Words from Loraya’s Mummy…
Never did I think I’d have to watch my perfect baby fight for life on numerous occasions, to be born with 3 major defects and still faces more surgery. To fight off pneumonia, sepsis, chest infections, collapsed lungs and survive a cardiac arrest! Countless blood transfusions and more medication than I can remember.
‘Ive been thrown in to a club no one wants to be in, actually 3 clubs, “nicu mumma”, “heart mumma” and “born unable to swallow”
My beautiful girl will have scars, scars that show how strong and amazing she is, truly a warrior! She has forte so hard and so much, more than most adults ever would! My beautiful girl oh how I wish I could swap places, as her heart slowly gets fixed mine is broken even more -keep up the fight my darling pumpkin, the bravest girl I know . I’m so so very proud and honoured to call you mine.
Update June 14th 2020
Loraya’s current diagnosis is exomphalous (at birth) tof/oa, tetralogy of fallot, dorv, mapcas, tracheomalacia, bronchmalacia, Gord, Unsafe swallow so NG fed, CPAP dependant for 16 hours a day and oxygen for her 2-4hourly breaks off CPAP and development delay- she’s my amazing fighter.
Loraya also had “full repair” on 21st November 2019 and it was such a hard long day, the surgery was a complicated one (typical Loraya) she had to go on bypass twice, had to have a VSD redo as there was more than first thought, recovery was really hard she was very poorly on lots of support and nitric oxide for a long time and had to go back to theatre a week after the initial surgery (plus a couple times after)where they found she had MAPCAS, which she had coiled, she was in complete heart block for 2 weeks post surgery and was on milirone for a long time but thankfully avoided a pace maker! We spent Christmas in Southampton but I didn’t really care our baby was still here and all my children with me, what more could I possibly want? Loraya then came home finally after the best part of her nearly 16 months life in hospital on 20th January 2020, where apart from a couple of visits has been amazing!
This is obviously a condensed version of events she really has been through a lot in her little life but she is the happiest little girl I’ve ever met with the most infectious smile and laugh.