This post originally appeared at my old blog, www.the-alice.co.uk.
Phew. We are home.
We got back yesterday afternoon and spent the rest of the day all snuggling on the sofa, exhausted after our 5 night stay. My home was a fold-out camp bed next to Elfie’s cot, lumpy and cold. Will stayed with us until 4am the first night in a hard chair next to us, then the next night in a free hospital bed, but was made to go home after then. I’ve had a couple of short hospital stays in the past for minor operations and have slept fine, but I totally underestimated the busyness of a children’s ward at night time. Not only was Elfie having two hourly obs but there were lots of comings and goings, other babies crying and monitors going off left right and centre. One of the first things I did when I got home was hugged my own bed. I missed it so much!
Needless to say I wouldn’t have been anywhere else. There was a toddler in the bed opposite us whose parents left him in hospital on his own at night. His tears broke my heart.
There’s been a lot of coming to terms with Elfie’s medications since we got home. She has two different types of steriods, one once a day and one twice, and a sodium suspension four times a day. We give them all to her orally in a liquid via a syringe – they are all different measurements and it’s pretty terrifying to make sure we’re giving her the correct amount at the correct time. So many millilitres and micrograms… not fun on a brain totally fuzzed by tiredness.
If she falls ill she will also need an inter-muscular injection, which Will and I were trained in. Needless to say I am touching so much wood that we never have to use it – sharp things and I simply do not mix! We also have a blood sugar monitor to use as an indicator for how well she is. Again, I hope our use of this is rare as I hate the thought of pricking her tiny fingers.
The good news is that her feeding is now fantastic. The last couple of weeks her appetite had slowed down dangerously and she was eating only around 500ml in a day. She’s had 900ml today! Her weight was getting further and further from the bottom line of the chart so hopefully she might now even put on enough to get back on the chart. At the last weigh in on Friday our poor little mite had lost weight and was still below 9lb, I’m looking forward to finding out her weight gain this week.
We have an almost-diagnosis, but the hospital are still working on an exact one, and they are unsure of the extent she is affected. She definitely has a problem with her adrenal gland, meaning she is unable to produce an essential chemical our bodies need when we are under physical stress. Babies with her (rare) condition are usually presented to hospital severely dehydrated and with symptoms of low sodium by their 6th week, and I think it’s been our dedication to getting as much milk as possible into her that meant she has stayed well for so long.
The doctors are currently trying out different combinations and quantity of medication to see what works the best, then examining the results of her blood tests. We should have a clearer idea in a fortnight or so of what her condition means, but for now we know that she will be medicated for the rest of her life.
I feel I have so much more to say right now about our situation – I am carrying around a lot of anger, for the health professionals who treated us like neurotic parents and for myself for not pushing harder. Her condition is genetic so I am feeling a lot of emotions about our future children, and should I blame myself for passing this to her? I’m feeling sad that my little girl will have to spend her life dealing with this condition and watching her health closely. And at the same time there is relief, after spending a couple of nights on an oncology ward and meeting some brave parents I know we are the lucky ones that she isn’t more unwell and that we are well-equipped to deal with this and help her through it. But they are all other posts I’m sure will come in the future as we wrap our heads around all this.
For now, I’m exhausted. Thank you for all your wonderful messages, they mean so much.
(Above photo is us having a bit of fun with a bedpan. You’ve got to look on the bright side!!)