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Lily had a rattling noise that day we took her home from the hospital, she was 5days old and had been in the SCUBU unit as I had got ecoil while in labour.
That noise didnt go away as I was assured it would so I took her to the doctors to be told it’s just a bit of mucus, she might be getting a cold and not to worry.
The noise was just always there, I was told countless times it’s was just a cold, the last of a chest infection, or tonsillitis or bronchitis. But in the first year I was told more frequently told that it was first time mum
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fears.
Let me start by saying the nurses at the hospital, the doctors I have visited, the specialist all did there jobs correctly and were fantastic when needed, I am in no way knocking them. Lily has a rare cognatal condition called vascular ring and right ariotic arch this is where a loop is grown around her wind pipe and arches up to the heart, it restricts breathing, eating, coughing and is the main reason for all the chest and throat related infections. This condition is so rare know one would have been looking for it.
By 6 months I was
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told I’m just a nervous mum, I went home and said this to my husband who worries more than me and thank God he does. ”that noise is still there, take her back next time week” he would say.
By 18 months the doctors were sick of me persisting, and thought it was best to send her to ear, nose and throat specialist. Without the support of friends and family telling me I’m not crazy I don’t think I would have got to this point, but there was a Constant feeling that something was wrong. It’s like I just knew and would not except what they were telling
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me.
The specialist told me she had a floppy larynx which is at the back of the throat and she will grow out of it by the time she was 2.
Well 2 came and went, lily still got so many chest infections, and her breathing was still just as noisy. Back to the doctors we went. The doctors got back in touch with the specialist and made another appointment.
On the day we went the noise was not there, this would happen sometimes but not often. ”see she is fine” he said. I felt like I had hit a brick wall….. Husband to the rescue.
”she is not
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fine, you don’t see her when she cough so much she wakes herself up in the night, or how noisey it gets when she is running around!! His frustration was unfortunately coming out of this poor guy. ”she has been on inhalers, dairy free diets, she is nearly 3 something needs done”. It’s like he read my mind and every time I got to the point where I believed maybe I was just loosing the plot my husband was there to tell me I wasn’t.
Eventually he gave us an ultra sound on her chest, he said there is a small shadow and she will need to be seen in
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Glasgow childrens hospital.
I didn’t really think too much about it I just thought it would be another trip to see another person, so when I got a phone to say we will be in hospital for 2 days and they will put a camera down here throat to check her heart as well as her ear nose and throat my heart sank.
That was not a nice experience for any of us, I had to hold lily tight while they gave her the antistatic and she was so upset when she woke up, on top of it all I was 8 weeks pregnant and was constantly sick, I kept thinking have I put her
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through this for nothing?.
The surgent came to visit us on the ward after to tell us she has a vascular ring, he informed us she will have to have an operation of corrective surgery and someone will be I touch soon.
We have been back to see the surgent since, lily’s operation will be within the next few weeks, we will have to be in hospital for at least a week as long as everything goes to plan.
I am so glad something is being done, I am petrified as well, I didn’t want to be right, i am so grateful for my husband’s support he really is my
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best friend and rock . Wish us luck and remember a mother’s instinct goes long way.
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Veritylouise - 2 May 17
Lily had a rattling noise that day we took her home from the hospital, she was 5days old and had been in the SCUBU unit as I had got ecoil while in labour.
That noise didnt go away as I was assured it would so I took her to the doctors to be told it’s just a bit of mucus, she might be getting a cold and not to worry.
The noise was just always there, I was told countless times it’s was just a cold, the last of a chest infection, or tonsillitis or bronchitis. But in the first year I was told more frequently told that it was first time mum fears.
Let me start by saying the nurses at the hospital, the doctors I have visited, the specialist all did there jobs correctly and were fantastic when needed, I am in no way knocking them. Lily has a rare cognatal condition called vascular ring and right ariotic arch this is where a loop is grown around her wind pipe and arches up to the heart, it restricts breathing, eating, coughing and is the main reason for all the chest and throat related infections. This condition is so rare know one would have been looking for it.
By 6 months I was told I’m just a nervous mum, I went home and said this to my husband who worries more than me and thank God he does. “that noise is still there, take her back next time week” he would say.
By 18 months the doctors were sick of me persisting, and thought it was best to send her to ear, nose and throat specialist. Without the support of friends and family telling me I’m not crazy I don’t think I would have got to this point, but there was a Constant feeling that something was wrong. It’s like I just knew and would not except what they were telling me.
The specialist told me she had a floppy larynx which is at the back of the throat and she will grow out of it by the time she was 2.
Well 2 came and went, lily still got so many chest infections, and her breathing was still just as noisy. Back to the doctors we went. The doctors got back in touch with the specialist and made another appointment.
On the day we went the noise was not there, this would happen sometimes but not often. “see she is fine” he said. I felt like I had hit a brick wall….. Husband to the rescue.
“she is not fine, you don’t see her when she cough so much she wakes herself up in the night, or how noisey it gets when she is running around!! His frustration was unfortunately coming out of this poor guy. “she has been on inhalers, dairy free diets, she is nearly 3 something needs done”. It’s like he read my mind and every time I got to the point where I believed maybe I was just loosing the plot my husband was there to tell me I wasn’t.
Eventually he gave us an ultra sound on her chest, he said there is a small shadow and she will need to be seen in Glasgow childrens hospital.
I didn’t really think too much about it I just thought it would be another trip to see another person, so when I got a phone to say we will be in hospital for 2 days and they will put a camera down here throat to check her heart as well as her ear nose and throat my heart sank.
That was not a nice experience for any of us, I had to hold lily tight while they gave her the antistatic and she was so upset when she woke up, on top of it all I was 8 weeks pregnant and was constantly sick, I kept thinking have I put her through this for nothing?.
The surgent came to visit us on the ward after to tell us she has a vascular ring, he informed us she will have to have an operation of corrective surgery and someone will be I touch soon.
We have been back to see the surgent since, lily’s operation will be within the next few weeks, we will have to be in hospital for at least a week as long as everything goes to plan.
I am so glad something is being done, I am petrified as well, I didn’t want to be right, i am so grateful for my husband’s support he really is my best friend and rock . Wish us luck and remember a mother’s instinct goes long way.
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Full time mum to lily. part time massage therapist. New to blogging- really enjoying it and reading all the other great mum blogs
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