Pregnancy & Birth Clubs <
14/01/2014 at 17:39
Hi to those who know me
Just thought I'd bob on whilst I had five mins and update you all.
We remain in NICU . J is doing well, but is still having apneas and desaturations which is really the one thing stopping us from going home. J is off all breathing support now. We've been in NICU 16 weeks now and its beginning to take its toll on me mentally. This is not helped by today receiving a phone call from the hospital to say they are moving him to our local level 1 unit to create room. I'm sure they are all lovely but I have spent the last 11 weeks getting to know the staff at Peterborough and now have to do it all over again at Boston when we are so close to home.
He has a diagnosis of severe reflux confirmed by a barium swallow, and has chronic lung disease. He's also failed part of his hearing test so we have to be reviewed in 8 months from that point of view. Saying that he's developing his own little personality and we have play specialists seeing him to help with his development.
Here is a picture for those interested. He's lost the nasal cannula now.....I hope you all are well and things are much more straight forward for you all!
14/01/2014 at 17:44
What an absolutely beautiful face he has! :)
14/01/2014 at 17:49
Oh what a cutie, love that pic! Sorry to hear he is still in hospital, and that he's still having a few complications. Have they been able to give an indication of how long before he can come home?
Hope it's not too long and he improves quickly xx
14/01/2014 at 17:56
14/01/2014 at 18:04
What a cutie! Sorry to hear you are still in hospital and having to deal with more changes but good that he is making progress. Do you know how much longer he is likely to be in? x
14/01/2014 at 18:08
What an expression!
I'm glad to hear he is doing so well even if there are a few more hurdles to cross before he is home for good. I hope it isn't long now x
No discharge plans yet unfortunately - he has to have a clear 10 days with no episodes of forgetting to breathe. So far we've managed 6! In my head I have middle if February but I have no idea why - there's no reason for it!! Thanks for all your lovely comments xx
14/01/2014 at 18:24
I know it must be frustrating to want him home but he sounds like he's done amazingly well so far you should be very proud. Thank you for updating us, I hope it's not much longer before he can come home
14/01/2014 at 18:29
Such a gorgeous little face. Really happy to see this update, although sorry you're not home yet. Will keep fingers crossed for February for you x
14/01/2014 at 18:39
What a gorgeous picture! I love seeing pics of him on FB, and hearing your updates. I'm sorry he's still not well enough to go home yet but hopefully it will be very soon. Don't forget to look after yourself
14/01/2014 at 18:50
Really hope he is home with you soon. x
Love the expression! Hope things continue to improve.
14/01/2014 at 19:02
Oh just look at his gorgeous little face! I really hope he can come home soon xxxx
14/01/2014 at 19:06
He's such a little cutie! I hope he is able to come home soon and big hugs to you as well xxx
14/01/2014 at 19:21
What a cutie! Hope things keep improving and you have him home soon!
14/01/2014 at 20:57
So lovely to hear from you! He is just gorgeous! And looks like he'll be a right cheeky chappy! That's a pain about being moved, but hopefully it won't be too long before you'll do able to take him home! I hope he continues to get better and you are taking care of yourself too. Xx
14/01/2014 at 21:24
A very cute boy. You know I understand how hard and frustrating it is. You are doing sooooooo well to get through this. The light at the end of that tunnel will soon be blinding you in the face x
14/01/2014 at 22:09
What a lovely picture. It's great news he's getting so much better. I hope you get him home soon x
14/01/2014 at 22:18
What a gorgeous boy! I hope he keeps on getting stronger and you can take him home with you very soon.
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