I was 5 weeks pregnant when we discovered we were expecting, we were overjoyed! I loved being pregnant, I had a bit of morning sickness at the start and dreadful heartburn but otherwise it was pretty smooth sailing. I found out I had gestational diabetes but was at the lowest end of the scale and very well managed. So I had a lovely, healthy pregnancy and despite constantly overheating in the hot Perth weather, it was great. We decided (well I decided) that we wouldn’t find out the sex and we named our growing little bundle Noodle. Noodle who was extremely active, kicking all day and night.
Due to my gestational diabetes I was to be induced around 38 weeks, to ensure I had a safe delivery and baby Noodle didn’t get too big. I planned to finish up work around 36 weeks so I could put my feet up and get ready, I was really looking forward to that!
My last shift at work was Friday Jan 29th 2016. I was very busy training my replacement and of course bidding farewell to clients, suppliers and team members throughout the day. By midday I sat for a moment and thought I hadn’t felt Noodle kick for a while, in fact I couldn’t quite remember when Noodle last kicked. I wasn’t too worried as 1 week before I had a scan to check Noodle’s size and everything was perfect. I called my obstetrician who had me call the hospital to be examined over the phone. After a series of questions they asked me to come in for monitoring just to be safe.
I arrived at the hospital at around 1pm and was attached to the monitor. The midwife told me Noodle’s heart rate was a bit flat but it was nothing to worry about right now. I called my husband to let him know where I was but told him not to worry. Over the period of about an hour, more and more midwives came in and one informed me they would call my obstetrician to view the results. Suddenly my obstetrician was there and he moved me to the bed be checked out. After he did an ultrasound he quickly rolled me on my side and calmly said ” We’re going to get this baby out”. I laughed at him and said “no you’re not it’s waaay to early”, the look on his face made me realise this was serious.
I quickly rang my husband in tears and he got straight in the car and sped towards the hospital, the obstetrician told me he won’t make it in time. I begged him to wait till he arrived but that wasn’t an option.
Things got pretty scary from that moment. Nurses were prepping me for a c-section, they were planning a standard spinal block when suddenly my obstetrician said “we have to go” he ripped the bed out of the room, with me on it, and ran me down the hall. His face was white. I was in total shock, there were people everywhere and I was confused. I could hear my obstetrician say “we don’t have time” referring to the spinal block and not long after that I was fast asleep under general anesthetic.
My husband arrived when I was already in theatre so he couldn’t come in, he was understandably freaking out, not knowing what was going on. When Mikey was born he wasn’t breathing. He was given oxygen and taken to the hospital’s neonatal intensive care unit (NICU). Soon after my husband arrived the labour ward doors flung open and there was our little baby with a team of people, Andrew was taken along to be with him in NICU.
When I woke 2 hours later I was in agony, the pain was excruciating. Suddenly I saw my husband next to me and he had his phone in my face showing me pictures that I couldn’t quite make out. It was our little baby, born at 3.27pm weighing 2.75kg. I thought I was still pregnant so I was very confused. My husband told me we had a little boy and kept showing me the pictures. This little baby was covered in tubes and had a CPAP on so I couldn’t see much. Of course I asked to see him but I couldn’t. I had just had an emergency c-section and was still half asleep. He was in the hospital’s NICU so I would have to get into a wheelchair to meet him.
The time after waking from surgery and meeting my son is quite a blur. At around 9pm I was able to go and meet my little baby for the first time. My husband had gone home to change and get my hospital bag so a midwife took me to see him. I couldn’t hold him, only touch the parts of him not covered in tubes. I was so scared I would do something wrong and make the monitor go off. While I was there he stopped breathing multiple times. He would turn blue and become completely floppy. The pediatrician and nurses had to work so hard to get him to breathe again, it was so painful to watch. At some point my husband joined me and then the nurse told me I needed to go back and rest.
At midnight one of the pediatricians from NICU came to our room to tell us they were moving our son to PMH Children’s hospital. His seizures hadn’t stopped so they needed to get him on a cooling mat and they didn’t have the facilities available. They explained that his body temperature would be cooled down for 3 days and then it would slowly be re-warmed to limit brain damage. I was devastated. I already felt like I was miles away from him but now I really would be. They got him ready in the transportation pod and brought him into our room so we could say goodbye and get our first family photo. It still breaks my heart thinking about that moment. I was told that it was unlikely that I could see him in the morning as I needed to rest and I couldn’t be jumping into cars after a major surgery. I thought, try and stop me. I called through the night for updates and as he was given a large dose of phenobarbital (anti-seizure medicine) his seizures had stopped and he spent the entire time sleeping.
In the morning I convinced the midwives I was not in pain and they got me ready to leave to see my little man. NICU at a children’s hospital is a very confronting place. It is filled with beautiful tiny babies and the constant beep of monitors that remind you they are fighting a big fight. It’s a scary place. The smell of hospital hand sanitiser instantly floods all of the memories back for me.
Our mighty little man who we finally named Michael Paul Albert spent the next 3 days shivering on a cool mat which kept his body temperature at around 33 degrees. The pediatrician didn’t really say a lot. We were told once he was re-warmed they would do an MRI and that would give us a bit more information. We weren’t allowed to hold him until he was warmed back up so we visited many times a day, called through the night and just sat with him hoping he would be OK. He did take longer than expected to be able to regulate his own temperature so we just had to wait. All the while I was pumping milk, night and day, hoping I would have a chance to breastfeed soon.
Finally the day came when we were allowed to hold him, he was 5 days old. It is still the best day of my life. I cried, the amazing neonatal nurse cried while Andrew wiped all the tears off Mikey’s head, patiently waiting his turn.
Mikey had an MRI when he was 5 days old. The pediatrician arranged a time to talk with us about the results later that day. He led us to his office and my heart sunk a little. He said the words we never expected to hear, “Michael has suffered severe brain damage”. At that moment I fell apart. I tried to listen to what he was saying but I was completely drowning in grief. Andrew was amazing. He was so incredibly strong, he didn’t have time to grieve because he had to keep me together.
The pediatrician explained that the damage was to his motor cortex so it was likely to result in a diagnosis of cerebral palsy. I instantly thought he would be in a wheelchair and incapable of living a full independent life. I feel guilty admitting it but I didn’t know anything about CP, I had never taken the time to understand it. The doctors told us “we had to wait and see”, the unknown was difficult to digest. Over the next few weeks the words that the pediatrician has said completely consumed me, I could think of nothing else. It was exhausting.
Mikey was monitored at PMH to check he would tolerate my milk, he was fed through a nasal gastric tube. He started to suck and take a bottle and was down graded from the intensive care floor to the “departure lounge”.
I was able to start breast feeding Mikey and he took to it like a pro, I was thrilled that something was going right. After 6 days at PMH he was moved back to our hospital which we had long left. He stayed for a further 15 days to be monitored as he wasn’t great at regulating his body temperature. He also needed to stay until he could take all his feeds via bottle or breast or he would have gone home with a feeding tube. He was very sleepy due to the medication he was given but slowly he started to wake and we would fight over who got to hold him and stare into his beautiful little eyes. On February 19th we were finally able to take him home. It felt like he had been in hospital for so long so it was very strange to finally take our little boy home.
Mikey was automatically enrolled into the Early Intervention program at PMH which is designed to give these mighty little babies the best start to life. We got started with physiotherapy right away. Later we also started occupational therapy, speech therapy and swimming. It was time to do absolutely everything we could to give this little fighter the very best life.