General Chat

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

Thinking of Katie<3 and wishing her well <3

Lesley x

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

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

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

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

warm loving thoughts and prayers for both babies and their families.
Keep fighting little girls. xx xx

Caring loving thoughts for both baby girls and their families <3

Lesley x

Such a worrying time for all parents who just want to feed and nurture their baby in the usual way but can't because of the problems.

I do hope both babies will be ok and their problems sorted out soon, so their families can enjoy time with them without constant worries.

Lizxx

Hoping Esme is improving with each day. <3 <3

I hope baby Katie and Esme are improving. Positive vibes to both families. xx

Just had some news about the tests taken when Katie had her operation.
They are really baffled...her lungs are abnormal and they have sent off the details to specialists in America to see if they have ever seen anything like this .

She seems to be stable while she is on the machine..think it's a bipap....but she can't manage on her own.
We're hoping and praying they can find the remedy.

Brenda

Your family must all be physically and emotionally drained. Now they know what is wrong with Katies lungs I pray they will get helpful information from America . Thinking of Katie and family every day and sending love and positive thoughts. <3 <3

How exhausting for all the family the worry must be. I do hope that a solution can be found for little Katie. Thank goodness for the machine that keeps her breathing.

<3 sending love hugs to katie and all the family <3

I hope that the specialists can come up with something Brenda <3

Thinking of Katie and all her family <3

Also thoughts for Esme and her family <3

Lesley x

What a worry, I hope there will be someone in America who knows what Katie has wrong so she can be helped.

What should have been a joyous time has turned into a nightmare but you seem to be a strong family so will support each other through this and hopefully Katie will get stronger and surprise everyone.

Thoughts for Katie and Esme too

Lizxx

This is the latest ..they went to see to things at home as they're moving house and she had to get back as expressing milk...we need all the thoughts and prayers we can get.

Hope Esme is improving.


Ye got bk around 4. Katie ok. It's in her notes that they think they have idea on Wt they think it is but not all matching up that y all been sent America they seem to think wen Katie was inside me something went wrong like down sydrom but she didn't form wrong that way but on her lungs she has small lungs for age with bug cells that aren't like ours at all they said no other baby in England has had her condition they said they unsure Wt to do but its not time to give up on her just yet she may have to have oxygen all life even when she goes home but that Wt they think it is but America may have diffo mind on it xx

My heart goes out to baby Katie and all your family. It's every family's worst nightmare but your little one is a real fighter and I'm sending her all the good vibes I can.