Yet another hospital birthday

Usually when I write the blog I write it when I'm in a good mood because no one really likes a moaner do they? But today I'm writing the blog in a rubbish mood because I want to write down what it feels like on a rubbish day.



Today is Steve's birthday. Having spent our wedding anniversary and my birthday in hospital, was it too much to ask that we could have one day with no drama? Apparently so. The day started great with William giving us the first proper smiles we've seen in ages while Steve opened his presents. We then made it out for a lovely meal with Steve's mum and dad. Then, however, when we went to feed him this afternoon it all started to fall apart a bit. Earlier this morning William coughed up some brown phlegm, but we tried not to worry and thought we'll see how he goes. Then when we aspirated for his feed this afternoon (withdrew stomach contents to check the position of the tube) we got a load of brown liquid which is not good! We called the hospital and as he's currently on their watch list as he's on steroids so they called us in. They don't really know what was wrong but they think the end of the tube has irritated his stomach lining causing it to bleed a bit. They kept us for a couple of hours so we could give him another feed and see if it had cleared which it seemed to. However, they then made us wait another two hours for a prescription for a new medicine which does exactly the same as a medicine he's already on and will be completely pointless. Then before we left we changed William for bed and he proceeded to throw up everywhere all over his baby grow. This now brings his medicine total to six, two given once a day, two given twice a day, one given three times a day, and one given five times a day. They told us when we there that the steroids put William at risk of having a big bleed which thankfully we didn't know before or we might have panicked. We also found out that William will be considered immunosuppressed for three months after finishing the steroids. This means for another three and a half months we have to try and ensure he doesn't come into contact with chicken pox and take him into hospital if he gets a high temperature. We previsouly thought once the steroids finished we were safe.

We are now home and William is in bed and we are finally grabbing some dinner at 9pm. Maybe this isn't the worst day in the history of the world, but right now it feels so unfair that we couldn't have one day to celebrate and forgot about all the rubbish stuff. We don't have the luxury of thinking, 'well it's hard right now but it'll get better', because it won't get better. We can't look forward to William walking or talking or any of those things because he probably won't. Our hope at the moment is that he doesn't forget how to smile for good.

I've heard people before talk about how lonely it can be having a baby, but having a baby like William feels ten times worse. Most baby groups are in the morning, but by the time William has had 2 morning feeds we struggle to leave the house before half ten. If I decide to feed him out at a baby group I need somewhere to sit him upright, a table for all his stuff and I have to concentrate on what I'm doing which doesnt really lend itself to being friendly. William is hard to hold for long periods of time because he has such poor control over his body. Some baby groups have nowhere to put a baby down making it a bit inpractical. Most mums sit talking about things I have no experience of, even little things like getting a baby to sleep are difficult to talk about. People talk about the importance of a bedtime routine so babies recognise when they should sleep but we have no idea if William even has the ability to recognise something in that way, plus his medicines interfere with his sleep so much (mostly in a good way) that we've never had to worry about getting him to sleep. It feels like a lot of people are too afraid to ask why William has a tube coming out of his nose for fear of causing offence and so often don't want to come near you. And the thing is that this is just going to go on. We will always be in the minority and we will rarely find people who have been through what we go through.

I know this is a miserable post but people often comment about how well we are coping and sometimes we don't feel like we do cope. Sometimes it feels like life has got to change because it feels like an emotional rollercoaster that we can't bear for the rest of our lives. I often say to Steve, what does it mean when people say 'you are coping so well'. What is coping? Yes, we still continue to do as many things as we can and most the time we don't cry but some of the time we do and at the moment it feels like too often.

Anyway, I'm not sure what the point of this post is. I just needed to write it. Soon I'll write something nicer and put some nice photos up. Good night x