Breathing again

Clem is back at the Grace recovering from his surgery, which our surgeons feel went well. They found what they believe was causing his feeding issues and are quietly optimistic that this time things will work better when we recommence feeds once he's over the surgery. A difficult day but we feel like we can now breathe again. Thanks everyone for your thoughts. 

Princess Lena

Today was Lena's 4th birthday. Clearly it's always going to be a massive change in a child's life to go from being the only, to having to share parents with a new sibling. We just had no idea how major an upheaval this time would be for all of us, especially Lena. So much of our life and conversation at the moment revolves completely around Clem's treatment, we did our best to make today all about her. As will be this post, except to share that Clem now has surgery scheduled for tomorrow (Thurs) afternoon. 

Lena's special day included blueberry pancakes for breakfast, several costume changes... 

...lots of lovely presents from various sources (some of which we would perhaps never have chosen for her but that she, of course, loves dearly), dancing, face and nail painting and general hilarity in the Starlight room... 

...Clem joined us for a surprise courtyard party put on by the Grace staff...

...a rolling delivery of extra cake and four-year-old-exuberance to share with the nurses on duty...

...many renditions of happy birthday, including one by the violinist who plays in Clem's ward, while Lena experimented with the effect of the air conditioning vent on helium balloons...

...skype with Grammy and Gramps, lunch and more cake with Grandma and Grandpa, and a bedtime story with Clem. 

Tomorrow will be hard, but today was lovely. Grateful to those who helped make her day fun and special. 

Surgery

After a hopeful week, last night Clem showed signs that his gut was no longer tolerating his milk feeds. We will talk more with our surgical team tomorrow, but it's looking like he will need the next surgery, and it will probably be later this week. Sad things haven't continued to improve, and dreading another surgery day and recovery for the little fella, but at least now we have a plan that we can be more optimistic will work in the long term. 

We've moved!

We have moved! 

Well, Clem's still in the same spot, but Mike, Lena and I have moved into an apartment directly accross the street from Clem's hospital. Accommodation for families near the hospital is at a premium, so a few months back when this all started we put our name on the long wait list. We never thought we'd be here long enough to get our spot. But here we are! We've been very grateful for our room in Ronald McDonald House, but now grateful to have a bigger space of our own. Enjoying simplicity of having our own kitchen, although I think our freezer space is even smaller now, but looking forward to doing some cooking. And sleeping so much better in a queen sized bed, after Lena and I sharing a single for 7 weeks... 

Mike, Lena and I have all been fighting colds, and trying to be vigilant about not sharing them with Clem. You can't see in the photo, but Lena has a smile drawn on her face mask :) 

Clem is doing well. We started increasing his milk feeds again on Thursday, via the tube straight into his intestines, and so far it's going really well. Going really slowly, we're up to 6ml per hour and will go up to 7ml tomorrow. So far he's tolerating really well, and he's been pooing daily which is a great sign. So while we're trying not to get our hopes up too high, things right now are looking good and we have all our fingers and toes crossed that we might avoid further surgery. He's also still loving his attempts at breastfeeding - not sure if he's worked out yet that we steal back whatever milk he gets? But at least we're able to keep going with that and work on all those baby reflexes. 

Lena is excited about her 4th birthday on Wednesday! We will have a party with her friends once we're home. But for now, we have some fun things planned for the day, some by request and some surprises for her. 

Day by Day

The support we have received from our friends and family has been amazing. People keep asking what we need right now. Apart from Clem getting better so we can all go home, there's not much we can think of that we need just at moment. Maybe a day off? Ha ha, no days off in parenting! A day we can all stay home in our pjs, without abandoning Clem? He doesn't get a day off from hospital though, so neither will we, for now. 

The meals we have received have been amazing. Sending out huge gratitude to all those who've provided or offered more meals. However our freezer space is now  full, and our need for meals has actually lessened in the last weeks, so thankyou, but we don't need any more meals just at the moment. Ronald McDonald House is usually self catering, but community groups come in from time to time and put on a dinner for everyone. In the first weeks we were here, there was just one dinner every 1-2 weeks, but lately it's more like 2-3 dinners each week. These are a nice chance to chat with other families, some of whom have been staying here for much longer than us. Although we are considered 'long term', I'm grateful that unlike others, we have some chance of being home in the next weeks/months. 

If you're in Australia watching channel 7 TV today (not my first pick of how to spend a lovely sunny autumn Saturday, but you never know) you may have spotted Lena hamming it up for the camera. She's been filmed a couple of times now for footage to use during today's telethon to raise funds for the new 60 room Ronald McDonald House they plan to build just up the road. Sentimentality and cuteness aside, with only 19 rooms in the current house, we were very lucky to get a spot as many, many families are turned away. Hard as it is to juggle a preschooler and a baby in NICU, this would all be so much harder on everyone if our family were split up at this time. 

Lena enjoying a rest in the 'bunk bed' she's created under Clem's cot

Clem is doing well this week. He is an enthusiastic breastfeeder and has learnt so much in a week and a half of trying. They're still stealing back most of the milk he drinks by aspirating back up his naso-gastric tube, but at least he's able to find comfort and work on his skills. He's still being fed primarily intravenously, with just small amounts of breastmilk continously trickled through a tube into his intestines. At the moment it's just 2ml per hour, but that's been enough for him to poo daily for the last few days (again, hooray for poo!) so if things continue to go well, his milk feeds may increase in the coming days.  

The big question of how much longer we'll be here is still unknown. Either at the end of next week, or early the week after, the surgeons will get together to discuss Clem's case and decide whether to continue the current plan, or do another surgery. We've sort of settled into the complete uncertainty of our current life. Day by day. 

Mothers Day - The Little Things

We chose a realistic Mother's Day wish - to take Clem 'somewhere, anywhere' as a family, and thanks to the wonderful and highly accommodating staff here at the Grace, our little dream was realised. 

Complete with IV pole, mobile monitor and nurse escort, we enjoyed a Mother's Day afternoon tea in the little courtyard that is physically just a hallway away from Clem's bed, yet feels like a whole other world. He saw sky for the first time! Well, he would have, if he hadn't slept peacefully through the whole adventure. 

Very appreciative of our nurse escort. While Clem didn't need her skills, she joyfully played endless fun games with Lena while Mike and I hung out with Clem and ate cake. It's the little things. 

Lena also made my Mother's Day special by using her crafting skills to create two lovely cards, as well as repeatedly throughout the day giving me a hug and saying "happy Mother's Day mummy". Clem, with a little help from his nurses, also made me a card with his footprint on it. 

(Skip this next paragraph if you don't want to read detailed breastfeeding information)

Clem is still technically nil-by-mouth, but we want him to be ready to breastfeed once we know his intestines can tolerate milk. So this week's exciting development is getting the go-ahead from the surgeons to try comfort suckling at an 'empty' breast. While lactating breasts are never truly 'empty', the idea is that I pump first so at least he won't suddenly get a massive amount of milk. Then, I put him in the zone and see what happens. At first he had no idea what to do, so found it all a bit confusing and frustrating. Understandable after so long without the chance to practise, as well as having used a dummy (pacifier) for his comfort sucking needs up til this point. But he gets much closer each day to putting it all together. He has managed to latch a couple of times and even trigger a let-down and drink a little. I was a little worried he'd get too much, but he seems to fall asleep very quickly after his tastes of success. Plus he has tubes into his stomach and jejeunal bowel that are 'aspirated' every four hours, so if he happens to get too much, the nurses will simply suction it back up the tubes. 

Apart from some concern about an infection that had him on antibiotics again, he seems to be recovering well from his surgery last week and all going well, the surgeons are hoping to start small tube feeds again early next week. Fingers crossed things have settled to a point where his digestive system starts to work better this time. 

We're all hanging in there...

  

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.