I am so proud to be sharing this inspiring blog post written by one of our beautiful customers Megan who is mum to her incredibly brave, strong and resilient baby girl Matilda, who was born at 29+4 weeks via emergency cesarean weighing just 1120g. (1.12kg and 2.47lb).
When Megan shared this blog with us about her incredibly journey with a the premature delivery of her beautiful daughter Matilda, their roller coaster journey in NICCU, NICU and Matilda's many life saving operations - I immediately asked her if I could share with you guys, our amazing community.
I hope you enjoy reading this beautifully written blog post of this brave family young family, and that it can also help give strength to anyone out there who may be also going through something similar.
PART ONE - Our NICU Journey So Far
Our NICCU journey, like so many, has been a long, hard and tough road. I want to begin by saying this piece of writing is not to get sympathy or to scare people; it’s purely just to share our story.
Throughout this crazy journey we’ve learned a lot of things; however most importantly we’ve learned how easy it is to lose perspective of things that matter in life... This isn’t something we do on purpose, it’s almost by default. The last 80 days have changed us! Our lives prior to our beautiful girl had consumed us - and now they seem so trivial.
Throughout this journey: the health of Matilda has been entirely compromised and we have felt helpless; everything that has happened during these tough times has been out of our control; and we’ve reached levels of desperation we never thought we could. We’ve felt broken, scared. Even though it shouldn't take trauma to stop us getting caught up in the everyday stresses of life, it sets in even more that nothing else in life matters except those around us... Our loved ones and their well-being.
Our time in NICU began 2 weeks after I was flown and admitted into The Mater, Brisbane, with severe pre-eclampsia which progressed into HELLP syndrome. I met my new Obstetrician - who would eventually be the one to deliver my baby and be the first of many people I consider hero’s. I couldn’t recommend her enough.
To me she literally made the call to save Matildaa life. Each day was a whirlwind; yet still filled with so much waiting around. My mum and Jake, my husband, grew new bonds that I never thought they could. They would fill the days with board games, facetimimg my nephew and sister, movies and cards.
After waiting those two weeks, Matilda and I couldn’t stay as one any longer. I had an emergency cesarean at 29+4 weeks. I remember this day so vividly; being so scared. I never imagined having a cesarean. Would I be okay? Would our baby be okay? Would I get to be awake for the procedure? One of my best friends arrived down to visit as a surprise, and sure enough was able to be there before the procedure. What a blessing this was for both Jake and I.
Time went so quickly and within 4 hours we had our gorgeous girl, weighing in at 1120g. I heard a cry, saw her briefly, and Jake was able to go with her to cut the cord; I wasn’t able to hold her, feel her and let her know I was there. She was soon taken upstairs to the Prem Med section and even though through all of this I was terrified, what I soon discovered was that this was to be the easy part and our journey at the Mater Mother’s Brisbane was only just beginning.
I admitted this quite early on: I was so naive. Walking in, experiencing those alarms and noises for the first time. Looking around feeling so new, while trying so hard to hold back the tears. I had no time to process things before I had researchers, lactation consultants, and specialist giving us information.
The normal pressures of motherhood were hitting me in the face; along with everything else we were facing with it. I’ll never forget our first kangaroo cuddle and getting to feel her warm little body against mine. The look in Jakes eyes seeing her on me. I felt in that moment, that everything would be okay. Everyone kept telling us about the roller coaster of NICCU and the ‘honeymoon’ period we would experience. However unfortunately for us, we didn’t get that.
On day two of her life, Matilda had a pulmonary hemorrhage and was intubated. Matilda was on high frequency and in extremely high levels of oxygen for a long period of time. Over the first 2 weeks Matilda required copious amounts of suctioning. She was on more medication than I have ever taken in my life, had long lines, drips and was so fragile. In true Matilda style she would refuse to breath and would need to be manually pumped with the neo puff.
These were the most frightening, yet relieving times; I knew our girl had fight and a hell of a lot of it. During those first few weeks she also had a large PDA that was not closing with medications; because of this her lungs were filled with blood and weren’t able to heal. In the gloomy future we knew a heart surgery was on the cards; after two and a half weeks we were told she would need the operation. This was the worst week of our lives. The same moment we were given this news, I told Matilda’s doctor that no matter what, I needed him to tell me what was happening through this whole journey; no matter how hard it would be to hear, I needed to know; and that he did.
Matilda underwent the surgery and our little girl was sick. Words straight from the Doctors mouth, she was the sickest baby in NICU at that time. He had to prepare us for the worst; she might not have made it. There was not one limb of Matilda’s that didn’t have something attached to it and there were more alarms than ever.
We were in a new room, with new faces and new nurses. I felt so much guilt inside that Jake hadn’t held her yet, I had three times and he hadn’t. What if something were to happen to her and he never got to experience that. That day, I allowed myself to fall to rock bottom. I allowed myself to think the worst. Looking back I’m so glad I let myself do that; from rock bottom, you can only go up. Not only Jake and I, but our little fighter too!
That same day one of our favourite nurses from Prem Med visited and said to me; as long as we keep fighting, keep talking, keep reading, keep touching, she will keep fighting.
Out of a lot of the words I’ve heard in here, those were the ones I needed to hear the most. I knew that if she was still hanging on, we had to hang on too! In those next few days we found positives. The slightest positives to some; but we made sure we had found them. "Matilda stayed in 40% oxygen today, she had her morphine weaned by 1 mic today, she was allowed 5ml of milk today". Anything positive, we would find it. In those following days Matilda had a blood transfusion, concerns of NEC, somewhere along the road Matilda broke her humerus, secretions like never before, but my God, did our girl fight!
Matilda then went on a 10 day steroid course to hopefully help her lungs (neonatal lung disease) develop. Although the steroids could potentially have long term affects; the short term outweighed them immensely. Jake got to have his first cuddles with her, and I felt a weight lift. Even though time was slow, the days went fast. NICU soon became so familiar and the nurses were our saving graces.
Of course like anything in life, we’ve had tough times. Not necessarily just with Matilda; but in trusting people with Matilda. There were nights I felt strange. But 98% of the time, I trusted these nurses more than anyone I ever have before; after all I’m trusting them with my daughters life. The amount of times people tell you, it’ll be okay and they are trained; it is so hard, let alone unnatural, leaving your baby in someone else’s hands, every single night. I have found friendships in nurses that may not be significant to them; but have honestly helped me get through some of the toughest moments.
We’ve had one particular nurse, who wouldn‘t be much older than me who would always take time to chat to us. Even on days she wouldn’t have Matilda, she’d check on us and make sure we are okay. She pushed Jake and I to get in and do things and to gain confidence. I am so thankful for so many nurses, but this one in particular.
Around Christmas time was when my love for the nurses grew even stronger. They made this difficult time so much more bearable for all of us, and what we needed to remember these nurses weren’t home with their families but they made our day so special. My family surprised Matilda and I with a visit for Christmas. Matilda gave us all the best Christmas present of all and was extubated after 5 weeks and put onto CPAP. In the back of my mind I’ve had the constant fear that Matilda would end up back on the ventilator; it’s not me being negative, it’s legitimately me fearing for her. I knew if that happened, we were in trouble and it wasn’t going to be a good conversation to have, but I try to keep it in the back of my mind, knowing it still could but hoping for the best.
She was making some serious progress and went from CPAP to high flow and then to low flow. We were having exciting new experiences like first baths, weigh days and first nuzzles, although again in true Matilda style she wasn’t ready for plans to be made for her. She jumps between high flow and low flow and is great at showing us when she isn’t ready or is being pushed to far. She’s had an ENT scope down her nose which showed us she has severe reflux, Laryngomalacia and left vocal cord palsy. But like everything else, our girl will keep fighting.
Matilda’s doctor became my saving grace. If he was not worried I felt myself ease the slightest. He always communicated issues and always explained his decisions. He made us feel that he genuinely cared for her. I won’t ever forget him and what he’s done for our family. During the time here we’ve seen people enter the room to visit their baby for the first time and explode into tears. this takes us right back to that time. We knew in those moments those people needed time. They didn’t need anyone telling them it was going to be okay. They needed to get through it on their own and in their own time, as we had.
Weeks kept passing by and Matilda was growing strong. We reached 50 days, reaching new weights, and celebrated with everyone in our NICU room. We helped others celebrate their milestones because we knew even the smallest of things to people on the outside of these doors, meant so much to the people inside.
And like anything in life, there is always a silver lining: I've had time to recover from surgery. Jake and I have got to know Matilda from watching and learning her cues. And finally growing closer than we ever thought we could to our families. The support they have given us has been amazing.
As the prospect of going home started to be spoken about more, my anxiety grew. We knew we would be taking her home on oxygen and we would have a lot to watch out for. This situation is all I've known for motherhood. I’ve always had a monitor telling me she’s okay, I have had nurses to support me and family to help. I’ve been questioning myself whether people will understand that I won’t want visitors and I won’t want anyone touching her for the risks that may come with it; understanding the trauma that we’ve all had. I guess for that I just have to trust that everything will be okay, whilst we still have so far to go.
Whilst our NICU journey isn’t over yet, it was time for me to reflect while I have the time, to see how far she’s come in these 70 days. We have grown so close to the nurses and found friendships with the people around us. If you haven’t seen yourself or someone else in this situation, you wouldn’t know the severity of it; it’s another world. A world I wouldn’t wish upon anyone. And in this place you need to remember, things could always be worse.
Even in the tough days get up and fight. We can see clearly, the family and friends who mean the most to us and have helped us do just that and provided constant support. These family and friends that maybe don’t know how hard this is, but still check on us and support us in unbelievable ways. They’re the ones we’ll hold closest and won’t ever compromise. To the people who haven’t been there like we thought you would: we understand that you don’t know how hard this has been, and we hope you never will.
A quote to leave on, that has stuck with me about our little girl:
“It’s not the size of the person in the fight, it’s the size of the fight in the person.”
My God, Matilda, you have fought harder than most adults will in their entire life. You’re my world; don’t give up!
Fellow NICU Mumma Megan
PART TWO - The Power of Resilience
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 practice. 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,