The Past Two Years

I am back!  After a two year break to focus on family and work, I am back on the mic to bring you my next NICU adventure!

Our son Cooper was born at 26 weeks in February 2022, and we are right back where it all began in the same NICU, precisely 2 yeas and 4 days since Lara was discharged. 

In that time, we unfortunately lost our dear son Leo at birth at 18 weeks, but we re-grouped, and knew that our story had not been fully written.

So - join me on my next NICU adventure! 

Transcript

Well, hello everyone!  Firstly, my sincere apologies for the near two year gap between episodes. 

I was getting really stuck in to creating episodes, and then my work requirements went through the roof due to COVID, so in between juggling a recently home bound NICU baby and a crazy work schedule, I had no spare time or mental capacity to continue the podcast. 

I had always wanted to get back in to recording episodes over the past few years, but I always found an excuse not to – even with the loss of our second child in 2021 (which is a story for another episode!)  I still couldn’t muster up the time, confidence or courage to get back on the mic. 

But – as fate would have it, we have recently commenced our second NICU journey in February 2022 – so I thought I wanst going to get a better reason than this to get back into it!

As I look back on the last two years - I think everyone can agree that they have been like no-other, and everyone has been impacted by COVID in so many different ways. It has had absolutely devastating impacts on our lives, and those of our loved ones, as well as the economy and way of life.  One of the sad elements for us was that Lara didn’t spend much time with our extended family as they were all stuck down south due to the continued lockdowns. It was almost two years until she saw half of our family in Sydney.

COVID did however, have an interesting aspect to it for our family, in the way that I was forced to work from home for the past two years, which meant that I was able to witness and share in Lara’s developments.   

I was really lucky that I was able to see her and play with her and be a part of her life each and everyday, for the full day, as opposed to having to get up and commute to work, and then commute back and only really have 1-2 hours with her a day.  Due to covid, we were together 24/7.

So, how did Lara go at home over the past two years?

Well, as you mar recall, we brought little Lara home from Hospital after 98 days in the NICU.  She was on 24/7 oxygen for about 4 months, and then night time oxygen for another 2 months I think, then she was in the clear – and we no longer had to plan ahead for our trips to consider how much was left in her tanks, or keep tripping ourselves over with the cords that ran all over our house. The day she came off the oxygen was such a weight off all of our shoulders. 

We were given two large tanks that had enough oxygen for 7 days each, and three little tanks that had enough for 24 hours each. As our home was split level, and Lara’s room was on the top floor, we had one tank upstairs for when she slept, and one downstairs for general house play. These things weighted about 40-50kg each, so lugging them up the stars each week was not fun at all, especially when our unit is on the 3rd floor, and there is no lift! 

The little tanks were not too bad – we had a little back pack that we put them in when we were out and about, or going for walks. It was interesting to see people stare at her (and us) a little bit, as it was not normal to see people let alone an infant out and about with oxygen. 

Most of the time we were good in planning ahead – ensuring that we had enough in the tanks for a little day trip, or a short weekend away.  I thin there was only one time that we were out of the house for the day and realised that we didn’t have enough air left to continue what we were doing so we had to turn around and come home. 

Wenever went away for more than one night, as the large tanks were far too big, and I didn’t want to be driving around with a 50kg dead weight rolling around in the boot.

It wasn’t too bad however during this time, and is was peak covid time in Australia so we were not in the mood to be going out in public that often with her lung disease anyway. 

So, moving on to her development - Every day, every week and every month that she was home, it felt like she was developing in leaps and bounds. Her language was slowly advancing , her first tooth arrived the night before her first birthday and her crawling was slowly leading to stumbling – and then that magical moment of her first steps, which my wife and I will never forget!

She was slowly but surely getting back on track with her growth, and was climbing the charts ever so slightly. Over time, she was fully discharged from all forms of specialist care with flying colours and they were all so impressed with how she was developing – which made us so very excited and proud. 

She loves being outdoors, loved drawing, dancing and is always laughing. She has such an inquisitive mind, and loves making other people laugh.  She has such an amazing personality and every day you can see it developing, and see her developing. 

Strangely enough - One thing that has occurred the most out of anything over the past two years, is the continued comments from people you encounter along the way which say – “oh she is so cute, how old is she” and will say oh she is nearly 2, and their reply is always “oh bless, she is so little”.  Depending on how I am feeling at the time I would either go into he whole back story, or just say “ haha yeah she is a little one” and just walk off. 

People were always so shocked and amazing that a 25 week-er could be so full of life and so bloody loud!  Who knew she had a lung disease! 

We so fortunate with Lara’s growth and development over the years, she never had any complications or issues. She was a champion sleeper, and we were rarely up at night with her past her first birthday. 

She slept in our room for probably the first 11 months, then she had her own room, with a big girl cot, even her own en-suite!

Haha - I still remember vividly, the first night she slept upstairs in her own room. She had only been up there for about 15min when I heard a loud thump – I shot out of bed and raced through the living-room, using the front door as a bump bag I bounced off it and shot up the stairs and barrelled into her room thinking she had some how climbed out of the cot and had fallen on the floor.

As I jumped into her room I was greeted with a very confused Lara, looking at me thinking – “what is you problem mate? I just dropped my bottle!”

I don’t know what came over me, but it was just an instinct that I had to get up there as soon as possible. I picked her up, and gave her a cuddle, but she was the one doing the comforting in the end as my heart was still racing, and she was still confused. At least it was one of those moments that you can look back on and laugh at. 

Over the years we went on a few trips away, went on planes, and went on buses and trains (which she loves at the moment by the way!).  took her to the beach, started swimming lessons, and went to the playground on countless occasions. 

Where ever she goes, and what ever she does, she does it at 100%.  She is so full of life and energy it is hard to keep pace with her on occasion!

We were finally able to put her in to day care at about 20 months old. The specialist strongly advised us that due to her lung disease and being a premmy baby that if we could hold off until as close to her 2nd birthday as possible before putting her into day caret hat it would be for the best. If she could avoid illness, respiratory infections and generally hanging around with other sick kids it would give her the best shot in helping her develop over the critical first two years. 

We toured a number of centres that were in the vicinity of our house, until we settled on the one that she and we liked.  Her centre is amazing, the staff are absolutely brilliant and very helpful and compassionate with her needs. We initially started her in two days a week, then bumped it to three after 2 months, then when Jess’s pregnancy progressed even further to the point where she wasn’t able to manage her at home we put her in to full time day care. 

In the initial stages, the drop offs were gut wrenching for all of us, as we were all so used to being together full time at home. The first day we left her there she lost the plot, and it was really hard to walk away from her as she was screaming out our names. When we arrived for pick-ups, her reaction was like she hadn’t seen us in years and that we a had absolutely deserted her.

But over time, she got used to the drop offs and the pick ups were a happy occasions – and now she loves it there, has a little clique of friends that she commands, and has the staff wrapped around her little finger. 

She managed to be sent home a few times with suspected hand, foot and mouth disease, but was cleared each time. She did unfortunately split her eye open one day falling into a book case.  She was so lucky that it wasn’t a few mm to the left as it would have taken out her eye.  But with a trip to the doctor and some super-glue, she was back running around again. 

In general terms, she is an absolute legend of a kid, a fantastic eater, lengthy sleeper and a funny and bubbly little girl – and we cannot wait to see who she grows up into.