In my classroom I would always have well-being lessons to try and encourage students to understand and start showing resilience. I would spend countless lessons trying to help them brainstorm, understand and break down situations; and most importantly understanding what it actually means to be resilient! The crazy thing is though; until this journey I don’t think I even knew.
Resilience isn’t necessary something that needs to be taught. Instead, it’s something that needs consistent practise. However on the rare occasion a child can be born with more resilience than most adults; and one of these rare children is Matilda!
Well here we are, more than 100 days in. 100 times stronger, 100 times more diligent and 100 times more in love with our girl!
On the 27th of February Matilda reached the huge milestone of fighting in NCCU for 100 days. Our little family have had a crazy few weeks since my last post. I have felt an overwhelming sense of support from people I hadn’t connected with in years who are following our story. People who are now a part of our little village of people; fighting and encouraging our little girl!
Since our last post, Matilda has grown so much and is now 4kgs. That’s almost 4x her birth weight. She was moved from the Cardiac Surgical rooms and transferred to special care. This was daunting for Jake and I as we were leaving our familiar safe zone again, our area that we’d been in for 10 weeks. However, with mixed emotions, we knew it was such a huge step closer to going home. At this point Rockhampton hospital had been contacted and we were waiting on travel and a bed. Each time we got close to going home, we decided not to tell anyone just in case things fell through.
Luckily we didn’t.
In the days waiting for the transfer Matilda’s strider became significantly worse. I requested an ENT review sooner then planned. From this, they did another bedside scope which showed her Laryngomalacia had become significantly worse. This meant that they needed to operate sooner then originally thought. On this same day I became agitated - I knew she wasn’t okay, that something was off with her, and my concerns led our paediatrician to review. Matilda was put back onto high flow as she was having difficulty clearing C02 which progressed into working extremely hard to breathe... Again. Because of this, we were moved back up to card surg. From there, a surgery date was set and we had to sit tight until theatre.
Matilda went in for her surgery on the 21st Feb. Two surgeries in under three months of age. Our BIGGEST fear was that she would need to be intubated for a period of time after. Well, it was more than a fear - it was a legitimate horror. Dread. Because Matilda was intubated for so long before (5.5 weeks) it has remained in the back of our minds the horror of this; and what if she ended up back there and the machine had to breathe for her? I regret going in to see Matilda straight after her surgery as she remained intubated. As soon as I saw her in that state again it took me straight back to before. But our resilient girl soon let the nurses know she wanted the tube gone 40 minutes after (for anyone who isn’t sure about this intubation process, this simply meant she wanted to breathe on her own and not have the machine do it for her). She recovered so well from the surgery and remained on high flow for a week after. Her feeding improved drastically and each day she became more alert.
Each day in NCCU started to drag out. I knew this could only mean one of two things: we had been there too long, or leaving was approaching. Now I realise it was a combination of both. During this follow up time I continued “trying” to breast feed; something I wanted us to have so badly. Unfortunately Matilda struggled with this, so we began using bottles. At this point my milk supply had almost completely dropped off due to stress.
Can I tell you, this was one of the most disheartening things for me. As great as it was (everyone told me) that I could pump for over 100 days and provide her with breast milk that entire time, it is another thing I am now grieving. Don’t get me wrong, I am unbelievably thankful I was able to provide for her through the tough times... However, I now feel so hurt that this was/is another thing I didn’t get to experience with Matilda. And that hurts. However at the end of the day she copes better with a bottle, drinking formula and gaining weight. What else could I ask for? The scenarios we were facing now were different to before but still as frightening.
On the 25th of February Matilda yet again showed us her resilience and had her feeding tube removed.
Our paediatrician began to arrange our transport back to Rockhampton and the prospect of going home was right in front of us. However each time we didn’t get our hopes up, as those who know NCCU; things can change in the blink of an eye. And that they did.
Our paediatrician was reluctant to send Matilda home with her strider the way it was and prepared us to stay in Brisbane for another 3 months living in our accommodation with Matilda. Disheartened at first, I soon snapped myself out of it as I knew there were families right next to us that would do anything to even get out of there.
We celebrated Matilda’s 100 day birthday with some of the greatest people we know, and prepared for “rooming in.” Rooming in gives families that have been in NCCU the opportunity to stay in the wards for 2 nights with Matilda to prepare us for “home” whilst still having nurse observations every 6 hours. The home oxygen was arranged for us as Matilda will need to be on oxygen for quite some time. Those two nights went fast and soon enough we were heading outside.
Leaving NCCU that last time was the most intense feeling. I was excited; but so unbelievably scared. It was us now, no one else, us. Let me set the scene a little for you; NCCU is a place where there are constant, and I mean constant, alarms, monitors, observations, doctors, specialists and nurses. So going from that to just us was insane. We also had to leave behind some people we now consider friends, and leaving them to continue their battles. Some of these incredible people are still in NCCU to this day, way past their 100 days, and still fighting! I know that we’ll be friends for a lifetime because we’ve been through hell and back together.
I know now, it was me who needed to step up and show some resilience to begin our new chapter.
We got to step outside for the first time with Matilda. The first moments we spent with her outside those doors were amazing, and something that we had built up in our minds for so long. Something that we questioned we’d even get to do at one point. Rewind the past four months to us sitting in the cafe watching families leave with there babies every single day. I would cry almost every time hoping that one day it would be us. And there we were.
During our first week of living at hospital accommodation the Coronavirus started to become a significant problem. Anyone that knows me well knows that my mind spirals at the best of times, so having something else to be worried over was not good for me. In that first week out the virus was growing rapidly and closer. It is hard living in the city as we couldn’t go outside without seeing 50+ people. We couldn’t just get fresh air without coming into contact with someone and at this point I just knew I had to keep Matilda safe. So I decided to contact our paediatrician to see how he felt about us going home. He agreed that the virus was going to grow rapidly and Matilda was vulnerable. He asked if our ENT doctor could review and make the call.
Then on that same day we got the all clear to go...
So, surprise to those who don’t know- we’re home!
However in the most polite and respectful way - there’s a reason we didn’t want people to know. We need to ensure Matilda is safe. This means we simply cannot have any visitors in our home. It’s hard to explain to people that just because we’re home, doesn’t mean we are out of the wood work. Matilda’s lungs are still so underdeveloped, which makes her even more susceptible. If she was to get a common cold, it could put her in a very serious condition. So we have to be extremely cautious and protective.
We’ve been talking a lot lately about this situation and what we’ve been through. And we have asked ourselves: if someone we knew went through something similar how we would help? Because it’s funny - being “here” you know you have so much support around you; yet feel so alone. We know that you cannot tell people “everything will be okay,” we know you cannot fix any problems and we know you cannot take away any of the pain.
But what we do know is in NCCU you don’t have a choice on dealing with situations that arise. When people ask “how are you guys doing it?” It’s simple: you do what you have to do because you have no other choice.
You have to build your resilience to new limits and push forward, hoping for the best.
As Yasmin Mogahed once said: “Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going.”
Our new reality is scary, but so exciting. We cannot believe we have our beautiful girl home with us. I get to lay next to her and watch her sleep, I get to be there every single moment. I’ll do anything to protect her and keep her safe.
And whatever the future holds for us, I know with all of our resilience put together, we’ll be okay.
I’m going to say goodbye for now and thank you so much for the support you have given our family through this tough time. Those of you who are still on the “inside,” know we think of you every single day, are cheering from afar for all those little milestones and are comforting you in the days you can’t seem to find a win. To our family and friends here at home: we cannot wait to share our little girl with you all, but for now we’re safe in our little bubble and will be staying here for a long while.
All my love,
Megan
