Hi,

Ng tube could be in until after surgery, nasal airway could be in 6 weeks to 6 months, there is no time line, just when she is ready. We had to go back to hospital today as breathing got worse again so nasal airway is now down the same side as ng tube, but things are better now.

Take care

Lynn
xx

God how stressful having to go back to the hospital. Poor little Ava. Fingers crossed you won’t have to do that too soon again. Yourself and Rhian’s nerves must be in shreds.

Take care,
Dee

Sorry haven’t been on for a few days, Niamh has an infection in the hole of her hard palate (which everyone finds very strange a she has only had her soft palate repaired!!) Anyway, had a rough few days with her but i’m thrilled to read that your darling Ava is home, its really cheered me up.

Hope you soon settle into your own little routine and i also hope you find a home for all your medical equipment.  When we had our first delivery of feeding equipment i nearly had a nervous breakdown!!  We had 2 piles of boxes that stacked to the ceiling and it was 2 weeks before xmas aswell.  We had to put it all in the loft!!

I just wanted to say we were told that Niamh would have her feeding tube in for 9 months.  I was determined she wouldn’t and with a lot of hard work trying to get her to have her bottle Niamh had her tube removed at 10 weeks (well she pulled it out herself!) I know all Pierre Robin babies are different and of course Ava has the added complication of the airway but i just wanted to give you a little bit of hope that things might move a little quicker than you’ve been told.
The Ng tube will make her bigger and stronger so then hopefully her breathing will improve.
Will keep checking up on Ava’s progress
Sending you all our best wishes Rebecca and Niamh xx

Here’s a photo of Niamh at 5 days.

Here’s a photo of Niamh at 6 weeks.

Niamh at 6 months.  She is now 8 months so will post a more recent one soon as the files on my other photos are too big to upload.

Just wanted to show you that they do get bigger and stronger.  Niamh is still hard work and feeding can be a nightmare.  She is already a little tinker, she is into everything and her cheeky smile gets her out of most of the trouble she gets herself in. God help me when she’s 16!!

Hiya just popping on to see how things are going with Ava, hope you are all ok Rebecca

Hi Rebecca,

Photos are lovely, what a beautiful girl

Ava putting on weight really well, still an ounce a day, but most of her feed still goes down her ng tube. Ava is back in hospital tonight for oxygen monitoring as her breathing is up and down. Her nasal airway has been changed for a bigger one today and hoping that does the trick as the next step is a trachyostomy which we are trying to avoid at all costs. The hospital has decided we need an oxygen saturation monitor at home now so we can keep a closer eye on her.

Thanks for asking about her

Lynn

Hi Lynn,

Sorry to hear that Ava’s breathing been so up and down. Hope it does settle down for her. Keeping my fingers crossed that it doesn’t go down the tracheotomy route.

Take care,
Dee

Hi Dee,

Ava doing really well now. She has a bigger airway in and that seems to be working well. She is gaining weight and is altogether a happier baby. She has been started on anti-reflux medicines and has a feeding pump now which runs continously overnight. The only downside of having the pump is that it takes so long during the day to feed Ava as the remaining volume from her bottles has to be put through the pump over an hour otherwise she is sick, which means more equipment for going out.

Ava has managed to stay out of hospital for 2 weeks now

Lynn

Hi Lynn,

Great to hear from you, had been wondering how little Ava was doing. Was hoping that the old adage ‘no news is good news’ was true. Such a bummer that she has reflux as well, as if she didn’t have enough going on.

Fab that you’ve all gone 2 weeks without having to visit the hospital you musn’t know yourselves.

Fingers crossed things continue to improve.

Take care,
DeeX