Our daughter has been in Hull nicu for 11 weeks now, on tuesday she had 16cm of her colon used to fix her long gap. At present we are walking around a bit dazed still by what our poor little girl is going through. I wondered if anyone could give us any advise on what to expect now and in the future, as we keep getting mixed messages from different people from the hospital.
many Thanks
Andrew

Hi Andrew
I’ve tried to reply to you 5 times since yesterday with no luck- I’ve emailed you instead.

Thank you very much for your support, lavinia seems to be doing ok we just need to get her off the ventelator now and then we can look to her getting home some time. Fingers crossed! x

Hi Andrew,
How is your little girl doing? I had a colon interposition almost 39 years ago, I was a year old. There was a bit of tweaking needed,(that was before the surgery was properly refined)but once I recovered I managed to eat and drink reasonably well. Did your daughter have a dummy or sham feeding? Apparently I found thicker substances easier to swallow than fluids. I believe other parents have found that with their tof children.

There were times when things got stuck and a couple of times I needed to have the oesophagus/colon dilated. Food still takes time to go down as the colon does not have the same muscle wave motion (peristalsys) as the oesophagus. This means that once food reaches the section of colon the food relies on gravity to get to the stomach. A lot of patience is required by everyone. I found, as do others with oesophageal atresia, that food and particularly drink goes down the wrong way from time to time. If possible ask to see a speech therapist that has experience in feeding issues. She/he would hopefully be able to advise and support your daughter’s progress. Take it a day at a time. You will see light at the end of the tunnel.
Please let me know how she is getting on.
Thinking of you.
Take care
Sophie

Ps which day in October was Lavinia born on? I was the 9th Oct.
Very best wishes
Sophie

sophie
Thankyou so much for your reply it just came at the right time when we couldn’t see an end to it all and where wondering if she would ever come home from hospital. Lavinia is doing ok thank you they cannot get her of some form of breathing aid at the moment but I am sure they will its all just bit by bit. Since born Lavinia has been in hospital with a repogal tube in the mouth to get rid of her saliva etc. She did take a dummy quite well but since the operation has had a large ventilator in her mouth upto yesterday, we did try and put a dummy in her mouth but won’t let us near which is understandable, if someone had just had tubes etc down my throat i wouldn’t be that keen either!
Thank you again
Andrew x

Dear Andrew,
It must be a very worrying time for you all. You really are in my thoughts. Would Lavinia tolerate you gently stroking her cheeks (if they’re available)? Please ask anything you need to know (I don’t know everything but I’ll try to find out). Would she like some music to listen to?
when you have time I would love to hear how she is getting on.
Take care
Very best wishes
Sophie

Sophie
thank you again for your support, I will kepp you updated. We can stroke her cheeks and she likes this so will just keep on trying every day.
Many thanks
Andrew

Dear Andrew,
I am glad she likes that. Is Lavinia your first child? Take care and very best wishes to you all.
Sophie

sophie
we also have another little girl who is 2 (today!) so juggling every thing is a bit hard but wouldn’t change her for the world x

Andrew,
I hope she has a very happy birthday.
It must be logistically very difficult. Are your or your wife’s parents able to help out?
Lit a candle for you all yesterday.
Very best wishes
Sophie

Hi Andrew
How’s Lavinia doing- did she have to transfer to Leeds? Thinking of you all and hoping that she’s doing well.
Joanne