by ELC
I always wanted a little girl and even tho it wasn’t a planned pregnancy we found out we were pregnant again with a girl just a little after our son turned 8 months old.
It was a seemingly normal pregnancy till our anatomy scan at 21 weeks. We were so excited but it quickly turned to fear. The ultrasound tech got a worried look on her face and I asked if something was wrong with our baby. She responded yes, I can’t find her right lung. I believe she has
Congenital Cystic Adenomatoid Malformation (CCAM) She sent in for the doctor who said the same thing.
They sent us to a high risk specialist who gave us even worse news. They said it wasn’t CCAM but Congenital diaphragmatic hernia (CDH). She had a hole in her diaphragm which was allowing for her lower organs to migrate into her chest and her lungs weren’t growing.
We were strongly advised to abort. We were devastated.We don’t believe in abortion and decided that we would do whatever we could to give her the best chance at a normal life. After lots of research we went to Vanderbilt in Nashville and they confirmed she had both CCAM and CDH and said she had less than 10% chance of survival and advised abortion before we can’t legally but we were not giving up.
We found the number 1 specialist in the world for CDH, made an appointment and flew to St Petersburg FL. After lots of scans and tests he told us she would not only have a 90% chance of survival with him but would have a high quality of life. Right then the decision was made.
We were moving in just a few weeks to be in his care. Knowing we wouldn’t be able to hold her for a while I took to the internet looking for something to comfort her that was safe in the NICU and I came across The Zaky HUGs.
It was a no brainer. We made the decision from the beginning to give her the best life possible and I truly believed these would help do just that. We got a pair so she would have her dads scent and mine. When she was born she wasn’t breathing. It took them a while to get her intubated and stable.
She had her repair surgery at 18 hours old and was on a heart lung bypass machine. As soon as she came off that machine at 6 days old she got her Zaky HUGs.
She instantly calmed when they were placed around her cradling her butt and head. She improved everyday and I honestly feel it was because she had us “holding” her. She was expected to be in the hospital 6 months but was discharged after 42 days.
Thanks to Jehovah God, Dr. Kays, Tiny Hero and The Zaky HUGs we have our beautiful daughter.
We couldn’t have done it without them all.
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This is my favorite of her in the hospital. She always slept so peacefully with them. |
She is wonderful. She is 2 now 🙂
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