Well I thought that since some friends that I have check my blog have kids or are going to have kids with CDH that I should share Kristen's story. I have to say that during the time that we went through it I didn't want a lot to do with anyone else and their stories. But now that we are living the aftermath with a 3 year old survivor, things somehow are different. I'm not afraid to network, and share. It was a difficult time for us. I will be the first to admit that I don't think that we took the diagnosis as seriously as it is. We thought middle of the pack, and we'd be home in no time. We had no idea how 'bad' it could really get. We didn't really believe when we were pregnant that we really could lose her. I did the 'research' online that I could, but never connected with anyone 'real' going through it or having gone through it.
I sometimes feel that now, I follow other's stories, journey's, and blogs, just to re-open all of the emotions that I went through then. I cry every time I hear of a CHERUB earning their wings. I have such anger, frustration, and so many more questions of WHY??!! I think that that is the reason why I have a hard time dealing with it. There is no one to 'blame' or truely explain 'why' 'how come' or who deserves this. I know in my mind that God only sends us blessings that he knows that we can handle. But my heart gets so mad at him for this pain that he sends these families, including my own. Don't get me wrong, I am sooooo greatful that Kristen is here with us. I am sooooo greatful that she can hug me everyday. But I get so angry that she has to deal with such adult issues at such a young age.
I'm not sure if this is going to be theraputic for me or not in sharing this in writing. I haven't done that yet. I do 'chat' online with other mom's in sharing experiences. Sometimes that helps, sometimes not. Well I'll quit rambling and here's a copy of Kristen's story that I wrote for a girl in Bristol that asked for shared experiences in CDH and used our story for her research paper.
We became pregnant with our second child in June 2005. We were very excited to know that we were adding another member to our family. Everything was on the same path during pregnancy as our first. The same problems I had, hypoactive thyroid, gestational diabetic. At the 19 week ultrasound the technician asked us to switch rooms, 'I'm new here and the equipment is different" she told us. So we switched rooms, took our ultrasound picture and went on our way. The next week I received a phone call from the Dr's office letting me know that the heart of the baby was shifted and we needed to go for a Stage 2 ultrasound at BC Women's and Children's hospital. We didn't think too much of it, as we knew lots of people that had been referred to Children's and had nothing wrong with the baby. We thought just precautions. At 21 weeks my mom and I went to the appointment. I didn't think that my husband needed to be there and take the day off of work just to go thru the questions.
I was wrong. They did the ultrasound and told me that my baby's diaphragm had a hole in it. It looked like there was liver up there on the right side. We went to lunch and then had the big meeting with the neonatologists and Dr's and support team. There was a thickening at the base of the baby's neck that gave them an indicator of a chromosomal disorder. We were told that with the CDH and a disorder that the baby would not make it past birth, it would be to weak with all of the other issues. They offered me amnio. I accepted. I have to say in the time of waiting for the amnio results, I had never wanted to spontaneously miscarry so much in my life as then. I didn't want to make the decision to terminate! I didn't feel that it was a right choice for me, and if the baby wouldn't make it past birth, was it worth to carry to term??!! We decided that if it was just CDH we would carry to term with the chances of survival that we were given of 50-85%. If the amnio came back positive, I still can't truthfully answer that question to this day!
After 2 weeks of waiting I was given the phone call at work, the amnio was all clear. Well all clear of the chromosomes that they check with amnio. And I was told....it's a girl. It was Kristen Marie Taylor!
There was lots of back and forth to the hospital for regular ultrasounds, and check-ups. I ended up with extra fluid, and measured 8 weeks bigger!!! Yikes!!! At 26 weeks my cervix began to shorten. I asked if I took it easy could I still work, I needed my 700 hours to get another year of maternity leave. They said yes. By 29 weeks my cervix was at 1.3 cm and I was asked not to work and put on immediate bed rest. I got my 700 hours and could relax. I had regular light contractions, but she hung on. I was also at a higher risk of pre-term delivery as my first son was born at 33.5 weeks, so I had a fear. The Dr's wanted at least 32 weeks out of me. At 35 weeks I was 4 cm dilated with big long hard contractions every 1 -1.5 hours that lasted 10 minutes!! So they admitted me to the hospital, as I live almost an hour from the hospital, and they wanted me close. 2 weeks later she came. Feb. 12, 2006 @ 8:59pm weighing...well they didn't because she was so fragile. They guess about 6.5 lbs. My water finally broke at 37 weeks 1 day, and two hours later Kristen silently arrived. They whisked her into another room to work on her. I told my husband to go and check on her. He said the room was crazy and there was like 20 people in there! They wheeled her into see me and meet her and whisked her off to the NICU.
Now the journey really begins!
The dr's looked at my husband and said it's bad, really bad. After they tried the conventional ventilator, oscillator, they moved her to ECMO after 36 hours. We never thought that it would come to ECMO. She chugged along, and after 3 days of ECMO I called to see how she was doing, and they had told me that she had a stroke in the occipulit portion of her brain. They checked the previous ultrasounds of her brain and saw the shadow there from earlier ultrasounds but it was small and easily overlooked. So they kept her going on ECMO. She suffered a blood clot in her left leg as well from a pik line. She slowly stopped peeing, as her kidney's failed due to the low blood pressure. That damn pulmonary hypertension. They tried to wean her off of ECMO after 7 days, but she reisited. She hated change and movement! So she was heavily sedated. On day 9 the dr said that they would repair the hole. Scary because of the blood thinner's that they use for the ECMO circuit. So away she went, and back she came with all of her organs where they belonged. Her liver and small and large bowel had herniated. The hole was big, and because she was on ECMO they used the gortex patch.
After 12 days on EMCO, she came off!! Still sedated to keep her comfortable and to keep from pulling all of the tubes out. We had still never seen her eyes open. I would go in and count the IV bags, and pumps, and asked her blood type....A positive. I needed something to hang onto. They had her name spelled wrong at first...Kristin. I didn't let them know until she was 5 weeks old. I spoke to the nurse and said, please don't think that I'm weird, but I didn't say anything before because it just didn't matter at the time, but her name is spelled wrong!! The nurse laughed with me and understood! She had it all changed by the time we came to visit next. Kristen was still on the dialysis for her kidney's. We spoke to the renal specialist, and she felt that if she didn't pee in the next day, that she may never do it with those kidney's. She felt the likeliness of her having a kidney transplant at the age of 2 was more than likely and it would be a miracle for her to use her own kidney's. She pee'd the very next day. Just a drop, but that was a start.
Suddenly when Kristen was 1.5 mths old we got a call that she had gone septic!! I didn't know what to do! We kept in close call contact with them and were told that she actually needed at PDA ligation. Wow, just another bump in the road. Kristen still was on dialysis and the vent. After the PDA ligation everything just started to fall into place. Two days later her kidney's began to fully function, so she came off of dialysis. And within that week, she came off of ventilator's!! We held her for the first time. She was almost 2 mths old!
She moved to the ward, on an NJ tube feed. They slowly switched to the NG continuous feed. Her reflux was something awful. She would feed and puke, feed and puke. I just wanted her home. They were worried to send her home with tube feeds, and the blood thinner that she was on for the blood clot. I assured them that I could do it. On Monday May 8,2006 I knew that the dr's did rounds on Mon's. I went and sat there waiting for the team. I told them that I owned her. And wanted to take her home. They asked the nurses that had worked with me in working with Kristen, and they assured them that I was capable of it. They said ok, maybe in the next day or two. I told them no, tomorrow! It's my Birthday! They said that they would try. Well they did it. I took Kristen home on May 9, 2006.
After she was home for a month she finally really pulled out her NG tube. So I left it. I fought long and hard with the dr's about the G-tube. I was convinced that it was her terrible reflux. I wanted stronger med's first. I prevailed. Kristen is a complete oral eater.
At 4 mths old they tested her hearing, as she was at risk with CDH, ECMO, the vent's, etc. She was hearing. At 7.5 mths old, we tested again. She was profoundly deaf in both ears. She got her first pair of hearing aids at 10 mths old, with no response. She was implanted with the cochlear implant at 22 mths old. It's amazing to call her name and have her come to us or turn her head.
We have had struggles with textures of food, but we're still working on that. She is developmentally behind, but on her own curve. She is small, but so is her healthy little sister.
During the actual time that we went thru the hospitalization with Kristen. I didn't want to connect with other families. I find now that it is more healing to share my experience and other families experiences as I've grieved her illness.
Kristen is a very happy little girl, and we are so lucky to have her with us!
Thank-you Bobbi Taylor (Her mom)
I was wrong. They did the ultrasound and told me that my baby's diaphragm had a hole in it. It looked like there was liver up there on the right side. We went to lunch and then had the big meeting with the neonatologists and Dr's and support team. There was a thickening at the base of the baby's neck that gave them an indicator of a chromosomal disorder. We were told that with the CDH and a disorder that the baby would not make it past birth, it would be to weak with all of the other issues. They offered me amnio. I accepted. I have to say in the time of waiting for the amnio results, I had never wanted to spontaneously miscarry so much in my life as then. I didn't want to make the decision to terminate! I didn't feel that it was a right choice for me, and if the baby wouldn't make it past birth, was it worth to carry to term??!! We decided that if it was just CDH we would carry to term with the chances of survival that we were given of 50-85%. If the amnio came back positive, I still can't truthfully answer that question to this day!
After 2 weeks of waiting I was given the phone call at work, the amnio was all clear. Well all clear of the chromosomes that they check with amnio. And I was told....it's a girl. It was Kristen Marie Taylor!
There was lots of back and forth to the hospital for regular ultrasounds, and check-ups. I ended up with extra fluid, and measured 8 weeks bigger!!! Yikes!!! At 26 weeks my cervix began to shorten. I asked if I took it easy could I still work, I needed my 700 hours to get another year of maternity leave. They said yes. By 29 weeks my cervix was at 1.3 cm and I was asked not to work and put on immediate bed rest. I got my 700 hours and could relax. I had regular light contractions, but she hung on. I was also at a higher risk of pre-term delivery as my first son was born at 33.5 weeks, so I had a fear. The Dr's wanted at least 32 weeks out of me. At 35 weeks I was 4 cm dilated with big long hard contractions every 1 -1.5 hours that lasted 10 minutes!! So they admitted me to the hospital, as I live almost an hour from the hospital, and they wanted me close. 2 weeks later she came. Feb. 12, 2006 @ 8:59pm weighing...well they didn't because she was so fragile. They guess about 6.5 lbs. My water finally broke at 37 weeks 1 day, and two hours later Kristen silently arrived. They whisked her into another room to work on her. I told my husband to go and check on her. He said the room was crazy and there was like 20 people in there! They wheeled her into see me and meet her and whisked her off to the NICU.
Now the journey really begins!
The dr's looked at my husband and said it's bad, really bad. After they tried the conventional ventilator, oscillator, they moved her to ECMO after 36 hours. We never thought that it would come to ECMO. She chugged along, and after 3 days of ECMO I called to see how she was doing, and they had told me that she had a stroke in the occipulit portion of her brain. They checked the previous ultrasounds of her brain and saw the shadow there from earlier ultrasounds but it was small and easily overlooked. So they kept her going on ECMO. She suffered a blood clot in her left leg as well from a pik line. She slowly stopped peeing, as her kidney's failed due to the low blood pressure. That damn pulmonary hypertension. They tried to wean her off of ECMO after 7 days, but she reisited. She hated change and movement! So she was heavily sedated. On day 9 the dr said that they would repair the hole. Scary because of the blood thinner's that they use for the ECMO circuit. So away she went, and back she came with all of her organs where they belonged. Her liver and small and large bowel had herniated. The hole was big, and because she was on ECMO they used the gortex patch.
After 12 days on EMCO, she came off!! Still sedated to keep her comfortable and to keep from pulling all of the tubes out. We had still never seen her eyes open. I would go in and count the IV bags, and pumps, and asked her blood type....A positive. I needed something to hang onto. They had her name spelled wrong at first...Kristin. I didn't let them know until she was 5 weeks old. I spoke to the nurse and said, please don't think that I'm weird, but I didn't say anything before because it just didn't matter at the time, but her name is spelled wrong!! The nurse laughed with me and understood! She had it all changed by the time we came to visit next. Kristen was still on the dialysis for her kidney's. We spoke to the renal specialist, and she felt that if she didn't pee in the next day, that she may never do it with those kidney's. She felt the likeliness of her having a kidney transplant at the age of 2 was more than likely and it would be a miracle for her to use her own kidney's. She pee'd the very next day. Just a drop, but that was a start.
Suddenly when Kristen was 1.5 mths old we got a call that she had gone septic!! I didn't know what to do! We kept in close call contact with them and were told that she actually needed at PDA ligation. Wow, just another bump in the road. Kristen still was on dialysis and the vent. After the PDA ligation everything just started to fall into place. Two days later her kidney's began to fully function, so she came off of dialysis. And within that week, she came off of ventilator's!! We held her for the first time. She was almost 2 mths old!
She moved to the ward, on an NJ tube feed. They slowly switched to the NG continuous feed. Her reflux was something awful. She would feed and puke, feed and puke. I just wanted her home. They were worried to send her home with tube feeds, and the blood thinner that she was on for the blood clot. I assured them that I could do it. On Monday May 8,2006 I knew that the dr's did rounds on Mon's. I went and sat there waiting for the team. I told them that I owned her. And wanted to take her home. They asked the nurses that had worked with me in working with Kristen, and they assured them that I was capable of it. They said ok, maybe in the next day or two. I told them no, tomorrow! It's my Birthday! They said that they would try. Well they did it. I took Kristen home on May 9, 2006.
After she was home for a month she finally really pulled out her NG tube. So I left it. I fought long and hard with the dr's about the G-tube. I was convinced that it was her terrible reflux. I wanted stronger med's first. I prevailed. Kristen is a complete oral eater.
At 4 mths old they tested her hearing, as she was at risk with CDH, ECMO, the vent's, etc. She was hearing. At 7.5 mths old, we tested again. She was profoundly deaf in both ears. She got her first pair of hearing aids at 10 mths old, with no response. She was implanted with the cochlear implant at 22 mths old. It's amazing to call her name and have her come to us or turn her head.
We have had struggles with textures of food, but we're still working on that. She is developmentally behind, but on her own curve. She is small, but so is her healthy little sister.
During the actual time that we went thru the hospitalization with Kristen. I didn't want to connect with other families. I find now that it is more healing to share my experience and other families experiences as I've grieved her illness.
Kristen is a very happy little girl, and we are so lucky to have her with us!
Thank-you Bobbi Taylor (Her mom)
One thing the Dr's never prepare you for is going home. They prepare you for the surgery, the %'s of everything. But never what it's like to take a 'sick' kid home.
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