I had a perfect pregnancy with Maisie, got to full term with little to no issues. Scans were all perfect, nothing showed anything wrong. At 15 hours old she was a horrible blue/grey colour when midwife come to check the following morning- she was then rushed off to neo-natal where specialists rushed from Yorkhill Children's hospital in Glasgow to collect her. When saying our goodbyes to our tiny baby now covered in tubes and monitors, not knowing what was wrong until further tests, being told we know it's her heart but nothing else is heart breaking.
On discharging myself, I rushed to my baby now at a different hospital to be by her side. On the evening of the next day after tests and scans shown she was born with transposition of the great arteries (heart flowing blood completely the wrong way around the body) and the only thing keeping her alive was a tiny hole her heart had formed during very early pregnancy. We found ourselves signing consent forms at 9pm. At 3 days old she underwent open heart surgery. She was in intensive care for 2 weeks. She was discharged on the 3rd week and we went home - she was doing amazing. Then we had a routine newborn screening which showed us she had a hearing loss and needed to be investigated further. She was later fitted with hearing aids at 5 months old and continued to have routine tests - I knew in my heart my baby wasn't hearing me. By her 1st birthday she lost most of her hearing and was referred to Crosshouse hospital to begin a cochlear implant assessment. This involved sedated MRI scans and hearing tests under sedation for best accurate results. Through these scans we found out she has enlarge vestibular aqueducts. (This had caused her to become profoundly deaf) my world crushed once again as I was told it's a progressive hearing loss and permanent. 9 months after testing we got the go ahead for bilateral cochlear implants which were then fitted November 2013 and switched on in December 2013. Everything was going great, making sounds until April 2014 where one implant site was swelling and getting worse. She was admitted to Crosshouse on the Saturday and placed on IV antibiotics for 5 days. There was no improvement on swelling so the surgeon made the decision to go back to theatre and remove that implant. This was re-implanted June 2014 and switched on July 2014.
Everything is now going great. Her speech is great and bsl is fantastic - she a super great signer.