"We are so incredibly lucky" : The Story of Billie-Rose

Wow, just wow! This story will bring tears of pure sadness and pure joy. Thanyou Tegan for sharing your story, Billie-Rose is certainly a fighter like her Mumma.

"I’ve wanted to share our story for a while now, I just didn’t know how. I wasn’t sure if I wanted to relive everything my partner and I have been through, not to mention my daughter. It was by far the hardest thing we have ever been through, but it has made us stronger and who we are today. I wanted to share our story because I think it is important to raise awareness for prematurity, as it is the number one cause of deaths in infants under 5. Now that’s a scary fact. 1 in 10 babies are born premature. And even less than 1% are born before 27 weeks, making my daughter even more of a little miracle to our family.

I can’t even begin to mention how lucky I am to have such an amazing husband, life partner and friend. Matthew and I speak about what we want to do, places we want to go and what we want to achieve in life all the time. Even though we have conversations about life all the time, I specifically remember the day we decided to start a family. Originally we had planned to wait until I finished my studies, as I was working full time and studying too. But many of our friends were expecting, my brother had just told us he and his partner were pregnant and it was making me awfully clucky! Some of our friends had taken a long time to fall pregnant too. Some took up to 18 months to fall pregnant, and Matthew and I decided we just couldn’t wait that long. So, within just that one 5 minutes conversation, we had decided to start a family, we were even already discussing names in the same conversation we were both so excited.

We were extremely lucky. I fell pregnant straight away. Less than four weeks later we were telling our parents we were expecting our first baby and they were going to be grandparents. I know it sounds cliché but it was all a dream come true. We couldn’t be happier. I had a really good pregnancy too. A touch of morning sickness for a few weeks in the afternoons but that was it. I was loving being pregnant and feeling our little baby kick inside me. Everything was perfect up until my 20 week scan. This scan was incredible, to see how much my baby girl has grown was amazing. But a doctor came in to have a second look, and they discovered a blood clot forming on my placenta. She said it wasn’t anything to worry about, if anything if it didn’t resolve I would possibly need a C-section. I thought to myself, If that was the worst thing that could happen it wouldn’t bother me. As long as she is born happy and healthy. My blood pressure was high at this check up too, which is where my severe onset of pre-eclampsia began.

My next check up was my 24 week check up at my local GP when I also had my glucose test. I was actually only 23 weeks at this stage. But my blood pressure was high again. My GP said to me in a calm voice, “You should go to the emergency at the Mercy and get checked out.” She seemed calm but still concerned, so off I went to the Mercy Hospital trying not to over think it too much. My partner met me there for support. I was monitored for a few hours, had my urine tested and my blood pressure come down. This was when 2 doctors first spoke to us about pre-eclampsia. I had heard of it before but didn’t know much about it. I was sent home being told it was just the start and it most likely wouldn’t get worse until late pregnancy, and if I had any concerns to get my blood pressure checked at the chemist anytime for piece of mind. Well two days later I had really bad back pain which I’m not even sure if it was related, however I had my blood pressure checked and it was through the roof. My husband called the Mercy and they said to come in for monitoring again. I don’t know why, but I decided to pack a bag, putting some snacks in (because I was constantly eating as you do when you’re pregnant), my laptop, uni books and a hoodie, just in case we were stuck there for a few hours. Little did we know when we walked into the hospital that late afternoon, that I wouldn’t be leaving again until a month later after my daughter was born.

This was one of the hardest nights of our lives. We weren’t prepared for what was about to happen and our perfect little world would come crashing down. Like other times I went in, I peed in a cup, had my blood pressure checked and this time had my blood tested too. I felt like were waiting ages just to be told I could go home when a doctor come in to talk to us. It wasn’t good. My hands are shaking and I am already fighting back tears as I write this. I was told I had severe pre-eclampsia, and that they will need to deliver my baby girl within the next few days. I was only 23 weeks and 5 days at this stage, so the doctor was telling us to discuss whether or not we wanted to revive her at birth or not if she didn’t come out breathing. Because she was still at such an early gestation, her chances of severe disability was doubled, she was certain to have many health problems if she was even to survive and it didn’t look good for her at all. I don’t think there are enough words in the world to describe the emotional pain we were in this night. So many uncertainties and so many questions, I just wanted to go home to my own bed and pretend none of that had just happened.

So I stayed in hospital that night alone as I did the next few weeks. The next day, I had an amazing doctor assigned to my case and I don’t know what I would have done without her. She gave us hope, she told us with each and every single day that passes, my baby girl would grow and her chances of survival would increase. They were going to let my baby girl grow for as long as possible until it was no longer safe for us. So, whether I liked it or not, I was staying in that hospital until my daughter was born and I was in the best place I could be. At first, I just wanted to be left alone to mourn the loss of my perfect pregnancy, the loss of my normal fairy tale start to motherhood and beginning a family. There was nothing normal about our situation and it all felt so unfair. Being in hospital all day and all night for weeks gave me so much time to think. What was going to happen? Will she be ok? What will happen if she isn’t? The questions were endless and my doctor did the best job she could to answer them all, but some things she just couldn’t answer for me, the unknown. I had so much support from friends and family. I had friends asking to come see me, which most of the time I replied with ‘I’m not feeling up for it today’. But my friends and family being the amazing people they are, would sometimes just surprise me. I may not have felt up to seeing people, but at the end of the day, when I did have people visit me, it made things feel normal again, and I would forget all my problems for a little while. I haven’t had the chance to really thank my family and friends for this, you all have no idea how much it really did help.

While being on bedrest was extremely hard for me (not sleeping in my own warm bed, not seeing my fur babies, hospital meals and most of all freedom) I have to share one amazing thing that happened while I was in hospital. As usual, my Mum would come sit with me during a chunk of the day while my husband worked a few hours during the day to make ends meet. I had eaten a few bites my oh so delicious hospital meal and I decided to make a vegemite sandwich instead. Thinking back now, it all made sense. Mum was pushing me to go down stairs to the café to get out of the hospital room for a while. But when I walked out of that elevator door, I was so shocked and surprised to see a huge bunch or friends and family there waiting for me, where they had set up and planned a surprise baby shower for me!! I cannot even begin to describe how surprised I was. I burst into tears as I hugged everyone. We all sat there for a few hours playing games, eating food that was actually delicious and catching up like a normal baby shower. So many people walked past staring or wondering what was happening as we were set up right outside the café. This had to be one of the best parts of my whole experience being in hospital and I cannot thank my friends enough for this. But at the end of the day, when they all went home, even though I had an amazing time and I felt so happy, I was alone again in my hospital bed and reality set back in.

About another week passed, it was a terrible rainy day when my doctors came in to my room, sat down and told me today was the day they needed to deliver my baby girl. I had been trying to prepare myself for this day since I walked into that hospital. I had to stay positive for the sake of our baby girl. I called my husband, then my Mum. And the rest of the day was a bit of a blur. I had a magnesium drip before going in for my C-section, which made me throw up when I hadn’t even eaten all day. This was to help my baby girls brain development before she was born. I had already had several steroid injections to help her lungs. Now the rest of the work was up to her, which wasn’t fair. What baby comes into the world already having to fight for their life. Well, mine did. At 4:30pm on the 26th of September, 2016, Billie-Rose entered the world. BREATHING. She even let out a little cry. At just 25 weeks and 6 days gestation, she was a tiny 675grams and 31cms long. The C-section was probably the easiest part of it all, a pinch on my lower back and that was it. I was having up to 2 blood tests each day which was worse and my arms were black and blue from it. So off went my tiny baby girl to NICU with her father, where she would spend the next 85 days and nights.

Although I didn’t get my ‘fairy tale’ start to mother hood, I was incredibly thankful my baby girl came out breathing. It was almost a bit of relief for Matthew and I. I remember calling my Mum, letting her know she was ok and she could now come in and visit, knowing she had been at home all day worried sick. But it wasn’t over for me either. The next day doctors discovered I had a major haemorrhage internally from my C-section. I had lost half of my body’s blood and needed 5 units of blood to replace it in emergency surgery. 3 days after she was born I finally got to go down to NICU to meet my daughter in real life. At this point I had only seen her wheeled off in her incubator and a few photos. Even though I was fighting for my own life just the day before, all I wanted was to see my baby. As if all this was unnatural enough as it was, not seeing my daughter until she was 3 days old was heart breaking. But that wasn’t it for me, the next day I was diagnosed with a bowel blockage which took two treatments to fix, and then my blood was too thin causing even more dramas. What was meant to be the best time of my life giving birth to our daughter, was by far the worst week of my life. Every year people remember the time their children were born, and this is the last thing I want to think about each time her birthday rolls around and it’s not fair. However, I am extremely grateful she is here and thriving. So after 8 days in HDU myself, I was able to hold my daughter, skin to skin, on my chest for the first time when she was 8 days old. Holding my daughter was indescribable, and I never wanted to let her go. I knew the NICU journey was going to be hard and an emotional rollercoaster, but not this ridiculously hard. 

Having a premature baby isn’t anything like a normal baby. You wait a few days before announcing she has arrived because you don’t know if she will make it, you don’t have friends and family flooding in with balloons and gifts coming to meet your new baby because they don’t know if they will make it and you could only have 1 visitor at a time in the NICU. There was no fussing over who she looked like more, whose eyes she had or what colour hair. She was hardly even a baby when she was born. A week later when I did finally announce her birth via text and Facebook, I didn’t even want to put photos up because she didn’t even look like a normal baby yet, and I knew people would freak out.  

A few days later, I finally got to go home which was bitter sweet. I was finally free, able to sleep in my own bed, see my fur babies and eat a beautiful home cooked meal. But every single time I left that hospital without my daughter it got harder and harder. There is nothing normal or easy about having a baby in the NICU. I know people may think or say things like ‘at least you get to go home and sleep” or “You have someone caring for your baby, you don’t need to do anything” but you are up all hours of the night pumping or wondering if your baby is ok, or if your phone rings at any point, will it be the hospital calling to say something is wrong. But I guess you could say I developed a routine, I got up every morning after pumping precious breast milk, got ready and went into the NICU to spend as much time as possible with her, and then went home to bed ready to do it all again the next day. Occasionally we missed her so much we drove all the way back to the hospital after dinner just to see her one more time and kiss her goodnight.

Some days weren’t so bad but some days were really hard. There were so many ups and downs. One step forward then two steps back. I remember one morning standing in the shower crying harder than I had ever cried before in my life. I felt so lost. So conflicted. I wanted nothing more than to be by my daughters side 24/7 like any other normal mother, but I didn’t want to walk into the NICU again for the 1000th time, watching machines, drugs, doctors, nurses and midwives keeping my daughter alive. Leaving her each and everyday, sometimes more than once a day, got harder and harder. I remember many times sitting there next to her isolette, plucking up the courage to get up and say goodbye to my daughter for the millionth time, getting to the car and bursting into tears. But as she grew, getting older, heavier and healthier, it did get easier. I had more freedom. I was able to help change her nappies, she finally got to wear clothes, and breast feeding her for the first time was incredible.

As our NICU journey progressed, a nurse one day mentioned the ‘h’ word- HOME! Our daughter was promoted to the special care nursery where she needed to just come off her oxygen and successfully do sucks feeds for 48 hours, and we were making plans to bring our baby girl home! I remember this day so well because my husband and I went back to the car after the home conversation with the nurse, and we both burst into tears we were both so happy and relieved at the same time, the first time in what felt like forever we were crying happy tears! So after 85 days and 85 nights, we roomed in at the hospital where for the first time WE got to care for OUR baby girl all day and over night before bringing her home. The morning we were discharged, Billie-Rose had her first photo with Santa at the Mercy Hospital by Hope Photography and Channel 7 news did a story on premature babies spending their first Christmas in hospital where Billie-Rose made her debut on National TV. So home we went, settling into our new life as a family, leaving the NICU behind us. We will always remember the sounds and smells of the NICU, the endless handwashing, kangaroo care and milestones reached. And even though we may be back there one day who knows, the memories, doctors, nurses, midwives, staff and families will forever be a part of our lives. We owe our daughters life to these amazing hero’s and we will be forever thankful for everything they have done for us. 

We are so incredibly lucky. Billie-Rose is now 18 months old, has just started walking and is achieving new milestones on a daily basis with no current health issues. Not everyone is so lucky and that’s why I want to dedicate this story to all the babies born sleeping, all the premature babies who didn’t win their fights and every little miracle baby walking this earth today. You are all so loved, missed and thought about every single day. You will have a special place in all of our hearts forever."

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If you have a story to share and would like to be featured, please email me: miraclemumma@gmail.com. Together we can raise awareness of premature birth and offer hope to others who are going or will go through the same. You are never alone <3

Disclaimer
These are the thoughts and opinions of Tegan and do not in any way represent Miracle Mumma or it's affiliates