Wow – it’s been a long time since I posted a Clara specific update. We’ve just been so BUSY! It’s hard to know where to begin!
To move and not to move
It was proposed a little while ago that once Clara’s surgeries were done, we would move to a different ward to start our new care under the Gastro team. The Gastro team will now work with Clara for the foreseeable future. It’s their responsibility to help Clara grow, ensuring her gut and other potentially affected organs like her liver are protected. They’ll also work with us to create a diet plan to (hopefully) wean Clara off tpn over the next few years and on to total oral feeds.
In short: we are to move under the care of Gastro but we get to stay on Tom’s!
Medical beds are in much higher demand, and with our long tpn breaks we’d be blocking a bed for a patient who could be in and out in a day. My other concern was asking Clara, with no spleen, to fight off whatever bugs some patients come in with (often from A&E). So whilst we’ll be there when we ever need to return to hospital, I’m grateful we aren’t asking too much of Clara too soon.
The feeds have increased
I last wrote feeding was to resume on 2ml an hour. We’ve now progressed all the way to 14ml or breastfeeding again!
We are still giving Clara some expressed milk as the early milk has the most good fats and antibodies in, and she needs all of those that she can get. As Clara was unwell the milk was frozen (it can last six months in the freezer), but it’s great to finally put it to use.
At least once a day she’s breastfeeding. We all know she’s getting a lot more than 14ml then but we’re resting her gut, and so far so good.
Putting on weight
(This update is about Clara so will not acknowledge my hospital diet of skipping breakfast, chocolate daily, and eating at 10pm).
Clara is piling on the pounds. So much so, we have reduced her tpn (now PN, but that’s another post) as we can comfortably assume she is absorbing nutrition from the small amount of milk she’s consuming. We know this as her weight chart is equivalent to a rocket launch. We now have a 12lb 7oz baby! At what age does it become appropriate to exercise using a baby as a weight?
Clara is vomiting once a day at the moment, always between 8.30-9.30am. It could be that she now has medication on an empty stomach as she’s sleeping in a bit longer (we don’t wake her to feed at this stage). Or it could just be her routine after a night of rested bowels. I’ve read that short gut kids are prone to daily vomiting so as long we are are prepared to help her when it happens, I’m prepared for it.
Yep, the big important thing. The sign everything has worked. After her operation Clara had dirty nappies hourly. I was slightly worried life would be confined to the changing mat! However, the settled to two hourly, and now are 3-4 hourly with no dirty nappies overnight. Phenomenal for a short gut baby so early! And totally manageable.
The big area of focus now is to prevent her bottom getting sore as her outputs are acidic. I find it much easier to manage this compared with her stoma bag which leaked all the time. Now, if she poos, I change her immediately so her skin can’t deteriorate. Before, with the stoma bag, we never knew if it had seeped onto the skin until the bag fully lifted and leaked, and as a result it ate away at her skin.
We use Ilex, a very strong American bottom cream that is incredibly hard to get hold of. It’s also incredibly strong – you have to coat it with a lot of vaseline after, otherwise the nappy will stick to the Ilex and can remove skin when you go to take it off. Ouch. I’ve now considering shares in Vaseline – I’ve got a bulk order on its way from Amazon as we speak.
I always forget that Clara’s extreme medical issues don’t counteract the ‘normal’ baby stages. Like teething. Clara has already started teething. We’ve got the fist in the mouth, the drool, and the little pearly teeth visible in her gums already.
We’ve invested in teething rings to go in the fridge, a Sophie (does any baby not end up having a Sophie), and a gifted brightly coloured Nuby teething ring. I’ll report back on what seems to work best another time.
I’ll do a separate post on TPN tomorrow, but as a quick reminder this is Clara’s intravenous Nutrition. This is keeping her alive as she’s not currently able to absorb enough nutrition with her short gut to survive. The aim is to get to 12 hours on/12 hours off by the time we go home.
We are now on 8 hours. 8 hours!! Allowing an hour either side for getting to/from the hospital and the plugging in/out procedures, that’s 6 whole hours out in a day! It’s amazing!!
Clara is finally able to enjoy some life at home. This is my maternity leave. I love it!