Going home with a heavy heart

Despite mixed feeling about leaving the hospital when the cardiologist originally told me about Jaxons life threatening heart diagnosis (I just heard the words no new mother should ever hear..). After the extra weeks inside with him on oxygen and a continuous feed looking so unwell (Digesting the threat and.. hello bronchitis). I was more than ready to get him home, especially having now had his life changing chromosome diagnosis added to the list (Diagnosis and mixed emotions). I just wanted us to be comfortable. I wanted to be able to cuddle him in my double bed instead of this single hospital camper bed. I wanted to be able to cook food I liked – it had got to the point I didn’t even order hospital food anymore, I couldn’t stand the site of it. I wanted to put him in his moses basket that he’d only slept in a dozen nights in his 3 months. I wanted to take him outside in his pushchair that had been sat in the corner for 4 weeks whilst he’d been stuck staring at the four walls. They kept talking about his development being delayed and I couldn’t quieten the voice in my head screaming that he needed to be out of the hospital to develop.

We had done the life support training before his bronchitis. We had done his vaccines after his bronchitis. It was just the overall discharge coming together now which included waiting for the health visitor to come and go through the CONI scheme with us. I had never heard of this before but the impression I got was that it was just some extra support for those with children with life-threatening illnesses. That’s not quite what it was. The lady that came to see me explained I don’t quite fit into the scheme but they believed it might help me feel more comfortable taking him home.

The CONI scheme is created for and aimed at families who have lost a child before to cot death, and now have a new baby. It stands for Care of Next Infant and was set up by The Lullaby Trust whose vision is to ‘stop all unexpected deaths of babies and young children’ (find out more about the CONI Scheme here). It is a comfort blanket. They give you a sleep apnoea device which is a little box that alarms if your baby stops breathing (there is a short video showing you this device briefly at the bottom of the page, if you listen you can hear I have it on setting in which it makes small beeping noises to let me know it’s on). It doesn’t save your baby, it doesn’t perform resuscitation or call an ambulance but it would alert you that your baby needed attention. When I say it is a comfort blanket, what I mean is that it allows you to sleep, knowing they’re breathing and if they stop it will alarm and wake you. In the pack was also a symptoms booklet, wall weight chart and other leaflets providing information on safer sleep for babies and a baby check booklet. The baby check booklet I can imagine would be a useful tool for any mum, especially the worriers, because it goes through 19 basic checks and you add up the score and it gives you advise based on the score. Useful for any mum except me though. Because Jaxon would constantly score telling me he’s seriously ill and to take him to a doctor straight away, based on his normal.

I don’t know what I expected, it felt very surreal. The not knowing if I would need this or if anything is going to happen was driving me insane, I didn’t know what to feel. Here’s a woman giving me a machine that will alarm if my baby stops breathing because unlike the parents this scheme is created for who need comfort and reassurance, Jaxon is actually at high risk of needing resuscitation. After his 1p36 diagnosis and the whole “phew, he’s not got a progressive disease that’s going to take his life before his first birthday” I’m reminded that his heart still may fail any moment and no one could change that.

But we’re going home!

Thank you for reading.

I’m happy to answer any questions you may have about anything written in this blog post. If you think others could benefit from reading any of my reality then I am happy for you to share it with them – you never know who they could help or how.

Please comment with your thoughts and opinions reading this. Your feedback is what keeps me posting and writing is proving to be a helpful therapy for me right now. A therapy I wouldn’t be indulging in without your interest. 

If this blog has left you a little saddened, head over to my positive vibes section and read 6 Quotes To Make You Feel Better On Bad Days 🙂

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