I have decided to write this To keep all our friends and family updated on her progress throughout her heart surgery.
I wish I had started this when she was born on 7/11/17 @ 1:12am at 30 + 4 weeks 10 weeks early weighing a teeny tiny 938g (2lb). She was perfect our beautiful daughter was here. She was born in Jessops hospital at Sheffield When she was born she was took straight to another room where they was doctors & nurses all there to do what they needed to but after 5 minutes they come for Braiden to go and meet his daughter and when he come back I couldn’t believe it she was breathing on her own he took a photo and that’s all I seen for 8hours until I was well enough to be took down to the unit were she was with wires all over, machines beeping but in her incubator there was our girl so small so perfect. The love I felt was unbelievable. She was been fed 0.1ml of milk every two hours. We was only able to touch her through tiny holes on the incubator until 2 days after she was born the nurses aloud us to hold our baby for the first time kangaroo care which is skin to skin contact it was the best feeling in the world finally getting to hold our baby we sat for hours at a time just holding and staring at her so small and perfect we couldn’t believe our luck, after 4 days she was put on low flow oxygen as her levels was dipping a little we was there for 9 days then we got moved closer to home to Doncaster neonatal unit where we stayed for a further 9 weeks where she had hundreds of blood tests, 2 blood transfusions she went through a lot of a tiny baby. What our little girl has been through already some people don’t go through in there whole life. Me and Braiden was the only ones aloud to touch or hold Mireya until she was 5 weeks old and then nana & nanny finally got a long awaited hold for the first time. we spent Christmas, new year all in hospital as a family it certainly was a experience we won’t forget. We finally fetched Mireya home on 13/1/18 on low flow oxygen that alone was scary but it became natural to us after a week of been home it was hard work to go anywhere as we needed to change the tanks to a portable one and all her pipes it was difficult. That all seems like a distant memory now but at the time it was challenging, emotionally draining but we stayed strong and upbeat for our little miracle.
We found out Mireya had multiple VSD’s (VSD is a hole in the wall separating the two lower chambers of the heart) and a PDA (PDA, abnormal blood flow occurs between two of the major arteries connected to the heart.) when she was 10 days old and we was told there nothing to worry about as these will close on there own. Once we got discharged from the neonatal unit we then had to visit the cardiologist for a check up which was early February which then we got told the holes will no longer be able to closer on there own and would need surgery. But 4days after this appointment we had to rush Mireya into Leeds general as she was breathing really hard and not taking any bottles once she was examined she had fluid on her lungs which is where her heart was working to hard and she had serious heart failure, she got put on to a feeding tube and was on 9ml a hour for 18hoirs a day and slowly over 2 weeks this got upped to 23ml a hour and put on diuretics and a medicine called captopril which helps the heart work better. she is still on the feeding tube only and not aloud anything orally as this can cause her lungs to fill with fluid.
For Mireya to have full surgery to close the holes properly she would have to be 5kg (8lb 11oz) which she is no where near she is currently 3.255kg (7lb 6oz). They have now decided they can’t wait for surgery has she has major heart failure and needs the operation soon so they are going to put a band around the gaps and close the holes that way.
On Thursday 12th April we will have a full idea when surgery is, how the operation is going to be and how long etc we will meet with consultants and get a date for surgery very soon
We are at home atm cause the hospital can’t do anything for Mireya we can’t do. But it’s just so nice to be able to do some normal things in life and be a family in our home. X
I wish I had started this when she was born on 7/11/17 @ 1:12am at 30 + 4 weeks 10 weeks early weighing a teeny tiny 938g (2lb). She was perfect our beautiful daughter was here. She was born in Jessops hospital at Sheffield When she was born she was took straight to another room where they was doctors & nurses all there to do what they needed to but after 5 minutes they come for Braiden to go and meet his daughter and when he come back I couldn’t believe it she was breathing on her own he took a photo and that’s all I seen for 8hours until I was well enough to be took down to the unit were she was with wires all over, machines beeping but in her incubator there was our girl so small so perfect. The love I felt was unbelievable. She was been fed 0.1ml of milk every two hours. We was only able to touch her through tiny holes on the incubator until 2 days after she was born the nurses aloud us to hold our baby for the first time kangaroo care which is skin to skin contact it was the best feeling in the world finally getting to hold our baby we sat for hours at a time just holding and staring at her so small and perfect we couldn’t believe our luck, after 4 days she was put on low flow oxygen as her levels was dipping a little we was there for 9 days then we got moved closer to home to Doncaster neonatal unit where we stayed for a further 9 weeks where she had hundreds of blood tests, 2 blood transfusions she went through a lot of a tiny baby. What our little girl has been through already some people don’t go through in there whole life. Me and Braiden was the only ones aloud to touch or hold Mireya until she was 5 weeks old and then nana & nanny finally got a long awaited hold for the first time. we spent Christmas, new year all in hospital as a family it certainly was a experience we won’t forget. We finally fetched Mireya home on 13/1/18 on low flow oxygen that alone was scary but it became natural to us after a week of been home it was hard work to go anywhere as we needed to change the tanks to a portable one and all her pipes it was difficult. That all seems like a distant memory now but at the time it was challenging, emotionally draining but we stayed strong and upbeat for our little miracle.
We found out Mireya had multiple VSD’s (VSD is a hole in the wall separating the two lower chambers of the heart) and a PDA (PDA, abnormal blood flow occurs between two of the major arteries connected to the heart.) when she was 10 days old and we was told there nothing to worry about as these will close on there own. Once we got discharged from the neonatal unit we then had to visit the cardiologist for a check up which was early February which then we got told the holes will no longer be able to closer on there own and would need surgery. But 4days after this appointment we had to rush Mireya into Leeds general as she was breathing really hard and not taking any bottles once she was examined she had fluid on her lungs which is where her heart was working to hard and she had serious heart failure, she got put on to a feeding tube and was on 9ml a hour for 18hoirs a day and slowly over 2 weeks this got upped to 23ml a hour and put on diuretics and a medicine called captopril which helps the heart work better. she is still on the feeding tube only and not aloud anything orally as this can cause her lungs to fill with fluid.
For Mireya to have full surgery to close the holes properly she would have to be 5kg (8lb 11oz) which she is no where near she is currently 3.255kg (7lb 6oz). They have now decided they can’t wait for surgery has she has major heart failure and needs the operation soon so they are going to put a band around the gaps and close the holes that way.
On Thursday 12th April we will have a full idea when surgery is, how the operation is going to be and how long etc we will meet with consultants and get a date for surgery very soon
We are at home atm cause the hospital can’t do anything for Mireya we can’t do. But it’s just so nice to be able to do some normal things in life and be a family in our home. X
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