bex
Our little princess
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- Apr 17, 2008
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We are off to birmingham childrens hospital tomorrow to meet Niamhs surgeon.
It was discovered when Niamh was 2 days old that she had a cleft palate. She has since been diagnosed with Pierre Robin Sequence, which is basically a cleft palate, small jaw and normal size tongue that slips back and often blocks her airway. Niamh has a ng tube and is tube fed every 3 hours. I'm hoping that they are pleased with niamhs progress and breathing and she won't need a tube to keep her airway open. We should also get some idea of when her operation will be. I stupidly googled pierre robin and found that 80% of children also have some other problems with heart, eyes, developmental delay, to name a few and i'm so hoping that niamh is one of the 20% that doesn't.
I know that Niamhs problems are fixable and won't be life threateningwhen her breathing settles down, but i'm still struggling to come to terms with whats happening and feel so guilty that she is going through this. I think i'm still in shock really, all my scans were fine so i presumed my baby would be healthy.
Sorry for moaning when alot of you in here are coping with much worse things.
Wish us luck x
It was discovered when Niamh was 2 days old that she had a cleft palate. She has since been diagnosed with Pierre Robin Sequence, which is basically a cleft palate, small jaw and normal size tongue that slips back and often blocks her airway. Niamh has a ng tube and is tube fed every 3 hours. I'm hoping that they are pleased with niamhs progress and breathing and she won't need a tube to keep her airway open. We should also get some idea of when her operation will be. I stupidly googled pierre robin and found that 80% of children also have some other problems with heart, eyes, developmental delay, to name a few and i'm so hoping that niamh is one of the 20% that doesn't.
I know that Niamhs problems are fixable and won't be life threateningwhen her breathing settles down, but i'm still struggling to come to terms with whats happening and feel so guilty that she is going through this. I think i'm still in shock really, all my scans were fine so i presumed my baby would be healthy.
Sorry for moaning when alot of you in here are coping with much worse things.
Wish us luck x
