Advice for mum of medically complex baby

[Cocomandarin]

Hi

im just looking for advice (please no scary stories) from parents of baby’s who have been in and out of hospital for various reasons. My baby was born the end of October and we have been in hospital 3 times.

I am really struggling with an anxiety which I think is only made worse by post partum hormones. I feel like I’m developing OCD where I am obsessed with checking my baby’s temperature and constantly paranoid she is getting unwell. I won’t go into what she has, but it is correctable with surgery. Until she’s big enough to get it she’s at high risk for infection. The word sepsis being thrown about continuously (I know for good reason, but not good for parents anxiety) has left me going a bit doolally thinking my baby is close to extreme danger at all times.

im wondering how others have coped with this type of thing, how they’ve managed to support their other children at home whilst you have to be in hospital etc. it’s been so so hard, please don’t tell me anything scary right now because I will spiral. I keep telling myself to get a grip and just be strong for my baby but I am a shell of who I usually am.

It’s so so tough - especially when you’ve got other children ❤️
At the time when we were in and out of hospital a lot with DC2, we were simply in survival mode. Once he was a bit more stable, everything felt easier even though the constant worry was still there.
Our medical team were incredible - DC2 was under the on-going care of a few specialists, but his paediatric dietician in particular was an angel in disguise. She not only supported us with the stuff that was medically relevant, she also went out of her way to point me in the direction of further support and helped me navigate that. Once DC2’s condition was stable and we had a plan in place to manage it long-term, I started seeing a therapist and it was the best thing I ever did.
Having a child with medical issues really does take its toll on your mental health, and it’s ok to ask for help with that ❤️ It took me a while to accept that it was ok - I thought I was being silly, or I was weak for struggling with the stress of it all, but looking back on it now? It’s a miracle that I wasn’t completely broken trying juggle all of it.

One of my children was a toddler when they fell ill with a serious condition causing paralysis and in worst case coma - single parent and 2 other young children at home. My hospital was very good in that they allowed home leave as much as possible - I trained up on NG tubes etc and monitoring of obs - we’d come home in the evening then go back in first thing the following morning for rounds and stay all day again. That went on for several weeks. You very much just go into survival mode - explain in an age appropriate way whats happening to older children and try not to worry about the small things like keeping on top of housework. I used to knit so that would keep me busy in Hospital and I got a cheap kindle for poorly child to keep them entertained in hospital. Take things a day at a time. Don’t be afraid to write down thoughts or questions for the doctors - I found trying to have some control over the process and information flow helped prevent me spiralling too much x