General Chat

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 .

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

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

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

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!
<3 <3

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

I keep checking for news, these babies always in my thoughts.

Sue x

Special thoughts for both these dear little girls, I hope progress will be made re their feeding problems and breathing problems.

Such a huge worry and heartache for their families.

Lizxx

Healing vibes for Esme and Katie and positive thoughts sent with gentle hugs to both families. xx xx

Still sending positive thoughts to these two dear little babies....and big ((((HUGS)))) to all their familes <3 <3

jude xx

Ongoing thoughts and prayers for two special little babies and big hugs for all their families today. xx xx

Thinking of Katie and Esme and both of their families.

Sending some positive vibes for good health to both little girls. <3 <3 <3

Sending love and positive thoughts to Katie and Esme and their families. <3 <3

I am so sorry that she has had a set back Brenda. Things are so difficult for her poor parents as well.

We are still waiting for the results for latest round of gene tests for Esme. they should be here soon. My daughter has asked if they could do another barium meal on the top of her feeding tube this time to see if they can see if there is any reason for her not swallowing. I thought hey had done that before, but it seems not. The last one she had was just making sure that her food pipe was connected to her stomach. They are saying that they might not be able to do one because she needs to drink the liquid down and of course she won't

In the meantime,she just has to be tube fed, she is fourteen weeks old now, so it is hard work for her parents

Sending very warm gentle hugs to two very precious little baby girls and prayers with positive vibes to strengthen all their families right now. xx xx

Keep strong little Katie and Esme we are all sending our love <3 <3

Still thinking of Katie and Esme and wishing them both well. <3

Ongoing special thoughts for Katie and Esme <3

Lesley x

Oh that's a shame there was a set back but let's hope little Katie will continue to fight back, despite the problems with the hernia as well now.

Poor Daddy to have a birthday while all this is going on, I hope next birthday he can look back and know his little girl is stronger and had her first birthday.

Such a worry for them when finances are tight to add to the difficulties.

Hope little Esme is doing well now and Katie can have a diagnosis soon so she can get the right treatment.

Lizxx

Well....had no news for a day or two...still no diagnosis or new news from abroad....but had this today.
And it's her dads birthday tomorrow and he is only on sick pay from this week so it's extra hard for them.......they have to buy meals in hospital...these are subsidised,but it's still more expensive than cooking at home.


Here is mums message..........

Not 2 good at mo her lung collapsed last night tube came out and they had to try get up again and put her ventilation up higher did xrays ect and she got hernia xx
Belly button.

Do hope they can do something.

Hope Esme is improving..we need all the thoughts we can get x x
<3 <3