General Chat

Still sending positive thoughts for the little ones and their families <3 <3

Sending healing prayers and positive vibes for the baby girls and both families.

I hope that the babies have improved today and both families are given the strength to cope with ongoing challenges ahead. Sending big hugs to everyone today.

hope the babies are making some progress,thinking of them and sending my best wishes and prayers.

Ongoing thoughts and prayers for the two baby girls and both families.

Still thinking of you all xxx

Thinking of both little girls and their families xx

the fact that the little one is pulling out her tubes shows shes fighting Brenda

hope she turns the corner soon x

Well.....yesterday Katie had a CT scan and the way it has been described to me is that the top lobe of the right lung has collapsed and her lungs are described as ...grotty....Just been messaging her mum who is at the hospital.
She was due to have camera down throat but it as been postponed till she has improved a little and her gases better.
They have been told that she will probably be in hospital a couple of months.She is having physiotherapy morning and night.
Feel so sorry for them as they have just got a new house to rent and it needs some decorating and meanwhile have two lots of rent to pay....
Guess great grans do come in a bit useful!!!
Makes you realise what is important in life doesn't it!!
Hope there is good news of Esme.
These little ones are real fighters.
Thanks everyone for your positive thoughts and prayers . <3

Positive thoughts for Katie and Esme and both families right now. xx

Still sending them both my thoughts. What a strain on the parents (and grandparents) though. Must be awful to see them struggling. I know lungs can 'mend' so let's hope that as she gets bigger and stronger this is what happens. <3

Brenda I hope the little ones will soon start show some improvement. Sending positive and healing thoughts to them and my beat wishes to you and your family.

I hope that Katie will improve enough to be able to transfer back to her home hospital which would at least make it easier for your granddaughter.

Esme is much the same, apart from having caught a cold from her sister. That means she isn't sleeping, so neither is my daughter

She is gaining weight now she is on her high calorie milk powder which is mixed with her mums milk. It all has to go down the tube though and she still has awful acid reflux and is sick after every feed.

They are awaiting lots of tests, the first lot of gene tests have just come back showing nothing, but it is like looking for a needle in a haystack. They have just done a urine test for a particularly nasty defect which we are sincerely hoping it won't be as she would need a bone marrow transplant. it will be a month before they get the results of that.

We would like to take them away for a break, but obviously they couldn't get travel insurance for her. even a short break at something like Center Parcs is too far away from the hospital in case she pulls the tube out

Thinking of Katie and Esme and their families. It must be so hard for all of them.
<3 <3

Brenda and LindainHC, thank you for letting us know the latest news. Thinking of you all.

Thinking of both Katie and Esme and hoping that they will soon get better.

Also sending lots of positive thoughts to their families.

What a worrying time for everyone when Katie and Esme clearly are poorly babies.
This isn't how it's meant to be but sending ongoing healing prayers for the babies and distant support for both families. Gentle hugs for Brenda and LindainHC too.

Well,the news is slightly better.
Katie had camera down throat and that is OK.she has been back on the cpap and at e moment is coping.
She had clothes on for the first time yesterday....see avatar.....
She looks a better colour and is putting on weight.
She will be 4 weeks old tomorrow,and Ive just been messaging her mum and she held her for the first time.
Hope Esme is also improving.
Thankyou everyone for your messages and support. X

I am so glad that Katie is improving and that her mum has been able to hold her, Hopefully she will get better everyday

Esme is much the same. Her parents have a meeting with the geneticists tomorrow so we will have to see what they say.

The speech therapist who visits her (I know that sounds odd, but they deal with swallowing problems as well) tried her on a bottle with thickened milk and a special teat. She actually took some of that,so they are going to try once a day. Today she didn't take as much as yesterday, so it isn't going to be the whole answer

Brenda, I am so pleased the news is more positive <3

Linda, have faith in the pediatric consultants please, I hope you have better news soon

Sue x

Brenda, pleased to hear that the news is more positive about Katie. I'm sure her mum was pleased to hold her yesterday. Hope that things will now get better each day for Katie. Still sending you all lots of positive thoughts.

Linda, hope that there will be more positive news tomorrow, when they see the consultant. Thinking of Esme and hoping that she will now start to improve. Sending you and your family lots of positive thoughts.


Sallie.xx