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The hospital roofline from our Westmead apartment balcony

Clem has stayed very well since being discharged from hospital, so after packing up and saying our thankyous and goodbyes, we finally headed home to Orange as a family on Monday. 

Lovely to be back in our own home again, but a little strange and disorienting after three unexpected months away. Our calendars were still on March, clocks on summer time. Half expected to find vines growing through the rooms ala Chernobyl. Big thanks to friends who had been over to our place and taken care of the worst of the science experiments! 

One big surprise was how well kept our garden was. We knew that a few of our beautiful friends had been playing garden pixies, watering and keeping the grass mowed, but apparently they had also cleared out the remnants of our summer crops and planted us some winter crops. Amazing! Not sure when I'll get time out there again, so feeling such gratitude and love to all those involved. 

We managed just a few days of family time before Mike went back to work this weekend. The early-days-newborn-love-bubble we would have liked to replicate has been a little overshadowed by sorting through three months of life-stuff, and organising our next round of follow up appointments. And remembering how to enjoy 'normal' life again, with conversations that don't revolve around diagnoses and treatments and hospital life. 

All going well and barring further complications, Clem is unlikely to need further surgeries or treatments, and for this we are very grateful. At a healthy 5.2kg, Clem is a long way from the tiny 'premature' infant you might imagine. Still cautious around colds and winter bugs as we have no desire to end up back in hospital anytime soon, however hoping now that he is fully breastfed his immune system will strengthen. His appointments now focus more on routine follow ups and his continuing development. Right now everything looks good, but they like to keep a close eye as lengthy hospitalisation at an early age can impact development. It's not uncommon for delays in meeting milestones, especially physically, at the 12 month mark, but with appropriate intervention, most catch up by 3 years. We will have a trip back to see our doctors at Westmead next month, but thankfully we should be able to do most of his other appointments locally. 

I had a frenzy of nesting in the days before we left (did my body know something?). All the newborn size clothes that I had so lovingly washed and sorted and folded into drawers now need to be bagged up again, unworn by Clem. Sad to have missed those early days at home. Grateful those clothes were hand-me-downs from kind friends, and keen to pass them on to their next family. If anyone local-ish needs boyish and neutral 0000s and 000s, please let me know. 

Looking forward to catching up with friends and introducing Clem soon! We're not up for overnight houseguests just yet, and still kinda in household chaos and newborn nap-land, but if you text first to check, there's a good chance the kettle will be on, and that Lena will be up for a play. You might even catch a smile from the little fella himself.

Fast Forward

This week feels like everything has been switched to fast forward. As well as walks around the hospital, our dr approved gate-passes so Clem could join us in the evenings while we had dinner at the appartment. 

Clem tolerated the switchover from continuous intestinal-tube feeds to continuos stomach-tube feeds just fine, so the next step was bolus feeds (another of the lovely words we've recently added to our vocabulary, from the Greek bōlus meaning 'clod', or a rounded mass of something, in this case, breastmilk)

To start, the surgeons really wanted to know exactly how much of a bolus he was getting, and since there's unfortunately no gauge on my breasts, this meant either tube or bottle feeds of expressed milk. Also, Clem kinda forgot how to latch at the breast since his third surgery.  We discussed that while getting to full breastfeeds was our ultimate goal, staying in hospital til this was achieved seemed unnecessary given the lactation support I can access from home as needed. So, keen on getting us released from hospital as soon as possible, we went with bottles as Clem does enjoy his milk by mouth, and it was an option we could easily go home with. 

On Monday, he had hourly 29ml bottles of expressed milk. But yes, he was still hungry. On Tuesday he had his Hickman central IV line removed in a brief procedure in the operating theatre, so was extra hungry as he had to fast part of the day. On Wednesday he had 2 hourly bottles of 60 ml. Wednesday night the pump went off and Mike fed him bottles on demand overnight, and he proved himself quite capable of knowing when he was hungry and letting his dad know about it. Thursday it was 3 hourly/on demand 90ml bottles to be sure his gut could tolerate this amount. 

And on Friday, our surgeons were confident his gut had proved itself, and hospital care was no longer required. Both his precious feeding tubes were finally removed, and he was discharged from hospital to our accommodation accross the street. 

We spent a (mostly) lovely afternoon not having to be anywhere. Mike is back in Orange for a few shifts at work again, but thankfully Grandma has been able to come help again. 

Now feeling very glad we didn't wait around hospital til we'd established full breastfeeding! Within a couple of hours of being in the appartment, after a proper bath and a good yell and a lie down, he suddenly remembered how to latch and has been feeding at the breast ever since. 

We have some wrapping up and packing up to do, but all going well, we will be all the way home to Orange within the week. Once again, massive gratitude to everyone who has been so supportive over the last three months. 

There was a moment yesterday when both my children were screaming full volume and there was a strong realisation of all the new adjustments to come. But somewhere in there was the start of our new normal family life, screams and all. And a hard earned nap. 

Ward life

We have a new freedom now on the wards. Lovely to be able to pop Clem in the Ergo and take him for walks. I wasn't sure how he'd like being worn after so long in bed, but he seems to really enjoy snuggling in and usually goes straight to sleep. Still longing for the day we can be at home together as a family, but for now at least we can take some whole-family adventures around the hospital. 

We are adjusting to our new daily rhythm. Mike and I take turns to sleep at the hospital in Clem's room. After an awful night each on a broken fold-out chair, I plead my case just politely and pathetically enough that someone found a proper fold-up bed they kept stashed away for long-termers like us. The surgical ward tends to have a much higher turnover of patients than NICU, we've already had three different neighbours in a week, but thankfully there are only two beds in our room (some are four or six) and we have the window side, which gives us just a little visual privacy, and a place to gaze out over the verandah to the gardens, playground and sky.  Lena is coping with the new pattern better than we all thought, and enjoying having special Mummy nights and Daddy nights. And even though the hospital-sleeping parent tends to not get great sleep, it's been lovely for both of us to spend more time with Clem. The morning smiles he reserves for the parent who spent the night are truly special.

On the wards, more visitors are allowed so more fun things tend to come around to us as well. Clem met his first dog today! 

The delta therapy dogs come around weekly. He seemed quite intrigued by the feeling of soft dog hair between his toes, and of course Lena, Mike and I enjoyed lots of pats. 

Meals for parents staying are not organised by the hospital, so we also take turns organising food to bring in. A little tricky sometimes but we're making it work. Kind friends who have been offering food: if anyone's passing by soon and feels like dropping us a meal or snacks, we won't say no. We have really limited food preparation facilities on the ward, so can only really use meals that are individual portions, either eaten cold or microwaveable, and can be eaten as-is from the container. And not too many at once please, as all going well, we may not be here much longer! 

Mike had a trip back to Orange this week for one shift at work, but thankfully grandma was available to come and help out. 

Clem is doing really well. Late last week he went up to full milk feeds via the tube to his intestines. This meant he could come off the IV feeds completely which was very exciting for us and great for his health, as long term IV feeding can cause other health issues. So he's now an exclusively breast-milk fed baby. 

The next step was introducing feeds into his stomach. This started Monday and so far seems to be going really well. During the nightime the stomach feeding is a continuous trickle via tube, but during the day we have been dripping the small amounts into his mouth which he is really enjoying. Still nervous about testing the new repair site, and have everything crossed this time it will work, but so far so good. 

Clem's Turn to Move

Clem was moved to a ward yesterday. We knew this was a possibility but thought we'd have more than a few hours notice! This is one step closer to home, and a great sign of our medical team's confidence in his improving condition. But we're still a bit shocked to be suddenly leaving the strangely familiar comfort zone bubble of the NICU, and getting our heads around what our new daily rhythm will look like. 

In NICU there wasn't space for a parent to sleep bedside. We were allowed to be there at anytime, but encouraged to take care of ourselves, go back to our accommodation and get whatever sleep, albeit fitful, we could. I thank those who encouraged this as we couldn't have survived 68 days in NICU otherwise. At first it was truly heartbreaking to leave him each night, and I cried many tears walking away. I can't say it ever became easy, but we did start to build trust that his caregivers would either call us or care for him themselves when possible if he needed cuddles during the night. All choices given, I wouldn't have opted to have strangers look after my newborn each night for the first 10 weeks of his life. But with Clem's condition we didn't have many choices at all, so given the circumstances, it was lovely to return to a nurse holding, rocking, reading him a book. 

Usually, we were told, babies released from the Grace NICU have one or two nights of 'rooming in' for parents to get confident with the care of their child before heading home. This is what we had prepared ourselves and Lena for. 

Life on the wards feels like we've unexpectedly landed on a different planet. Not only is there a space for a parent to stay, there's the expectation that a parent will be there all the time. Mike and I are both really looking forward to more time with Clem, but it will be a big upheaval and adjustment for us, especially Lena. Things are generally a bit less restricted on the wards, but we still need to figure out how things will work for visitors, and also gate passes for Clem to maybe get to go on some walks. 

Mike is spending the first night there tonight. He's pulled out the odd little single sofa bed amid beeps and pings, hourly nurse visits, toilets down the hall, all in a shared room with all the other beeps, pings and visits just on the other side of the curtain. 

It's my turn to stay tomorrow night. I'm so looking forward to finally having some more connection with my boy. I'm also aware that it will be a difficult separation for Lena. I know any parent of more than one child will feel torn at times but parenting both under the same roof has to be slightly easier on everyone. Lena is showing the strain, and keeps trying to re-negotiate and suggest ways we could all stay together. Her latest plan is that if she gets sick, she will be admitted and can have the bed beside Clem and we will have a family room. I think the only one getting much sleep tonight is Clem!

 

He recently reached the milestone of getting more than half his nutrition from breastmilk. The IV feeding (TPN) is being slowly reduced as his milk feeds are increased, and if things keep going well, he will finally be a fully breastmilk-fed baby by the weekend. This is all still via tube to the lower part of his intestines, below the new surgical join. 

The next step is to start trickling tube feeds to his stomach. After not having been used, it may take a while for the stomach to come online, so this will be a very gradual process. If that works we move on to larger stomach tube feeds, then measured oral feeds, and then finally feeds at the breast. So we've still got a ways to go before we're home. 

We have finally got the go ahead to start 'dry' breastfeeds again post surgery. Just one a day for a limited session at the moment, but once he remembers what to do again, i think it will help settle him and start preparing for life at home. 

Lena has been enjoying regular visits from her Grandma, but might now enjoy some more adventures and visits from playmates again soon? 

Moving in the right direction

So I've realised that by my last post it might sound like we're having visitors to meet Clem at the moment. We miss our friends dearly and can't wait til Clem's well enough so we can introduce you. However at this time his ward (the Grace Centre for Newborn Care) is only open to very limited visitors outside immediate family. No children are allowed in except siblings. So while we (especially Lena) would love to see friends, it's tricky as having visitors means we have to leave Clem. In the coming weeks it's possible he will be transferred to a different ward, and at that time we will let you know if we are in a position to receive more visitors. 

As of today he is breathing completely unassisted again, and just has some coughing from time to time, so seems to be over the worst of his bug. So far he is tolerating his feeds and pooing regularly, all good signs. We are cautious about getting too excited as we've been in this spot a couple of times before and watched things go pear shaped. But for now things are looking to be moving in the right direction. 

A week later

Lena coping with her week with a little evening umbrella dancing

It's a week after surgery and Clem seems to be recovering, but it has been a difficult and frustrating week for us all. The day after his surgery he had lots of congestion in his nose and chest, which turned out to be a type of paraflu. So he, and we when we visit, have spent the week in an isolation room. Hoping it would feel like a private suite. Instead we found it a strange, disconnected, place where doctors rounds happen outside the door out of earshot, and conversations happen through facemasks. 

Isolation making us all a bit loopy(er)

After each surgery Clem's always needed a day or two on the ventilator, but this virus has really extended that time. They finally removed the breathing tube yesterday and although he's looking and sounding much better, he is still receiving a bit of oxygen support at this time. More tubes and wires, but at least we can hold him again now. 

We don't know where exactly he picked up the bug - could have been from us, or someone else, but after seeing him struggling to breathe, please don't be offended if we ask to avoid visits unless everyone is well, especially while he hasn't got all the immune benefits of being fully breastfed on his side. 

In the last days he has been able to resume small amounts of milk feeds via
the tube to his intestines, downstream from his new repair. Time will tell if it's going to be more successful this time, but the surgeons are optimistic. And we have had two post-surgery poos already! Appreciating any positive signs. 

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...