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.


Sunday, 18 May 2014

Hospital

We had our beautiful baby, Isaac in the evening of Monday 5th May, and by the morning of Wednesday 7th May, he was throwing up bile and had a hugely distended tummy. Terrified, we gave Grace one last cuddle with him, before rushing him to Poole Hospital.




The Children's Ward at Poole were fairly sure that he had a blockage in his bowel, and were worried about it perforating, so they blue-lighted him to Southampton. 

In the ambulance "pod"
He was transfered directly to Pediatric Intensive Care, where he was hooked up to lots of monitors and we were told we couldn't touch or hold him. We ignored them. 


He had to have an X-ray to try to discover what was causing the blockage in his bowel.


Later, the registrar performed a procedure to clear the blockage, and gave him the first of his "bowel washouts". The next day he was transfered (again by ambulance!) to the Neonatal Intensive Care Unit, over the road at the Princess Anne Hospital. 

By this stage, the doctors were suggesting possible causes for the blockage - it could be "just one of those things", it could potentially be cystic fibrosis or it could be Hirschsprung's Disease; a genetic disorder where some of the nerve cells in the bowel fail to grow, making it impossible to pass bowel movements. Bloods were taken to test for Cystic Fibrosis, and a bowel biopsy scheduled to test for Hirschsprung's. Unfortunately, Isaac's clotting factors were too poor to biopsy on the Friday, which was the original plan, so we had to wait for Monday. In the meantime, we were to be taught to do the bowel washouts, in order for us to be able to return home with Isaac. We watched every procedure Isaac went through, but the nursing staff weren't confident to teach us to do the washouts, so we had to wait for the surgical nurse manager to be available. This put our leaving date back too, as Isaac wasn't able to have a washout for 24 hrs after his procedure - and we both had to complete a supervised one before we could leave. We were very lucky, though, that the weekend consultant told us that we could take Isaac over the road to the main hospital, so we weren't completely stuck on NICU, and were able to get a cup of tea!

It was very bleak being at the hospital with the girls being cared for by friends and relatives, but as well as regular visits, we had the most amazing gifts from family, but also from friends and virtual strangers. Emma N came over on the very first night with wonderful practical gifts of food, amazingly soft cloth sanitary pads for me,  chemical-free disposable nappies for Isaac (they needed to monitor his urine output) and warm clothes. She also did loads of washing for us and visited most days - and busted me out towards the end of our stay to visit a friend who lived close to the hospital, so that I could sit and enjoy the sunshine in their garden with my new baby! Abbie, who we know vaguely through Emma, brought us so much wholesome food that we took up most of the communal fridge! Our Home Ed community rallied round, providing lots of fun childcare for the girls, and the most amazing packages both for us and the girls - and a money collection I know they could ill-afford, which meant that we were able to eat well and transport the girls up and down to Southampton as we needed to. Becky kept our house clean and tidy, found all the extras we needed, ferried the girls to various groups and houses and was generally on call whenever we needed her, and Emma F came back from a trip to Cambridge so that the girls could stay over at her house, which meant that I could put them to bed twice during our week long stay. She also kept me company for the two long evenings that Luke went home to be with the girls. 

Our families were equally amazing, providing childcare (even overnight) at the drop of a hat, and money to help us out when we most needed it. We are a very, very lucky family.

Receiving the parcels and cards from our
Home Ed Community

Emma keeping me company

Isaac and Stickman
We are currently on "Home Leave", which means that Isaac still has a cot open for him at the hospital - he hasn't been discharged, but that the staff are confident that he is currently well enough (and we are sufficiently capable of doing his washouts) to be at home. We finally left the hospital on Wednesday morning - a full week after we went in.



Back together again
 
Home

So, that's the bare bones of what happened. I will add thoughts and further details in later posts, but this one is quite long enough!




Isaac David - 05/05/14

Isaac David Griffiss-Williams was born at home, in water, at 6.07pm on Monday 5th May 2014 weighing 9lb 4.5oz. We had a wonderful, peaceful evening having skin-to-skin (Grace stripped off as soon as she arrived home!) and cuddles with the whole family. The girls are thrilled to have a baby brother!








Saturday, 3 May 2014

Productive days

The last couple of days have felt quite productive! Yesterday there was no Home Ed Group (and the back-up Gardening Club we go to was also cancelled), so we had a very hard-working morning baking and gardening. We made Weetabix Cake (sadly doomed, as Jude turned the oven right down without me noticing, and it was unsalvageable), oaty bars, flapjack and a birthday cake for Grandad on Sunday. We also planted out the free wild flower seeds we had sent from BBC's Countryfile, some peas and beans and managed to clear some of the weeds and trim the dead bulbs. I will admit to having bought in the peas and beans this year - I am going for minimal effort gardening!


The ill-fated Weetabix Cake

Free wildflower seeds

Sowing wildflowers in our
 "wildlife patch"

Weeding

Planting out


Grandad's Birthday Cake
Today we were all up rather early, but everyone was in good spirits. There was some chilling on the sofa, but Grace was keen to buy the bits we needed to decorate Grandad's cake, so we were at the packed supermarket fairly early for a Saturday morning!

Chilling

It's never too early to swing on
the handrail in the front garden....
After lunch we went to Queen's Park, which has the benefit of being close by, with free parking! It is a fantastic park; lots of climbing opportunities, and they haven't made it too safe! We like that, but it does mean that there are certain areas that aren't really suitable for Jude yet, especially as, unlike Grace at the same age, she doesn't really have a sense of self-preservation, and will happily throw herself off high points or down holes! Today she got halfway across an aerial cargo net before Luke needed to rescue her....

Needing a little help


"Chatting" with new friends

Grace at the top of a
vertical tunnel

Riding a wooden horse,
pretending it's a motorbike...

When we arrived home, we decorated Grandad's cake, before settling down to a bit of TV before dinner and bed.



Thursday, 1 May 2014

Why would you not.....

....wear pants on your head for breakfast?


Some days it's just best not to ask....

We have spent the day visiting relatives and picking up the last few bits we still need before the new baby arrives - in between playing with the cars a lot and inventing a new game of "who can throw the soft toy as far as the kitchen?" The latter game was one of the wins today; Jude was throwing wooden blocks, and as it was still morning, and I still had a comparatively high level of patience, I was able to redirect her to things that she was allowed to throw. Patience, right now, sadly seems to decrease as my general level of tiredness increases - and I am very, very tired, but working on it. Self-awareness of it has to be a good thing...?