Happy 1 Month Clem

On Saturday, Clem was one month old. Some sort of a celebration seemed appropriate but all we could think of was going out somewhere, and that didn't make much sense if Clem couldn't join us. So we had a regular NICU day, with some nice cuddles and Lena made him a card. 

As they say around here, Clem is well 'in himself', meaning that beyond his diagnosed gut issues, he is otherwise stable and reasonably content. We have however had a couple of setbacks this week, so unfortunately going home doesn't look like happening any time soon. 

Everyone had been hoping he would start to tolerate his breastmilk feeds better by now. But things have unfortunately gone in the other direction, so for the moment he's nil-by-mouth again and they've had to come up with a new plan. 

As you may remember, Clem's bowel had a section that didn't form properly in utero (jejeunal atresia) and was obstructed. They treat about 20 of these a year here so while not rare, it's not exactly common either, and as far as anyone knows, seems to be a completely random vascular event not related to genetics, parental age, environmental exposures, or anything they can pin down. 

In utero, the section upstream from the obstruction became very large and dilated, while the section downstream didn't have any opportunity to practise moving things through, and so was very small and underdeveloped. When they did the original repair, they cut out the 10cm long section that wasn't formed properly, but then had to connect the two parts that were very different sizes. They did some tapering in the original surgery, but we always knew that this may or may not work, and might need a more comprehensive re-sizing surgery down the track. 

They've also had to come up with a new plan for giving Clem the intravenous hydration and nutrition that has been keeping him alive since birth, and will continue to do so until his bowel starts working better. He started with several cannulas, but these are tricky at the best of times with small newborn veins, and Clem's veins seem to be especially small and twisty. He's now been through 10 cannulas and even the different type of line (PICC) he'd had for a few weeks stopped working in the last few days. 

So our next move involves two procedures under general anaesthetic, which will most likely happen today (Monday). Firstly, they will insert another type of IV line (Broviac) that will provide a more long lasting way to keep the IV feeds going. And secondly, they will put in a couple more tubes guided by X-ray. The first of these is another Trans Anastomotic Tube (TAT) that will run via a nostril into his intestines below the original repair site, which will give us another strategy for re-introducing milk feeds. The second is a tube into the dilated section of bowel to help drain that area as needed. And, while I'm not quite sure how this works with only two nostrils, he will most likely have a third tube into his stomach, for venting and for when they can start introducing stomach feeds again. 

In the longer term, we are cautiously hopeful that this plan will work, but also preparing ourselves for another surgery in 2-3 weeks in case it doesn't. 

So in the meantime, we wait. While Clem has only precious and temperamental cannulas, we are still able to cuddle him but reluctant to pass him around too much and risk bumping them, so Lena is getting very frustrated at not being able to have her regular cuddles. However out of her frustration has come an explosion of prolific art making. At first it was lots of very strong scribbly angry drawings, and we still see those outlets from time to time, but there have also emerged some amazing depictions of our family and herself. 

Just when we had finished our stash of meals, two amazing food deliveries arrived this week which thankfully should see us through this next busy period, and for which we are very, very grateful. 

It's comforting, if at times sobering, as we emerge from our daze and start getting to know some of the other parents, both in the Grace NICU, and in Ronald McDonald House. Clem's path has certainly been bumpy, and it can be easy to start feeling sorry for ourselves when other families come for a shorter stay and get to go home with their children. But it really puts things into perspective to realise that we don't have the sickest baby in the room, and that others are facing more complicated or uncertain diagnoses.  At times we wonder how on earth we will keep going like this. But we don't have much choice, and neither does Clem, so somehow we do.