Babies with cardiac problems

[Bambi29]

My daughter was born a month ago in poor condition. At first they thought she had been deprived of oxygen during delivery but turns out she had a narrow artery in her heart and multiple vsds (holes in her heart) she was in neonatal ICU for the first 9 days then she had heart surgery and spent over 3 weeks in ICU as she struggled coming off her ventilator. She got home yesterday and still has her feeding tube in as she only started on oral feeds 5 days ago so is still getting to grips with her bottle. Has anyone else gone through similar? Just wanting to know tips on how to help her feed :)

Hey, congratulations on your baby

She's doing amazing to be home so quick!!

Different operation but we came home at 12 1/2 weeks on a feeding tube and also taking bottles.

We used to feed for a set time - so 10 minutes bottle, 5 minute break, 10 minutes bottle. Anything left over went down the tube.
Are you gravity feeding? Is she tolerating the gravity feed ok?

If she's still glugging at the 10 minute mark obvs extend it so long as she doesn't get too tired or breathless but for us we found that was about his time limit (he was on o2 too)

Yeah it's gravity feeding! At the moment I'm trying the bottle with only a few feeds a day and only for 10mins then the rest goes down the tube. She gets 80mls every 3 hours. She only came home last night and has only been awake for 2 of her feeds! But she managed 30ml then 20ml so really chuffed for her.
It a just quite daunting not knowing anyone who went through similar. Hopefully with a bit time she can ditch the tube but no rush!

Are you on facebook? There's a tube feeding group on there, some of us have been doing it for a while so lots of support and advice. Link here
www.facebook.com/groups/177590912307248/

It is really overwhelming to start with, especially on such a heavy regime. What is your timetable like overnight?

You will adjust, I promise and soon you'll be out doing all the usual baby stuff with all your feed stuff and think nothing of it.

That group is great for support. And mither your ccn for all the help you can get. And congrats on your baby. But look after yourself. You will probably experience delayed shock at some point.

She is fed 3 hourly so night time is 12, 3am then 6am which is hard going to be honest, I'm absolutely done in!
I joined the group suggested :) it's been both great for information and also quite terrifying if I'm honest!
The liaison nurse at the hospital has been in touch as both the health visitor and nurse raised concerns over my mental health. I think they are right, it's all just kind of hitting home now and becoming a bit overwhelming so hoping to get some help sorted out.
Thank you for your replies!

Seek all the help and support you can. You need it xxxx
Can you not do a continuous feed over night on a lower rate or does she have to be bolus fed?

Sorry there's me assuming you have a pump. I hope you do. If not fight for one as they make life so much easier

Sorry. Ignore me. Just saw again you are bolus feeding. They may be reluctant to give you a pump if they want it to be short term. And hopefully it will x

Been there, though we had a pump as our son came home before his OHS.

Can you get hold of Difrax bottles where you are? It's a particular make of bottle, that doesn't create a vacuum when they suck. This was advised to us.

Also, if you continue to struggle, ask the hospital if they can recommend a pre-verbal speech therapist. They are specialised in eat and drinking for young children and they should be able to help you if it remains an issue.

My son was tube fed for over 2 months, had his surgery at 6 weeks. He very quickly improved with drinking after he came home.

We have a pre speech and language therapist but they haven't really suggested much but they are coming out weekly so hopefully they will be a help.
I don't see any improvements so far which is really disheartening to be honest. Hopefully things pick up soon! I will speak to the pre-speech lady next week about those bottles and see if she thinks I should try them!
Thanks :)

You and she are doing so well.
It’s not you - they are concerned over the mental health of every mum who has/had a newborn baby in hospital and quite rightly - what kind of person would you be if you weren’t affected by that. Having a newborn is hard enough, having a critical ill newborn and being in hospital with her possibly one of the worst things anyone can through (short of the alternative). You mustn’t be hard on yourself or think other people cope - they don’t. The parents you see at the hospital ALL really really struggle.
Find someone who helps you and talk to them. If a health visitor is annoying ask them to back off - I found I had enough appointments and medical things to remember and get to - trying to fit in another appointment with a hv was just a burden not a help. I explained that to my hv and promised her I would phone her when I did need her. Ask help from people who you find useful - I found the specialist hospitals and liaison nurses best. Also make sure you have one gp who knows her well so you don’t have to explain all her medical history every time you want to see a gp over a normal illness.

My baby didn’t have structural heart problems but did have heart problems as a newborn. She’s completely recovered now and is fit and happy. We’ve learnt to live with the appointments and extra worry - but I did get my baby back at some stage and get to enjoy the normal aspects of parenting.

It's these bottles: www.amazon.co.uk/Bottles-Difrax-Bottle-Feeding/s?rh=n%3A60192031%2Cp_4%3ADifrax&page=1&tag=mumsnetforum-21&ie=UTF8

Didn't see your second post. You've been in a roller coaster, it'll take time to wrap your head around it. I crashed 2 years after it all happened and had some talking therapy to help, which is really has done.

FWIW, my son is now 3 and happy, healthy and thriving. You will find your normal with your baby, it took us a little while after 6 weeks of hospital. But we got there and so will you.

I agree - it takes at least a year to really process what’s happened and a few years to start to deal with it. I started having counselling when my lo was 18 months old.