General Chat

It is lovely that Katie is home, hopefully they can settle down to be a family at last

We spent quite a long time with Esme over Christmas, feeding her is just non stop work and she is still constantly sick. she tries to pull her nose tube out all of the time, she has to go to hospital to have it put back in. My daughter was at A&E at 6.30am on Boxing day.

She was supposed to be having her stomach tube put in on either the 16th or 23rd of january, but it has been put back to the 30th, so I hope it doesn't get put back any more. The stomach tube should make life much easier for all of them and she can have the dreadful nose tube taken out

Good news that Katie is home and her parents are coping really well with support. It has been a long hard road and little Katie is a fighter and a blessing to her family.

Ongoing thoughts and prayers for Katie and also for little Esme and her family too. xx

It is lovely to hear how Katie is doing, which seems to be very well. May it continue. It will be so much easier now the family are in their own home.

Also thinking of Esme and hope she is doing well.

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That's very good news Brenda, and little Katie sounds a determined little girl who is following her family's lead and not giving up. I hope she continues to do as well as she is and the hernia op will go well when it happens.

It will be good for Daddy to get back to work a bit, altho I expect Mummy will be a bit scared and lonely while he is out of the house, but bit by bit they will adjust and at least Daddy has a very good boss who will understand any inconsistencies in attendance. What a kind man he is to have helped the family by keeping the job open and being supportive. It must have helped a lot not to have job worries on top of everything else.

i hope Esme is holding her own and glad your little grandson is fine and doing well.

Special thoughts for both little ones and their families


Lizxx

Thanks Suzanne.
Katie is home without ventilator...community nurses coming in and parents are coping with bolus feeding her.
I saw her in hospital before Christmas and I was away in Guernsey with son and DIL who live there with the grandson who was born a week before Katie.he is now over 7 kilos and very active.
Came back and stayed with Daughter and saw Katie again this last weekend and held her for about a half hour.
She is on lots of meds and very wheezy,but lots better than we ever hoped .they are coping very well and looks as though her daddy will be going back to work soon...his firm have been very good keeping his job for him and will understand if he can only work part time.
At some time she will have to have her hernia sorted,but the next job is getting her to suck.
She does need building up,but the food for prem babies seemed to be too much for her and she was sick,so she's on cow and gate which she is keeping down.

I hope little Esme is still improving..these girls are little fighters.
Thanks everyone for your thoughts and support.

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Brenda

tell Katies parents to keep on going,baby"s do very well on long term ventilation ,and its hardly ever,please keep on going and don't give up.

health authorities find funding that allows baby"s to go home with nursing care coming in daily,katies parents will learn to cope, :-D

Sending more thoughts out to these two little ones and their families. What little fighters they are and the families are so patient and caring, I admire them all. <3 <3

Ongoing thoughts and prayers for Esme and Katie and both their families today xx xx

Thinking of Katie and Esme every day and hope they both get what they need to make them well. xx <3 <3

I suppose they are very susceptible to infections, there are so many around at this time of the year, I hope she will be OK

Linda....these poor little girls are having a hard time aren't they?
Hope they can soon sort out the tube for Esme..sometimes you have to keep on at them to do something don't you?

Katie had another set back yesterday ...she got a viral infection and is now in the ward for infections...I expect her immune system finds it hard to cope...all I can think to say that maybe it will make her more resistant to them in the future.

This morning my daughter told me that she'd put on weight and now 8.15. But just been told that she's not feeding today and down to 8.4. That seems to me a lot to lose in a day..don't know if they got it wrong.

Parents are determined to do what is necessary to look after her..she has fought for 3 months now.....how could you give up??

Thinking of both these little ones who are such fighters



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I hope once they get her home, they will be able to get as much help as possible from the authorities. It is good that they have family around them who can help with their little boy

Esme is now officially developmentally delayed, she isn't putting as much weight on as they would like. She has now been referred for a stomach tube, but the appointment isn't until the end of January. My daughter can't wait until she has one because everyone she speaks to says it made life much easier for them.

They are trying to get her eating by mouth, she had a couple of teaspoons of puréed apple yesterday and liked it, but didn't take as much today.

What brave parents and they have passed their strength to Katie to fight on as best she can. I hope they can get things the way they need for the house to be ready and j. can pass his test and get help with a car etc Life is turning out to be so different from the way they expected yet they have faced the challenges and will go on doing so because Katie is part of the family and they want her with them. I am glad there are lots of family members around who will help out, and maybe next year they can find a local hospice type place that will help too by giving them somewhere to go with Katie if she is able to go out and special carers who can give them a little break now and again to spend quality time with their little lad.

All good wishes to them that things go as well as possible now


Poor little Esme is getting one problem after another, bless her, but I hope she will continue to fight on and start to make her milestones soon. She will give joy in whatever she achieves and will know love around her, as will Katie. Best of luck to Esme's family too

Lizx

Katie the little fighter has her parents special strength. They will need good support from family and friends but I hope baby Katie is allowed home soon so they can all begin to relax from the hospital environment and become a special little family.
Ongoing thoughts and prayers for them and also for baby Esme and family too. XX XX

We had to make that decision 26 years ago . I know every ones situation is different but this young couple are doing the right thing for their family. I admire them so much. It will be very hard and they will need a lot of help. I believe if a child is born and fights for life like Katie has done then she is determined to be here and deserves to be. Her parents sound fantastic and I am sure they will give her a good life .Bless them all and I hope Katie gets home soon. <3 <3 <3 <3

If there is a quality of life then the right decision has been made.

The future is unknown but with the advances in medicine you may well have made a better future for Katie.

Wish you all the very best and have the best Christmas you can.

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Hope Esme is progressing too....... <3

Ann ,I was the same last night...didnt know what to say in my reply.

I will help as much as poss tho Im a long way away...but financially I can contribute a bit.
My daughter and J,s 2 brothers live near and will help out,,,also his sister with 4 girls lives near and has taken their little boy out a bit with them...so there is some family support.I just hope they stay strong. <3

I have nothing but admiration for them Brenda. I hope they can take joy from all the little things that Katie achieves that most parents just take for granted.

xx

OMG Brenda - can't think of the right words here <3 <3 <3 <3 <3 <3

This is the message I had last night.......


not much said....Wt we didn't know all ready they just said we need to make a decision......did we want Katie to go on long term ventilation or let her go xx

Spoke to all teams today they are saying we young and need to ensure we are strong as a couple and need to decide if it will be hurtful for Katie down the line and won't be much life for us due to not being able to go any were especially if j goes in work again ill be trapped in house permanently, we need a car and funding is getting asked for j to start lessons and get passed on his driving.... .house ok as check list was done and they can work round our house so we decided to make a start and got laminating flooring earlier today to start lounge hopefully move in at least Xmas eve would be really nice xx

Me and J said if it means a life for her it worth doing x

Those are a young mothers own words....doesn't it make you put things in perspective?


Hope Esme is doing OK...still thinking of her too. <3 <3