Hi

My 24 week old boy ethan was born 23/10 weighing 765grams. He since lost weight and has managed to get back up to 730grams.

He is very poorly and had a major bleed on lungs when he was 2 days old but recovered. He has had a few smaller bleeds since then but not too bad.

Just back from hospital, had a very tiring few days. Ethan is poorly - but at the mo stable (I hate that word!). His lungs are patchy which means either another small bleed or infection. They are treating him for infection and bleed anyways just in case. His top right part of lung deflated yesterday and overnight his top left also did the same so they are treating that. The result was last night his oxygen levels was up to 85% which is not what we want. Really he should have been off ventilation after the first week but his lungs are too poorly, which is not great. His Oxygen levels are now 60% so he has improved. He is on morphin to keep him quiet as he is a wriggler and to prevent him from fighting the ventilator.
He needs to be given steriods to hopefully improve his lungs however in his tummy scans he has a gas build up on one side of his belly and not the other and they worry that he has blockage in lower belly, so they are moving him to a london hospital early next week so the surgeons can have a look at him. They dont have a surgical team at Luton. They need to make sure his tummy is ok before they steriods as steriods can irritate tummy.
I am just living hour by hour now as we have seen things change very quickly in the past few days. Just hoping and praying that all will be well and cant wait until we get to hold him!
Him being in a london hospital will be easier for me to see him and I am more mobile now, though ofcourse still get tired very very easily. I have been having naps during the day and that has been helping.

Tummy still a bit sore and though it doesnt hurt to lay on my side I do feel pressure on my hips (think where the drains were) so still have to sleep on my back!

Ethan being in london should solve the problem of not being there for the other kids as should be able to go up during the day if need be. I just hope and pray he is strong enough for the journey and for the possible surgery. He really doesnt like being handled at the moment and seems to get really upset if he is moved about too much.

(Thought I should add I live in Southend and baby was transferred to Luton so going backwards and forwards between home and hospital).

Hi there

All you can do is take each day at a time, rest when you can and be with him when you can. I know a few of the mums on the board have had really early ones with problems so i hope they can help guide you.

My friend had twins at 24 weeks and I know that one of them was transfered to London for an op on his tummy. They are a great hospital. Her twins are now 3 and doing really well. When they are this young they don't like to be handled so its nothing unusual.

My thoughts are with you and please don't hesitate in sending lots of messages. Its tough, frustrating and so upsetting but you will all come through this.

Take care

Mel

PS sorry if im no help. Just wanted to let you know that Im listening to you.

Hi

It sounds like your little Ethan is a fighter. They are stronger than we give them credit for. Im a nurse and when the boys were in Southampton I was allowed to read their notes. I had to stop as I remember thinking that adults would never survive what they go through and there are these little scraps of things fighting away.

How are you finding things with the other children. That is so hard as you have to keep going for them. My daughter was 3 when the boys were born and she was very cross with me for weeks as I made our family life stressful. She didnt understand what was going on.

Good luck with London and the steroids.

Donna

Co CL on Prem and Special Care babies board

Hi Nic

Thanks for keeping up updated about you and Ethan, I've been thinking about you.  I hope the transfer goes well, as you say will be so much better that you are closer for popping in during the day.  I'm sure you are exhausted, having a baby is a shock to the system anyway without the added pressure of having a premature baby and all the associated worries.  Try and rest when you can and accept any help you're offered so that you can spend as much time as possible with Ethan.

Lots of love to you all, pop in and let us know how things are going when you can.

Love Karen xx

Karen xx

Cl - Premature & special care babies

 

Hi

Transfer went well, surgeons say he doesnt need op, he does have pulmonary emphysema which is causing the problem with his lungs and they did say it was quite severe, but they would manage it by changing the levels of his ventilation. He does have a small PDA but they arent worried about it. His grade 2 brain bleed seems to of stopped and is now a clot that is disintergrating.

The docs at the London said ofcourse he is very early, very poorly etc and we are still on a roller coaster but all looks ok. They want him to put on weight (he isnt on milk yet though) he weighs 760grams at the min his birth weight was 765grams.

I didnt go up to see him today as I woke up with a migraine. They have a room at the sick childrens trust which I wasnt sure if I was going to use but I think I may this weekend at least. My son is at his fathers this weekend you see.

Speak soon!