Nasal prong

[mellycat]

Hello all

My name's Mel, my son Archie was born in Dec 09 with Pierre Robin Sequence and a large horseshoe shaped cleft of the soft palate we had no idea when I was pregnant so a bit of a scary time.

He's doing really well, he is such a happy little baby and has put on over 4 lb since he was born mostly by feeding tube but boy does he try his hardest with his bottle.

He had a nasal prong put in by GOSH back in Jan and as horrible as it is it was really doing him a lot of good. We were back up there for it to be re sized this past week as he has grown quite a bit but after 2 sleep studies with 3 different sized prongs the docs did not seem 100% satisfied that the tube he now has in is as good as it could be, they sent us home as there is no risk to Archie but I'm still a little worried has anyone else been through this?

I've been on this site constantly since I found it, everyone seems so supportive & helpful. Any replies would be greatfully received

Hope you and your little ones are good

Mel

[tracie]

Hiya im sorry i cant help but my thoughts are with you and you little man! sounds like hes doing really well with his growing! xx

[rfeather]

Hi Mel!

I didn't know anything about nasal prongs so I did a search of the site and found this which you might find useful? It's from 2006 (didn't know we'd been running that long!) so some stuff may have changed but maybe not...

viewtopic.php?f=4&t=24&hilit=nasal+prong

Anyway welcome to the site and hope you find the answers you are looking for. Archie sounds a real little fighter bless him!

Ruth

[Dee]

Hiya,

My son is 16 months and was born with Pierre Robin fortunately though he didn't have a nasal prong so I'm afraid I can't help. I must say I've found the cleft team at GOSH to be really helpful and reassuring if you have any worries. Maybe give them a call.

Welcome to the site.

Dee

[Bex]

Hiya, My daughter Niamh was diagnosed with PRS when she was 2 days old, she was born at home and it got missed. She has a very wide cleft of the hard and soft palate (in fact she only had gums!) She is now 15 months old. Niamh had a feeding tube and was borderline for needing an airway but lucky her breathing improved and she managed without one.
So sorry i'm no help!! But just wanted to say Hi, I totally understand the shock! but it does get easier xx

[mellycat]

Thankyou so much for the replies, it's lovely to know there's people out there to talk to about this stuff

I hope you and your little ones are all okay

Mel
x

[Lisa Harvey]

Hi Mel

my little boy Daniel was born with PRS and that was only discovered at birth, so a total shock to me too.

He spent 2 months in hospital with both an NG tube and a nasal prong. We went home without the prong but with the ng tube for 11 months.

When he was about 3 it was decided to put the prong back, as his tongue kept blocking his airway at night, (totally fine during the day) As much as I hated it, and I really did!, I realised it was helping a lot to help him breath at night. I put it in each night, which wasn't great, but it was over quickly. He had it for about a year, and last Sept I found he could breath okay (ish) without it. i used to make my own!! a nasal prong with the prong holder sewn on (a GOSH method I am told) so it was neater on his face and looked better. The prongs were always the same size, I just cut them to 10 1/2 in size. Daniel also had a sleep study done, but it was a bit rubbish as it was in hospital and he didn't sleep much.

if you want to email me with any questions, please do!! also have some pics of Dan with his prong in!

Well done Archie on the good weight gain, and to you of course!!

take care

Lisa xxx

lisa.harvey@btinternet.com

[LauraS]

Hi Mel,

i realise this is a fairly old post!! but i thought i would reply anyway.
My youngest daughter Lucy was born with PRS and now is two. From birth lucy had a nasal prong and was ng fed.
I remember being at great ormond street for an oxcimetry test to adjust lucys prong length. i hated it, whenever they increased the size or length it would upset lucy and would cause terrible reflux. The reflux was so bad that lucy would cry and vomit pretty much continously. As a result the doctor would advise us to reduce the length of the prong to relieve the reflux. We would always end up with the prong being the same length as before the sleep study!! i remember one of the respiratory doctors telling me that changing the prong length was an art NOT a science!! Not much help!!

I hope you are getting on well

take care

laura x