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01-22-2007, 11:00 PM
[left:1f4db1709f]http://www.cherubs-cdh.org/Album/new/morgana2.jpg[/left:1f4db1709f]Avery is ½ of a set of Boy/Girl twins born 11/2/97. They were born at 28 weeks. Her CDH was not yet detected. I had gone in 3 days prior for an ultrasound and they couldn't find her stomach. I was supposed to go in the following week for another ultrasound (which is where they would have most likely found the CDH), but the twins had other plans. I went into labor and they couldn't stop it. No one knows why. The only theory anyone can come up with was that Avery knew something was wrong and wanted out -self-aborting. Unfortunately, Connor was on the bottom and had to go first. He was head down and she was delivered breech.
After routine x-rays right after they were born, it was found that Connor had a mal-rotated intestine and Avery had, either, a Diaphragmatic Hernia or Diaphragmatic Eventration.
Avery was on a regular ventilator for a few days then she got a pneumothorax and was put on an oscillating ventilator for 3 ½ weeks. During this time, through ultrasounds, they didn't see a hole in her diaphragm so they deduced that it was Eventration. They had to use steroids to get her off of the vent.
Meanwhile, Connor had his operation to fix his mal-rotation at a different hospital and did I mention that we had a 15-month-old boy at home through all of this? Anyway, we kept asking when they were going to operate on Avery. They kept putting it off. First she had to gain enough weight, then they weren't sure if they were going to at all. They thought the eventration may fix itself as she gets bigger. In the meantime, she is struggling for every breath. Finally, 2 1/2 months later, 1/2/98 they operated on her. That's when they found the hernia. They put a g-tube in at the same time. We only used it for about a month. She would projectile vomit with every feed whether we used the tube or not so we didn't, since I was still trying to breastfeed - which she never did and after 8 months of trying I finally gave up. She did the projectile thing for over a year. She had ROP that self resolved but she also had strabismus. She had surgery to have that repaired in both eyes on 12/29/98 and never threw up again.
She is developmentally behind. May have CP but has not been diagnosed with it yet. She is just starting to walk and talk. She is very tiny. Only 19 lbs. but she has a mighty will and will always be my hero!
Written by Avery's mom, Michelle Morgan (Missouri)
2000
After routine x-rays right after they were born, it was found that Connor had a mal-rotated intestine and Avery had, either, a Diaphragmatic Hernia or Diaphragmatic Eventration.
Avery was on a regular ventilator for a few days then she got a pneumothorax and was put on an oscillating ventilator for 3 ½ weeks. During this time, through ultrasounds, they didn't see a hole in her diaphragm so they deduced that it was Eventration. They had to use steroids to get her off of the vent.
Meanwhile, Connor had his operation to fix his mal-rotation at a different hospital and did I mention that we had a 15-month-old boy at home through all of this? Anyway, we kept asking when they were going to operate on Avery. They kept putting it off. First she had to gain enough weight, then they weren't sure if they were going to at all. They thought the eventration may fix itself as she gets bigger. In the meantime, she is struggling for every breath. Finally, 2 1/2 months later, 1/2/98 they operated on her. That's when they found the hernia. They put a g-tube in at the same time. We only used it for about a month. She would projectile vomit with every feed whether we used the tube or not so we didn't, since I was still trying to breastfeed - which she never did and after 8 months of trying I finally gave up. She did the projectile thing for over a year. She had ROP that self resolved but she also had strabismus. She had surgery to have that repaired in both eyes on 12/29/98 and never threw up again.
She is developmentally behind. May have CP but has not been diagnosed with it yet. She is just starting to walk and talk. She is very tiny. Only 19 lbs. but she has a mighty will and will always be my hero!
Written by Avery's mom, Michelle Morgan (Missouri)
2000