Little steps

Quick update: Clem's recovering well from surgery, understandably sleepy tonight but was alert and looking around this afternoon. The Broviac is working well, but they weren't able to put the tube as far down as they'd hoped, so will find out more tomorrow from the surgeons what the revised plan is. Good news is they saw in a contrast study that his bowel does seem to be working all the way down - as confirmed by another big poo tonight. Yay for poo! Thanks for your thoughts, we are all exhausted and hoping for some more peaceful sleep tonight. 

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. 

Cha Cha?

I had hoped by now to be posting how well everything was going as Clem ramped up his milk feeds, but it so often just doesn't seem to work like you hope it will in NICU. A few steps forward, a few backward, some sideways...

I'm seriously losing track of days here, but sometime in the last week Clem decided to hook his finger in his NG (nasogastric) tube and pull it out. Not the end of the world, but unfortunately it looks like when he did that, it might have dislodged the TAT (trans anastomosis tube) that had been used to gradually start feeds. So instead of trickling into his lower intenstine, the milk was going into the dilated upper part of his bowel above the repair site, and unfortunately his system didn't seem to be tolerating this. 

So after a break from feeds, removing the TAT, and resuming full IV feeding, he has now started very gradually on milk feeds via his (replaced) NG tube into his stomach. This has had mixed success with a few frustrating starts and stops and unfortunately a fair amount of discomfort and unsettledness for Clem as his poor digestive system tries to come online. 

The staff here keep assuring us that with 

'gut babies' this part can be painfully slow, with regular setbacks par for the course, and then one day something just clicks and things start working as they should. Still waiting...

Clem still spends most of his day sleeping, as you would expect from a baby who still isn't due to be born for another week and a half, and has had two major operations already. He is however starting to have a couple more 'quiet alert' times each day, which we are enjoying. Here he is enjoying wearing his first clothes, that some very thoughtful friends created for him, that are not only gorgeous but also NICU-friendly to accommodate his wires and tubes. 

One of the big concerns as parents, beyond Clem's immediate health, is the potential long-term effects of this time hospitalised. I feel so relieved to say he's started doing all the things you'd expect of any 3wk old baby - the newborn drunken rolling eyes are giving way to developing focus on our faces, and he's happily gripping a finger - most often Lena's. We are all tired, missing being home, and longing for the time we can all be together as family, but surviving and still very grateful for the support of family and friends, and that this treatment is available for Clem. 

Time

Time moves differently in NICU. This alternate reality life feels at once very unstructured and yet very busy. It's a full time job just keeping up with surgeons and doctors, pumping, and getting more involved in giving Clem basic care. Add a toddler to the mix and it's almost more than two parents can manage. 

Looking after our own needs, and Lena's,  is complicated by not being able to address most of those needs while we're with Clem. My image of wrapping the second born baby in a carrier and, for at least some of the day, going about family life? Not possible in NICU. The normal, completely expected and valid, adjustment behaviour of the first born, that at home we could let run it's full expression in the safety and privacy of our home and garden? Yeah, not so much. No one wants to see a room full of babies woken up by a fractious pre-schooler. I can't even throw together lunch or a load of washing while chatting with my newborn, let alone sleep when the baby sleeps. And so our family life right now is disjointed and exhausting, without any of the benefits that clever multitasking might bring if we were at home. 

Clem is gradually starting to spend more time awake and therefore also needing more comfort when he gets unsettled which, although still complicated with all the wires and tubes he has attached, can now finally involve more holding him without causing too much more pain. 

We have however settled into somewhat of a daily rhythm. Most days, Mike goes  up for the early NICU shift while I pump and Lena sleeps in. Then Lena and I spend a little time together getting ourselves up, having breakfast etc. before both heading up to see Clem for a little morning family time. Approximately 12 minutes later Lena has had her fill of listening to beeps and pings and looking at a baby she can't cuddle as much as she'd like to. So Mike and I do a weird dance of taking turns taking her out to the courtyard, having a snack, all while trying to both be present for the illusive 'rounds' where updates on Clem are shared between Drs, surgeons etc. These run on some kind of mysterious schedule where it's impossible to predict when they might get to your baby. However they are worth waiting for as they're very informative and give our days some kind of direction and focus, getting the overview of how Clem's doing and a sense of the plan for the day. Everything's day by day here. 

If Clem is settled we often manage a family morning tea/packed lunch in the NICU parents' room, before I pump again, and then Mike and Lena head back to our accommodation and I stay with Clem. The staff aim to avoid any non-essential procedures or disturbances from noon to 3, so I aim for a nice long skin-on-skin cuddle at that time which Clem shows his appreciation of by sleeping almost the entire time in my arms. 

Sometime after that when either my hunger or bladder reach a critical point, I reluctantly detangle myself from baby and wires and tubes and try to resettle him back in his bed. Sometimes he's so drunk on cuddles this is surprisingly easy, whereas other times he's cranky and wants to be put down even less than I want to put him down. While he's awake we do his 4hrly 'cares', which involve changing his nappy, switching his oxygen saturation sensor to the other foot, taking his temperature, cleaning his eyes, and doing his mouthcare. Mouthcare is definitely my favourite as while he's technically still nil-by-mouth, we are able to wipe some fresh breastmilk or precious colostrum that I've saved onto his lips and tongue, which he loves. 

Somewhere in there one of us tries to catch the afternoon dr's rounds, and then, once he's settled, I pump again before heading back to our accommodation for some dinner. 

After dinner we all head up to the NICU to read a bedtime story with Clem, and enjoy a few more moments of family time. If he's unsettled, one of us will stay with him while the other heads back to help Lena get ready for bed. 

While I do get up and pump during the night, it is strange to have a newborn and not be feeding and settling through the night. But somehow it doesn't mean we're getting much more sleep, and I would give anything to be up hourly if it meant our baby could be well and with us all the time. 

...and repeat. It's very Groundhog Day, and there's no day off in sight for any of us, least of all Clem. 

On the positive side, Clem has been started again on very small amounts of breastmilk which are given via a long tube that goes via his left nostril all the way down through his stomach and past the repair in his jejeunal intestines. This way the milk doesn't put any pressure on the healing surgery sites. The aim is to slowly bring him up to full feeds via this tube, at the same time reducing, and then stopping completely, his IV fluids and parenteral nutrition. Once this is achieved, we will start slowly introducing feeds via the tube in his other nostril that just goes to his stomach. This will be the big test of the repair site! And once we know that it works, we can finally start breastfeeding for real. 

It's a long road but at least it seems we're making some progress along it now. We still have no idea when we will be home, but if we escape further complications, it's looking like weeks rather than months. 

Movement..

At the risk of both over-posting and over-sharing, we have some momentous news to share. I will spare you photos (yes, we took a photo) but we are excited to announce that Clem had his first poo. This is a big deal after any surgery, but especially so after bowel surgery as it indicates that his gut is starting to work as it should and, we hope, has no further obstructions. We've never been so excited about a poo!! 

Kindness and gratitude

Lena's first proper cuddle, and our first family photo

In a difficult time, we have so appreciated the support of our friends and family like never before. You know who you are and we are so grateful to every one of you. You have sent, or arrived with, lactation cookies, snacks, home-cooked meals, things for Lena to play with, beads to remind me of our circle of support back home in Orange, specially hand-made clothes for Clem once he can be dressed that will accommodate his wires and tubes, shopping, chocolate, and even a few more of our things from home we didn't get to pack in our hurry to leave. You have arrived understanding that Mike and I weren't feeling very social, but that often Lena is, and willing to take her for a play or an adventure. You have been part of a complex relay to get meals from friends in Orange to us in Westmead. You have offered support back home, bringing in mail and harvesting veggies. You have sent messages of support and connected us to your friends who have been through similar experiences. 

It's still a long recovery for Clem from here, but your support makes it all feel more survivable. 

I thank every one of you from the bottom of my heart. 

Slowly slowly

Clem is slowly recovering from his second surgery. With the leakage at the original repair site, he had significant peritonitis (inflammation of the abdominal membranes) which lead to a slower recovery than after the first surgery, but thankfully his body now seems to be working on healing. 

Today is day 3 after surgery and he really turned a corner. His breathing tube came out early this morning while Mike was up there for the early shift, and by the time Lena and I arrived he was looking much more alert and comfortable. 

I've been having cuddle-withdrawals not being able to hold him since the surgery, due to his pain and the complication of him still being on he ventilator, so it was really, really lovely to be able to hold him again this afternoon. He soon settled into my chest and again, if only I'd had someone to bring me food (and maybe a bedpan) I would happily be there still. 

This evening when we took up our bedtime story he had been weaned off his morphine completely and was resting comfortably. It was a very difficult weekend for us but things seem to be looking up.