General Chat

I hope that Katie is holding her own

Esme is much the same, except she is very sick after every feed. They have decided that they don't expect any change in her feeding over the next three months or so. My daughter would like a stomach tube instead of the nose tube. All the research they have done shows that all the parents of babies who have changed to a stomach tube wish they had done it earlier.
It seems that Esme is not a priority though as she is managing to gain some weight. If her weight gain was under the twenty fifth percentile, she could have it done sooner. Hers is between twenty five and fifty. She has an appointment in three months to reassess it. In the meantime she is trying to pull the nose tube out, my daughter has had to stitch mitts onto her baby grows to try and stop her

Well,not reported for a few days...it's been up and down .
Nearly lost her a couple of nights ago,now she moves around it disturbs the tubes to her lungs so they have to keep her sedated.
They are still waiting for research reports from America so when they had meeting didn't find out anything.
She seems to have had a bit of a cold as well..probably as her little brother had a cold and although mum didnt have one ,could have carried it in.
She now weighs 6lb7oz which is almost 2 lbs heavier than her birth weight.
Not heard tonight,but spoke this morning.

See Esme is also having trouble with her tubes,don't think Katie has trouble with feeding tube,it's the one to her lungs and am given to understand that it's not the one on the outside,,,may be wrong....If I hear more tonight ,will add.

Both little girls are really strong and fighting...bless them both!
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I am sorry to hear that she is not doing so well Brenda, but at least she is gaining weight which is a positive thing

Yet more worries and ongoing stress for the families of Esme and Katie, but they are both little fighters. My thoughts and prayers are continuing daily for everyone. xx xx

Still thinking of Katie and Esme <3 <3 <3

Just had this.11.40pm from grandson,,,her dad.


Yes she's been alright today, had a Lil episode this afternoon but she's ok nicely settled now just got back from her .

Special thoughts continue for Katie and Esme <3 <3 <3

Lesley x

Still thinking of two special little girls Katie and Esme and sending lots of positive thoughts and prayers to both of them and their families.

Love, Sallie.xx

How silly that Esme can't have a stomach tube so she can have her hands free and enjoy touching things etc. If it would benefit her I can't see why the doctors won't do it. Stupid regulations I suppose

Katie certainly puts up a fight to survive and I hope she will continue to do so and that the results from America come through soon.

Bless them both,


Lizxx

Katie <3 & Esme <3

Gentle hugs for both special babies and prayers to help strengthen their families. X X

Been away for a couple of days. Sorry to hear about Katie not doing well a few days ago and hope she is settled not. Thinking of all her family at such a difficult and worrying time.

Also thinking of Esme and her family and hope she gets to have the feeding tube her mum wants for her. I think she should be able to have it done. It will take away the worry of Esme pulling at her nose tube. She is at the age of getting hold of things and pulling on them.

Bless both of the little babies and their parents and family. <3 <3

Poor little Katie has now got flu...it's not a cold as they sent sample away..they've been told its not too dangerous a one...sent pics and her eyes are red and face swollen.....
Need all the prayers we can get for this brave little one.

Aww Brenda that poor little baby. My heart goes out to you all. I do hope that Katie can have medication to help with the flu. She is obviously a fighter as she has been through so much. I pray she will overcome all she is going through and then be able to live a healthy life with her family. I send my love and prayers. <3 <3

Oh poor little darling. My prayers are with her and the family tonight. Keep fighting little lady, God Bless You. <3

Thoughts and prayers for little Esme too <3

Oh, poor little baby girl, just one thing after another, bless her. Sending positive thoughts and prayers to Katie and all her family. <3 <3

Also sending positive thoughts and prayers to baby Esme and her family. <3 <3

Love, Sallie.xx

Well.....there has bed a big meeting with the doctors today and they say it is definitelyPIG....see website previously.........
She will be in hospital on ventilator for about 12-18 months,then they are going to check out the house to see if it can be adapted to have bed and equipment downstairs.
There is talk of eventually having a tracheotomy instead of tube up nose.

Parents have some big decisions to make...as grandson can't go to his present work from the hospital,and her little brother will have to live in the hotel,apart from going to his grans from time to time.

Will post if I hear more.

Hope there is some good news about Esme and her feeding. <3 <3

Hi Brenda.
I would think that it is good to finally have a diagnoses for Katie. Having said that, it is going to be so hard for all of them. It is draining just going to hospital and having to juggle family life, travelling and staying away from home. We had to do it years ago.
I do hope the family get some help and grandson finds a way around work. As you say some big decisions to be made. I am thinking of all the family.xx

Still thinking of Esme and family xx

It's good that there is at last a definite diagnosis but to have to live away from home for so long will be very difficult and costly for the family, I do hope they can get things sorted out without too much hardship and that little one can do well in the hospital. If the house can be successfully altered to accomodate Katie's needs in the future it will be better but a long road ahead to that situation.

My best wishes to them all that things go as smoothly as possible.

Lizx


Good wishes to little Esme too

Thinking of both families and wishing them well.

Although it seems that Katie will have a (very) long stay in hospital, at least now the medics feel confident enough to do some forward planning.

Perhaps further down the line she will be able to transfer to a hospital nearer home.
I hope that Katie's family can draw strength from each other and will be able to sort out a routine that suits them all.

Thoughts also to Esme, I hope that whichever feeding tube she is given, it will be the one that is best for her in the long run.

Warm wishes and healing vibrations and sent to both families.



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