Matilda and Me

Matilda and Me

Our journey with Mater Mothers’ Neonatal Critical Care Unit (NCCU), like so many before us, has been a long, hard and tough road; which is why Jake and I felt it was important to share our story.

Throughout this crazy ride we’ve learned a lot of things along the way. But more importantly we’ve learned how easy it is to lose perspective of the things that matter most in life. The last 100 days (and counting) have certainly changed us! Our lives prior to our beautiful girl had consumed us with things that now seem so trivial. Our gorgeous daughter, Matilda, has had her health entirely compromised and we have felt helpless; nothing has been within our control and we’ve reached new levels of desperation we never thought we could reach. But through it all, we know that nothing else in life matters more than our loved ones and their wellbeing.

We first arrived at NCCU, two weeks after I was flown from Rockhampton and admitted to Mater Mothers’ Hospitals in Brisbane with severe pre-eclampsia. This diagnosis quickly progressed into HELLP syndrome. I was introduced to my new obstetrician (who is the first of many I met at Mater Mothers’ who I consider a hero). I can’t recommend her highly enough!

Each day was a whirlwind. My mum, husband Jake, and I grew new bonds that I never thought possible. At 29+4 weeks I had an emergency caesarean. I remember this day so vividly; being so scared. So many questions ran through my mind. Would I be okay? Would our baby be okay? Would I get to be awake for the procedure?

Time went so quickly and within four hours we had our gorgeous girl, Matilda, weighing in at 1.12 kilograms. I heard a cry, saw her briefly, and Jake was able to go with her to cut the cord. But because of how small she was, I wasn’t able to hold her, feel her and let her know I was there. She was soon taken away to NCCU for care. I was absolutely terrified, but what I soon discovered was that this was to be the easy part, and only just the beginning of our journey at Mater Mothers’ Hospitals.

Day 1

I was so naïve walking into NCCU, experiencing those alarms and noises for the first time. Soon, I was speaking with neonatologists, researchers, lactation consultants, and paediatric specialists who shared so much information with us. The pressures of motherhood were being felt really quickly, on top of the anxiety around Matilda and her care. I’ll never forget our first kangaroo cuddle and getting to feel her warm little body against mine. The look in Jake’s eyes seeing her on me! I felt in that moment, that everything would be okay.

Day 2

The very next day, Matilda had a pulmonary haemorrhage and was intubated. She was on high frequency oxygen at extremely high levels for a long period of time. Over the first two weeks, Matilda required copious amounts of suctioning. She was on more medication than I have ever taken in my life, had long lines inserted and intravenous drips. She 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!

Day 20

During those first few weeks 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, and after two and a half weeks we were told she would need the operation. This was the worst week of our lives, but we were so grateful for the doctors and nurses keeping us informed every step of the way.

Matilda underwent the surgery. Doctors told us that she was one of the sickest babies in NCCU at the time. Post-surgery she was hooked up to so many different monitors. 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.

That same day one of our favourite nurses visited and said to me “as long as we keep fighting, keep talking, keep reading, keep touching, she will keep fighting”. Of all the things I’ve heard people say to us while we’ve been in NCCU, those were the words I needed to hear the most. I knew that if Matilda was still hanging on, we had to hang on too!

Day 25

In those next few days we found positives. Matilda stayed on 40% oxygen, she had her morphine weaned by 1 mic, and she was allowed 5mL of milk. Anything positive, we would find it.

In the days following Matilda received a blood transfusion, among other concerns tended to. 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.

The biggest positive of all was that Jake got to have his first cuddles with her, and I felt a weight lift.

Day 30

Even though time was slow, the days went fast. NCCU soon became so familiar; the nurses were our saving grace. 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. The amount of times people tell you “it’ll be okay” and “they are specially 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 the time to chat to us. Even on days she wouldn’t have Matilda, she’d check on us and make sure we were okay. She pushed Jake and I to get in and do things and to gain confidence as parents of a premature baby. I am so thankful for so many nurses, but this one in particular.

Day 35

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. They sacrificed Christmas with their own families to make sure they were there to help heal families like mine and others’ in NCCU. They made this Christmas extra special for all of us.

My family surprised Matilda and I with a visit on Christmas Day. Matilda gave us the best present of all and was extubated after five weeks and put onto CPAP. She was making some serious progress and went from CPAP to high flow and then to low flow.

Day 40

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 jumped between high flow and low flow oxygen. She is great at showing us when she isn’t ready or is being pushed too far. Matilda needed 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 our time in NCCU 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.

Day 50

Weeks kept passing by and Matilda was growing strong. We reached 50 days, reaching new weights, and celebrated with everyone in our NCCU room. We helped others celebrate their milestones too, because we knew even the smallest of things to people on the outside of these doors, meant so much to the people inside.

Like everything 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 respective families. The support they have given us has been beyond 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 of 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, and 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. Will others be understanding of 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.

Day 70

Whilst our NCCU 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. They’re the ones we’ll hold closest.

Day 90

Matilda has grown so much and is now 4 kilograms. That’s almost four times her birth weight. She was moved from the Cardiac Surgical Nursery and transferred to the Special Care Nursery. 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. Mater Mothers’ Private Rockhampton had been contacted and we were waiting on travel and a bed.

In the days waiting for Matilda’s transfer north, her condition worsened. After multiple tests it was confirmed that her Laryngomalacia had become significantly worse. This meant that they needed to operate sooner than 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 breathing. Because of this, we were moved back to the Cardiac Surgical Nursery while we waited for Matilda’s surgery.

Matilda went in for her surgery. This would be her second surgery while under the age of three months. Our BIGGEST fear was that she would need to be intubated for a longer period of time after. But our resilient girl soon let the nurses know she wanted the tube gone quickly after surgery. She recovered so well from the surgery and remained on high flow for a week after. Matilda’s 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. I continued trying to breast feed, but unfortunately for us, Matilda was still struggling. So we started using bottles. At this point my milk supply had almost completely stopped due to stress. This was one of the most disheartening things for me; not being able to share in such a special mother-baby bonding moment like breastfeeding. But I know she is getting healthier day-by-day and feeding in other ways.

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, our paediatrician was reluctant to send Matilda home with her strider the way it was and prepared us to stay in Brisbane for another three months living in our accommodation with Matilda. I knew we would be surrounded by other families right next, sharing similar experiences.

Day 100 and celebrations

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, and have felt an overwhelming sense of support from people I hadn’t connected with in years. People who are now a part of our little village of support; fighting and encouraging our little girl!

We celebrated Matilda’s 100 day birthday with some of the greatest people we know. Walking in and seeing how much effort the nurses had put in and being able to reflect with them on our journey so far was such a memorable moment; seeing them all as proud as we were. The nurses even gifted us with a cake and we sang happy birthday.

Soon, we started to prepared for ‘rooming-in’. Rooming-in gives families that have been in NCCU the opportunity to stay on the wards for two nights with their baby to prepare them for home, whilst still having nurse observations every six hours. The home oxygen was arranged for us as Matilda will need to be on oxygen for quite some time. Those two nights rooming-in went fast, and soon enough we were leaving hospital and to our accommodation at Reg Leonard House.

Leaving NCCU for the last time was the most intense feeling. I was excited; but so unbelievably scared. It was just the three of us now, no one else. NCCU is a place where there are constant (and I mean constant) alarms, monitors, observations, doctors, specialists and nurses to keep a watchful eye over your baby. So going from an environment like that to ‘home’ was insane! We also had to say goodbye to people we now consider friends, and leaving them to continue their battles. I know that we’ll be friends for a lifetime because we’ve been through hell and back together.

Reg Leonard House

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. Reg Leonard House was great and very accommodating, allowing us to stay there with the oxygen. It was a stepping stone for us to adjust and was so good knowing the hospital was so close by.

Rewind the past four months to us sitting in the cafe watching families leave with their babies every single day. I would cry almost every time hoping that one day it would be us. And there we were. Within a matter of days we were given the all clear to head home!

Rockhampton bound

Our new reality is scary, but so exciting. We cannot believe we have our beautiful girl home with us. I get to lie 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. Resilience isn’t necessarily something that is taught. Instead, it’s something that needs consistent practise. But on rare occasions, a child can be born with more resilience than most adults! One of these rare children is Matilda! Whatever the future holds for us, I know with all of our resilience put together, we’ll be okay.

Thank you to everyone who has shown us so much through this tough time. Those of you who are still on the ward in NCCU, 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 with our Mater little miracle.

A quote that gave me comfort was this: 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!

All my love,
Megan

 

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