Babies with CHD, how many weeks were you induced ?

[Nikki2ol6]

Mummies of babies with congenital heart defects..... how many weeks were you when they induced you?

I've packed hats, socks and mittens for her. An outfit for her just in case. I've put in a stuffed animal and a blanket. We've put nappies in too and cotton wool. I'm going to BF so I've put my pump in and some bottles just in case x

I also want to breastfeed but they said he will most likely be tube fed as he will get too tired from feeding. So I do need to ask abou how that will go x

I do not know if this is any use to anyone, but I had an induction involving two lots of pessaries, a drip that needed to be increased several times, an epidural, episiotomy and forceps. It took three days, so it was a fairly full on affair. I was discharged to allow me to follow my boy to the specialist heart hospital. You may not be stuck recovering in one hospital while your baby is another one.

Good luck to you all.

Where you given a bed at the other hospital and looked after? They have shown us the accomidation there which we can live in while our baby is in hospital as you are not allowed to sleep on the ward he will be on so either way I won't be with him which is very hard to try and take in

I am going to express milk if I can to be fed to her via the tube. My midwife said even if I can only express a tiny amount that this will benefit her loads at the beginning.

I am hoping to stay at Ronald McDonald house at Alder Hey but I don't know if we can because we are not too far from the hospital. About 25 minute drive from home x

Sorry to post again, I just wanted to add a few more positive experiences. I was able to express the while my boy was being tube fed. It took a while for him to feed orally but he went straight from the NG tube to feeding directly from me. He has never had a bottle and he was breast fed until well past his second birthday.

Babies do not really wear clothes in PICU, but we were allowed to put socks, mittens and his own blankets on our boy. A small cuddly toy is also useful. Not only is it a little friend for your baby when you csn not hold him, but it is used to prop up the ventilator tubing.

I wish all of you the very best. I hope everything goes well.

Hello. I know it's scary but a friend of mine had this a while back with her son and he is now a strapping young teen. She gave birth at her local hospital and he was stabilised and transferred to GOSH. She followed as soon as she could. He had the op (coarctation) within a day and was home in 2 weeks. 1st step over - breathe a sigh of relief. After that, he needed to reach 5kg before they would do the second surgery (hole in the heart). That took until he was 9 months old. She was told to feed him expressed milk with added formula to build him up. She wasn't allowed to let him cry as he went blue. Can't remember how long he was in for the 2nd op, but only a few days. Both times it was amazing how fast he recovered. After the second op there were regular check-ups to see how things were going and he was kept on medication, which they were told would be for life. One day, friend went in for a check expecting to be told to come back in 6 months. Instead, she was told he could stop all medication and didn't need to come back. One thing you'll notice having a less mobile baby (no spare oxygen to be physically active) is that things like talking and letter and number recognition will progress quickly instead. Also social interaction.
A last thing to bear in mind. Yes, these are major, serious operations BUT the surgery teams do them all the time. You will be freaking out inside, but they know exactly what they are doing and your baby couldn't be in better hands.

Thank you. I am hoping for the same straight from tube to breast but will have to wait and see. If you don't mind me asking how long was your child in hospital for?x

We only live 7 miles from the heart hospital but are allowed to stay in the accomidation if we want too but then went on to tell me I can't be alone in there for the first week after birth and must have someone with me at all times. The nurse did mention expressing my milk and they will store it and warm it up when needed but there was so much to take in that day x

My boy was in hospital for two months. He had a lot of complications though.I think most babies come out of hospital much sooner. I was able to borrow a big electric breast pump from the hospital which made things easier.

I was allowed to stay in accommodation at the hospital. When we were there you were allowed 24 hour access to your baby while they were in PICU so we could see him whenever we wanted.

The doctors and nurses were completely amazing and I can not for one moment criticise the care that my boy or I received. However, I did have to be quite clear that I did not want him to be given any bottles. It was only by chance that I arrived one morning before the nurse was about to give him a bottle for the first time . She was very surprised when I asked her not to. Once I said what I wanted they were very happy to stick to it though.

Yes they have said we will have 24 hour access to the ward but there is only a plastic chair each side of the bed and it's only two visitors at a time and one must always be a parent but I think they prefer parents only to reduce the risk of infection. It all still seams to unreal at the moment and even though we had a look around the ward and seen very poorly babies I can't imagine in a few weeks that will be my baby in the incubator and me on that chair beside him

I'm Symmplythebest from the above posts.

How did everything turn out for your little ones?

My Lyla had her OHS at 7 days old. We were discharged when she was 20 days old. She was 7.2 at birth and 6.8 at discharge.

Final diagnosis was interrupted aortic arch, large vsd, small asd and a vascular ring which was all repaired by the geniuses at Alder Hey.

On 6 monthly check ups now as Lyla is thriving. At last weeks weigh in she was just over 16lb and she is 5.5 months old.

Hope all of your little ones are doing well too xx