kit10grl
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My baby girl is 13 days old.
We knew during pregnancy that she had a coarctation of the aorta and were told in a last minute scan on the day she was born they had also detected a hole in her heart. Once born these issues seemed to take a back seat to a problem with her breathing which has menat the back of her nose is blocked and she can only breathe through her mouth.
She was placed into NICU in the local hospital where she was born and at a few days old was put under GA so they could place stents in her nose to open her airway. They discovered the holes are so small they need to drill the bone to open them up. We have been transferred to Yorkhill Sick Kids hospital for this process to be carried out and were told we would be home after one weekend.
Well, when we got here we were told that actually her nose issue could wait. Her heart problems were way worse than first thought and that the operation to repair it was very serious that she could very well die during it but that if she didnt have the operastion she would most defintiyl die in a few weeks. They swayed back and forth over wether to do two seperate ops or one big one and deal with all the issues together.
In the end they decided one major op was better and so at only 8 days old my newborn whom i have held for less than about an hour of her life went into open heart surgery. I have never felt so useless in my whole life as i did that day. But by bedtime the surgeon returned to us and told us everything went according to plan and he expected oru little girl to make a full recovery. I could have kissed him.
In the last few days in NICU she has been weaned off almost all her lines, the pacer box and alomst every connection she had to machines so much so that i have been allowed to have her out for a cuddle despite her still haveing a breathing vent in.
They are hopeful that they can perfomr her second surgery in the next few days and that they can then remove the vent and she will be able to breathe and feed without the tubes.
It has felt like such a long time already i cant believe its been less than two weeks.
We knew during pregnancy that she had a coarctation of the aorta and were told in a last minute scan on the day she was born they had also detected a hole in her heart. Once born these issues seemed to take a back seat to a problem with her breathing which has menat the back of her nose is blocked and she can only breathe through her mouth.
She was placed into NICU in the local hospital where she was born and at a few days old was put under GA so they could place stents in her nose to open her airway. They discovered the holes are so small they need to drill the bone to open them up. We have been transferred to Yorkhill Sick Kids hospital for this process to be carried out and were told we would be home after one weekend.
Well, when we got here we were told that actually her nose issue could wait. Her heart problems were way worse than first thought and that the operation to repair it was very serious that she could very well die during it but that if she didnt have the operastion she would most defintiyl die in a few weeks. They swayed back and forth over wether to do two seperate ops or one big one and deal with all the issues together.
In the end they decided one major op was better and so at only 8 days old my newborn whom i have held for less than about an hour of her life went into open heart surgery. I have never felt so useless in my whole life as i did that day. But by bedtime the surgeon returned to us and told us everything went according to plan and he expected oru little girl to make a full recovery. I could have kissed him.
In the last few days in NICU she has been weaned off almost all her lines, the pacer box and alomst every connection she had to machines so much so that i have been allowed to have her out for a cuddle despite her still haveing a breathing vent in.
They are hopeful that they can perfomr her second surgery in the next few days and that they can then remove the vent and she will be able to breathe and feed without the tubes.
It has felt like such a long time already i cant believe its been less than two weeks.
we're always here with an ear xxx
Sending you hugs, and we're always here if you need to vent xxxxx
