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01-23-2007, 02:14 AM
[left:c09847aa74]http://www.cherubs-cdh.org/Album/new/Halter-Taylor-Lynn2.jpg[/left:c09847aa74]Hi, I am Heather Fuhr. My fiancé, Troy Halter, and I had our third baby on August 25, 2002, at 1:00 a.m. in Madras, Oregon. My pregnancy was normal, except for the fact that I have a heart problem. When our daughter, Taylor-Lynn Faith Halter, was born we didn't know there was anything wrong with her. She wouldn't breath on her own, so the doctors took her away. My doctor came and told us that they thought her heart was on the wrong side. They intubated her and took X rays to make sure they got the tube in the right spot. When they did, they found her congenital diaphragmatic hernia. It was on her left side. The doctors decided to call in life flight since where she was born wasn't equipped to handle her hernia. They picked her up at 2:00 a.m. and flew her to Portland, Oregon to Legacy Emanuel Hospital. There they put her on a ventilator, nitric oxide, versed, fentenal and dopamine.
When she arrived at the hospital, they had her on a normal ventilator, but a few days later had to be put on a high frequency ventilator. She had pulmonary hypertension, systemic hypotension, pulmonary hypoplasia, and respiratory failure. This whole time all we got to do was look at her. We didn't get to hold her, not even after she was born. On August 28th, she had surgery to repair the hernia. It was supposed to last two hours-- it lasted four hours. Troy and I sat on pins and needles the whole time. When they finished, the surgeon came and told us that they got everything back, and they did not have to use gortex to patch it. There was enough skin to fix it. But they did tell us that her left lung was the size of a half dollar and her right was much smaller than it should be, but not as small as the other. We were told that she was fine otherwise. She had to have one blood transfusion and one does of exogenous surfactant. She was able to come off the nitric oxide on September 7th. She was then taken off the ventilator on September 10th.
We finally got to hold her two days later. She had a nasal canula, but other than that she looked okay to us, and we thought we could take her home soon. Boy, were we wrong. We had no idea what was to come. Taylor-Lynn was started on bottle feedings right after she came off of the ventilator. At first she did okay, but she slowly stopped nippling. We were so frustrated. The doctors decided to put a g- tube in. We weren’t too sure about that idea at first. I was afraid it would hurt her or that it would get pulled out. The doctors assured me that they had done this a hundred times and that she would be okay.
She had her first g-tube surgery on October 1st. It went well, and they planned on discharging her on the 8th. When we went to take her home, she had green and yellow stuff coming up her tube. The doctor decided not to let her come home. They took X rays and found that they had put a hole in her small intestine and that it was her stomach acids that were coming up her tube. They took Taylor-Lynn in for emergency surgery. The surgery took five hours, and they had to remove a two inch section of her small intestine. Once they did that, she was fine with her g-tube.
Taylor-Lynn finally came completely off oxygen on October 12th. She still had problems with nippling and reflux, so they put her on Prilosec and Reglan. The surgeons and NICU doctors decided she could come home on October 24th, one day shy of two full months in the NICU. I was in Walla Walla, Washington with our two other kids and did not have a way to Portland to get her. A wonderful program called Angel Flight flew to Walla Walla to get me and then flew us home from Portland. Taylor- Lynn is now home and happy. She has her big brother, Chance, and big sister, Jasmine, to play with her. We are still having problems with her g-tube-- she got a staph infection around it, and she is still on Reglan and Prilosec. But other than that she is doing wonderfully. We go back to Portland in December to get a button feeding tube put in, and she has to be seen by OT/PT. But for now we are trying to take things one day at a time. It has been a hard road to travel and will continue to be one. But we love our girl and finally have her home where she belongs.
2006 Update:
I would like to update my daughter Taylor-Lynn Faith Halter's story. She is now 3 1/2 years old and doing excellent. She had her feeding tube taken out at 5 months old. She has had problems with pneumonia through out the winters. But other than that she is great. She has passed all her physicals with flying colors and hasn't had any learning delays as of yet. Taylor-Lynn, her sister Jasmine, their step-dad Steve and I now live in Madras, Oregon and she is just like anyother 3 year old. She talks non stop, is very active and loves to pick on her big sister. I will never forget how terrifying it was to learn that my daughter was born with CDH and all the problems she has had, but it's getting easier to see her as a "normal" little girl The only way you can tell she's ever had any problems is her scars!! I thank God everyday for giving me a miracle child.
Written by Taylor-Lynn’s mom, Heather Fuhr (Washington)
2002, Updated 2006
When she arrived at the hospital, they had her on a normal ventilator, but a few days later had to be put on a high frequency ventilator. She had pulmonary hypertension, systemic hypotension, pulmonary hypoplasia, and respiratory failure. This whole time all we got to do was look at her. We didn't get to hold her, not even after she was born. On August 28th, she had surgery to repair the hernia. It was supposed to last two hours-- it lasted four hours. Troy and I sat on pins and needles the whole time. When they finished, the surgeon came and told us that they got everything back, and they did not have to use gortex to patch it. There was enough skin to fix it. But they did tell us that her left lung was the size of a half dollar and her right was much smaller than it should be, but not as small as the other. We were told that she was fine otherwise. She had to have one blood transfusion and one does of exogenous surfactant. She was able to come off the nitric oxide on September 7th. She was then taken off the ventilator on September 10th.
We finally got to hold her two days later. She had a nasal canula, but other than that she looked okay to us, and we thought we could take her home soon. Boy, were we wrong. We had no idea what was to come. Taylor-Lynn was started on bottle feedings right after she came off of the ventilator. At first she did okay, but she slowly stopped nippling. We were so frustrated. The doctors decided to put a g- tube in. We weren’t too sure about that idea at first. I was afraid it would hurt her or that it would get pulled out. The doctors assured me that they had done this a hundred times and that she would be okay.
She had her first g-tube surgery on October 1st. It went well, and they planned on discharging her on the 8th. When we went to take her home, she had green and yellow stuff coming up her tube. The doctor decided not to let her come home. They took X rays and found that they had put a hole in her small intestine and that it was her stomach acids that were coming up her tube. They took Taylor-Lynn in for emergency surgery. The surgery took five hours, and they had to remove a two inch section of her small intestine. Once they did that, she was fine with her g-tube.
Taylor-Lynn finally came completely off oxygen on October 12th. She still had problems with nippling and reflux, so they put her on Prilosec and Reglan. The surgeons and NICU doctors decided she could come home on October 24th, one day shy of two full months in the NICU. I was in Walla Walla, Washington with our two other kids and did not have a way to Portland to get her. A wonderful program called Angel Flight flew to Walla Walla to get me and then flew us home from Portland. Taylor- Lynn is now home and happy. She has her big brother, Chance, and big sister, Jasmine, to play with her. We are still having problems with her g-tube-- she got a staph infection around it, and she is still on Reglan and Prilosec. But other than that she is doing wonderfully. We go back to Portland in December to get a button feeding tube put in, and she has to be seen by OT/PT. But for now we are trying to take things one day at a time. It has been a hard road to travel and will continue to be one. But we love our girl and finally have her home where she belongs.
2006 Update:
I would like to update my daughter Taylor-Lynn Faith Halter's story. She is now 3 1/2 years old and doing excellent. She had her feeding tube taken out at 5 months old. She has had problems with pneumonia through out the winters. But other than that she is great. She has passed all her physicals with flying colors and hasn't had any learning delays as of yet. Taylor-Lynn, her sister Jasmine, their step-dad Steve and I now live in Madras, Oregon and she is just like anyother 3 year old. She talks non stop, is very active and loves to pick on her big sister. I will never forget how terrifying it was to learn that my daughter was born with CDH and all the problems she has had, but it's getting easier to see her as a "normal" little girl The only way you can tell she's ever had any problems is her scars!! I thank God everyday for giving me a miracle child.
Written by Taylor-Lynn’s mom, Heather Fuhr (Washington)
2002, Updated 2006