General Chat

Linda....I do hope they can sort out Esmes feeding problem .it is hard for the parents,Im sure they will find the cause soon and the remedy.

Our little one seems to still be stable.they are awaiting results of biopsy thurs or Fri and then perhaps we will know what her problem is.

They are certainly giving the medical profession a puzzling time ,but they will find the answer Im sure.
<3 <3 <3

Thinking of Esme and praying for all her family at such a worrying, stressful time. xx

Hi Linda in HC

What a terrible time your family are going through. I do hope they find out what is causing Esmes problems, it is so worrying for all of you. One of my granddaughters was born with a dairy and soya intolerance. She was very poorly until diagnosed at twelve weeks old. She had neo cate milk and now her baby brother is on the same although he has not been diagnosed with the same thing yet. Little girl is just five years old now and well. Thinking of all the family <3 <3

I am so glad that the news on Katie is better, I hope that she will improve every day, although it is obviously going to be a long haul for everyone

I am just back from spending a long weekend with Esme who is twelve weeks old now. She is awake more often now and likes watching her cot mobile.

She still refuses to drink any milk by mouth, she just cries as soon as they try.She will take a little thickened milk form a spoon, but obviously can't be fed like that. They are going to start weaning her at four months rather than the usual six months. In the meantime all the milk has to go in through the tube. When you say it like that, it sounds easy, but it is a complicated procedure and each feed takes about forty minutes and as she only has three hours from the start of one feed to the start of the next, it is absolutely relentless for her parents.

They are trying all sorts of different combinations of prescription high calorie milks and breast milk to see if they can find something which doesn't cause her so much pain. the latest theory is that she may have a dairy and soya intolerance. so my poor daughter is on a dairy and soya free diet as well. She seemed to be in slightly less pain on the last formula which is already predigested, she is still being sick after most feeds though. The new formula smells awful, she managed to get four out of the five jumpers I had taken with me

Non of the messing about with the milk is doing anything to find the underlying cause for the problem. the geneticists just run more tests all of the time, but it could take years to find the answer and in the mean tmie, there is the ongoing problem of trying to feed her

Thinking of Katie<3 and wishing her well <3

Lesley x

3 little babies needing healing vibes and prayers. Sending positive thoughts for all the families and hoping that tomorrow is better for everyone. xxx

Things much the same...Katie is stable and has had her eyes open a bit.
Still waiting for results of biopsies to find out the cause.
Had the genetics team today asking questions,particularly about the death of my grandsons identical twin who died at 4 months 25 years ago.(cot death)
I think they are being thorough and trying to eliminate all causes.
Still a waiting game...but she is obviously more comfortable and the steroids are helping.

Hope Esme and the one on martynsues post are also improving. <3 <3 <3

Thinking of all the little ones and hoping they are well soon. <3 <3 <3

Hope there is more good news today <3

That's good news Brenda.

Let's hope that all the little ones are progressing.

<3 <3 <3 <3

Mr M.

Come on you girlies, all fight together.

I am pleased the news is better Brenda and hope things continue to improve for little Katie and that Esme is doing well too


Lizxx

Still praying that everyday brings Katie and Esme renewed strength <3

Lesley x

Oh Brenda I got goosebumps reading that. So pleased. Katie seems to be doing well. She has been through so much. Hopefully now she will get stronger with each day. As you say she is a little fighter.xx <3 <3

Sounds like better news to-day Brenda - I still keep looking in and praying for her to get well. <3

This news seems. Better ,received just 20 mins ago

C&pd it...these young ones use text speak so bear with me....

.Good she woke up b4 proba first time and breathing sum on her own machine doing 25 en she did 27 b4 x

Ye betta than b4 she looks a lot healthier in her face x

She is certainly fighting!!

Hope Esme and the baby on Sue's thread are also improving. <3 <3 <3

Hoping and praying that today has been less stressful for you all and little Katie is made much more comfortable. Get well soon precious little one. xxx

Warm thoughts for baby Esme and family too. xxx

Still thinking of Katie and Esme. and their families. Praying for good news for both babies.xx <3 <3

Oh Brenda, what a lot that little girl is going through. I hope she will start to make better progress soon so she doesn't have to have all this intrusive action taken.

Bless her heart, she has has a battle. My thoughts are with you all as you wait for some good news and also with Esme's family, hope she is doing better now


Lizxx

Sending healing prayers and positive vibes for baby Katie and all the family at such a worrying time. Hoping that tomorrow will bring better news. xx

Thinking of little katie and all of your family.xxx <3