night with my friend Lacey and even though I was a complete wreck, I decided to go anyway. Jeremy and Myles were going to go to the movies. I have always thought that seemed kind of wrong that we were not together that night, but I think it was for the best. If we had been alone in our house, all we would have done was cry and imagine all sorts of horrible things so I think going out and getting our minds off it for a little while was good. I picked up Lacey and she looked so worried when she came out side. My face was red and swollen and I really hadn't stopped crying since we were at the dr. As we drove I told her what we had found out. We stopped to get food and before we left the parking lot she took my hands and she prayed. That meant so much to me because I couldn't do it. When we got to the crop, it was only me, Lacey, and Leslie. (The crop was at her house. She also goes to my church and she had already found out by the prayer chain.) I was so glad it was just the three of us because I wouldn't have to explain it to a stranger.
We didn't get much scrapbooking done that night. I would start on something, and I'd try to push Hypoplastic Left Heart Syndrome out of my head but it wouldn't go away and I would just start to cry all over again. I remember saying at one point to them that my baby just couldn't have a heart transplant. That is so huge, I said. That thought kept running thru my mind all night. That and wondering if my baby was going to die. I kept thinking that too. I didn't want to at all, but I couldn't help it.
I got home late but Jeremy was still up, looking online about HLHS. Some people think that when you find out bad news the last, worst thing you can do it look it up online, but hindsite has shown us that it was the best thing we could've done. We were not given very accurate info, coupled with hardly any hope at all, so looking online was good for us because we got some facts and found stories about kids living with this defect.
So much has happened since that day, one year ago. Up to that point it was the worst day I had ever had and I've had some bad ones. I'm grateful that I had friends to talk to and cry with and that so many people started praying for our baby immediately that day. I can still remember all of this as if it had just happened yesterday. And it still hurts as bad too. But I'm getting ready to go check on this baby, asleep in his crib and I will cry over him tonight as I did that night and thank God that we are on this journey. For without pain, you cannot appreciate happiness. And tonight I am happy. Talk to you later.
Sarah
