Monday, 26 May 2014

Reflections on hospital and home

I have neglected the blog recently; a combination of being somewhat shell-shocked by events, genuinely exhausted from a week in hospital with little sleep, adjusting to life with three small children, and probably a little depression creeping in around the edges. 

Firstly, we have decided to take our summer holidays early as far as Home Ed goes. We are trying to come to terms with what life with a baby with Hirschsprung's Disease will look like (Isaac received an official diagnosis last week), and we are all adjusting to life as a family of five and dealing with the (not unsubstantial) fallout of our hospital stay. Any more right now feels like too much to cope with, and there is so much locally that happens in the school holiday, that it makes sense to have our downtime now, and work harder when other children are having a break!

 So, reflections on hospital....We have an excellent clinical team, and we do trust them, but nevertheless, we are not cut out for hospitals, and hospitals are definitely not cut out for us. We had to explain several time what "we want to be with Isaac for every procedure" meant - yes, it means don't do a heel prick test while I'm in the loo, and yes, it means that we will be by his cot when the consultant "does his rounds", even if the "procedure" is that parents are not supposed to be present. I think actually the staff probably breathed a sigh of relief as well as us when we were told that Isaac could room in with us! The most frustrating situation of all was learning to do the bowel washouts; it appeared for several days that we would have to prolong our stay purely because no-one was available to teach us how to wash Isaac out. The surgical team said that the nurses could easily teach the procedure, but the nurses (understandably) said that they hadn't been trained to teach it, only to perform it, and as the surgical nurses only worked Mon-Fri no-one was available...we had conversations which even as we were having them, reminded me of the John Diamond column: 

" I've just had one of those Californian arguments...the sort where I say I realise it's not your fault, but you must understand I'm very angry and there's no-one around to shout at, and where she says that she appreciates my anger, and she is hearing my shouting, but there is nothing really that she can do."

Isaac is three weeks old today. It feels as though time has slowed down so much - only three weeks and yet his birth seems so far away. He has changed so much, and I feel that we missed out on those newborn days. We didn't miss them; we were with him constantly, but we definitely missed out on the way they should have been. Even through the stress and worry of our hospital stay, I was acutely aware of how much of what we wanted for our family was stripped away. We were separated from the girls, I pumped and pumped while Isaac was nil by mouth and unable to nurse, the hospital wanted to measure his urine output, so we had to put him in disposable nappies instead of the cloth ones I had carefully washed ready for him, and instead of a first bath with us, he was cleaned with an MRSA-busting solution. We were categorically not allowed to carry him anywhere in the hospital; if I wanted to take him anywhere, even to the loo next to our room, I had to put him in a plastic wheelable cot.  They are small things, and yet I am crying to think of them; it still feels like so much of our parental autonomy was stripped away. 

Even away from the hospital, normal life is far away. There is a belief (there is so little information about Hirschsprung's, that nothing is properly evidenced) that some babies with the condition cannot digest breastmilk properly, and Isaac has (following Grace's trend) lost a significant amount of his birthweight, so this week there has been talk of him "needing" a high calorie formula to increase his weight. I am anxious to avoid this, as it carries with it a much greater chance of him contracting necrotising entercolitus, the often fatal condition we have been striving to avoid, but we are currently in a cycle of twice weekly weigh-ins and constant worry about feeding. I feed him whenever he is awake, and try to wake him in the night to feed too. The worry builds in the lead-up to weigh day (tomorrow) and I have found myself pleading to a god I don't really believe in to boost his weight. I have found myself powerless to protect him from the suffering he has already been through (and he still has puncture wounds in every limb and horribly bruised feet - he has suffered), surely I can, at the very least, nourish my baby?

Aside from that, there is the overwhelming daily fear of illness. If he sleeps, I worry that he is excessively sleeping. If he spits up I worry that he is ill. If he feels warm I think perhaps he has a fever, and if his hands and feet are cold I worry that he is not getting enough to eat. If nothing else applies, I worry that my excessive worrying over him will damage him psychologically.

I want to enjoy our last baby. I feel like I am wasting the time we have worrying about him. I haven't even started on how I am too scared to even contemplate him having a future, in the way that we talk about Grace and Jude growing up, and how I have stopped looking at all the Hirschsprung support boards, because of all the photographs of dead children. The babies don't affect me as much as the 9/10/11 year olds; I can't begin to imagine how you live for 10 years with this kind of worry every day over whether your child might just die with so little warning.

1 comment:

  1. Couldnt read and run....massive hugs xxxxx