SunnieFaerie
03-05-2007, 12:06 AM
Before I begin with Jackson, I have to begin with my twins.
In March '04 I learned I was pregnant for the 5th time. (I had three children and had had one miscarriage.) I quickly suspected I was carrying twins and at 11 weeks, it was confirmed. I was terrified. My first thought was, I was going to have 4 in diapers as Justin (who was just over 3 had no interest in potty training. Korinne was not even 2.) I was adament that my tubes get tied after giving birth to them. At 21 weeks, I was admitted into the hospital in pre-term labor. I was measuring 40 weeks. After being in the hospital for almost 2 weeks, we finally learned I had developed twin-to-twin transfusion syndrome. (Happens only to identical twins that share a placenta. One twin donates all their blood and nutrients to the other.) We ended up delivering them at 23 weeks, 5 days. They lived for only half an hour.
Because of them dying, I refused to get my tubes tied. So on their original due date of 12/5 I concieved Jackson.
At our routine ultrasound, we were told there was fluid around his heart and we were sent for a level 2 ultrasound. At that appointment, we were told there was a mass near his heart so I was sent for an MRI. The results from that told us he had Congenital Diaphragmatic Hernia. He had a hole in his diaphragm and his intestines were in his chest cavity, affecting the growth of his left lung. We were lucky that it was only his intestines. Worst case have the liver and stomach also in the chest cavity.
We knew in advance that as soon as he was born, he would be taken away and put on a ventilator. He was on an ECMO machine and ventilator for 3 weeks. He had surgery at 2 weeks to correct the hernia. I was finally able to hold him when he was exactly 3 weeks old.
At one of my daily visits, I noticed a bump on the back of his head. The top of his head was ridged and his forehead was narrow. I asked his nurse about it and she said, "Oh that's normal." I asked her how many kids she had, none. I thought, "Lady, I have 3 kids at home, this is not normal." I made a mental note to ask the doctor about it. But before I could, the doctor came to me and said they suspect craniosynostosis. I had no idea what she was talking about so when I went home, I did research on it.
I was horrified! I mean, the CDH was bad enough then he has this! We later learned that all of his sutures, except the lambdoid, had prematurely closed. He had surgery on February 13, 2006 at just under 6 months old. Because he was small, instead of repositioning his skull, they took small portions out. That was the longest day of my life.
He wore a helmet for 9 months. He's been helmet free since January. He looks wonderful! You can see pics of him both with and without the helmet on my myspace page at http://www.myspace.com/sunniefaerie
So that's my Jackson's journey so far. There's more, but I'll stop for now. LOL
In March '04 I learned I was pregnant for the 5th time. (I had three children and had had one miscarriage.) I quickly suspected I was carrying twins and at 11 weeks, it was confirmed. I was terrified. My first thought was, I was going to have 4 in diapers as Justin (who was just over 3 had no interest in potty training. Korinne was not even 2.) I was adament that my tubes get tied after giving birth to them. At 21 weeks, I was admitted into the hospital in pre-term labor. I was measuring 40 weeks. After being in the hospital for almost 2 weeks, we finally learned I had developed twin-to-twin transfusion syndrome. (Happens only to identical twins that share a placenta. One twin donates all their blood and nutrients to the other.) We ended up delivering them at 23 weeks, 5 days. They lived for only half an hour.
Because of them dying, I refused to get my tubes tied. So on their original due date of 12/5 I concieved Jackson.
At our routine ultrasound, we were told there was fluid around his heart and we were sent for a level 2 ultrasound. At that appointment, we were told there was a mass near his heart so I was sent for an MRI. The results from that told us he had Congenital Diaphragmatic Hernia. He had a hole in his diaphragm and his intestines were in his chest cavity, affecting the growth of his left lung. We were lucky that it was only his intestines. Worst case have the liver and stomach also in the chest cavity.
We knew in advance that as soon as he was born, he would be taken away and put on a ventilator. He was on an ECMO machine and ventilator for 3 weeks. He had surgery at 2 weeks to correct the hernia. I was finally able to hold him when he was exactly 3 weeks old.
At one of my daily visits, I noticed a bump on the back of his head. The top of his head was ridged and his forehead was narrow. I asked his nurse about it and she said, "Oh that's normal." I asked her how many kids she had, none. I thought, "Lady, I have 3 kids at home, this is not normal." I made a mental note to ask the doctor about it. But before I could, the doctor came to me and said they suspect craniosynostosis. I had no idea what she was talking about so when I went home, I did research on it.
I was horrified! I mean, the CDH was bad enough then he has this! We later learned that all of his sutures, except the lambdoid, had prematurely closed. He had surgery on February 13, 2006 at just under 6 months old. Because he was small, instead of repositioning his skull, they took small portions out. That was the longest day of my life.
He wore a helmet for 9 months. He's been helmet free since January. He looks wonderful! You can see pics of him both with and without the helmet on my myspace page at http://www.myspace.com/sunniefaerie
So that's my Jackson's journey so far. There's more, but I'll stop for now. LOL