It was only a week in hospital; other parents are there for months or in and out for years with their sick children. I always knew these parents were amazing but I have a newfound respect and love for them.
We were only there seven nights but it felt like months to me. In fact, if you saw me you would have thought I had aged about 10 years. Still, I couldn’t care less about how I looked and the occasional shower was enough for me to feel ok.
It was seven nights of praying and contending for the health of my 3-week-old baby. It was seven nights of living real faith in action where I wasn’t always positive or hopeful and there were moments of total heartbreak. It sounds dramatic right? It was only a week but seeing my baby endure things that he didn’t deserve was probably the hardest thing I’ve ever had to go through. Every moment I wished I could have taken everything he was going through myself.
It was a Wednesday when I noticed the first ‘episode’. Lennox stopped breathing, his chest stopped moving, he stiffened up, his colour changed and he seemed lifeless. It felt like an eternity but the first time it happened it lasted around 30 seconds.
I had no idea what was happening but thought maybe he choked up a bit of milk and he soon regained his colour and went back to his old self so I didn’t think much of it.
It happened twice more the next night, the same thing and I don’t remember how long they went for but I’m lucky I was awake when it happened. We were straight to the hospital from there.
We got to emergency at the Children’s Hospital and they found us a bed straight away. When we arrived, he had a temperature over 38 degrees and that’s when they told us he was about to go through some testing. We didn’t know what we were in for but what followed were multiple blood tests, a cannula and a lumbar puncture along with a few others. Basically this was an hour straight of my 3.8kg baby screaming while we held him down and tried our best to comfort him.
Lennox was a small baby when he was born (3kg) and didn’t have the easiest entry in to the world. I was forced to have a caesarean just before 39 weeks when we found out he was not growing sufficiently in the womb and was not in a good position, posterior and wedged in my right side causing intense pain in my back.
The way I prayed and praised in the weeks leading up his birth when they were monitoring his growth led to him being named Lennox Jude. Jude, meaning praise.
I had prayed so much for his health in those weeks so this time in hospital was hard for me to comprehend. I thought the hard part was over.
After a while, we found out that the temperature he had actually had nothing to do with the episode but it was the reason they kept us in hospital. They transferred us to our local hospital that night, as they knew we would be in for a few days and we waited for the results.
Three more nights in hospital and they eventually called these ‘episodes’, which not one doctor had seen yet, ‘apneas’. They said they were due to reflux and sent us home with some medication.
We went home on edge but comforted in the fact we had some sort of answer.
That didn’t last long.
It happened again that evening but worse than I had seen and this time even though he started breathing after about 30 seconds, the episode lasted longer and my baby was non-responsive and lifeless for a few minutes. His eyes were open but they were blank, there was nothing there. He didn’t startle when we flashed a light in his eyes or made loud noises and then after it was over he fell straight to sleep. We went back to emergency straight away.
We went through triage at Liverpool Hospital and an amazing nurse listened so intently to what we said and described the non-responsiveness as postictal. I had never learnt so many new medical terms than I did in that week. This word perfectly described what Lennox experienced after his episode.
Waiting in emergency for a bed was an eye-opener. We were essentially waiting in a hallway and the place was packed. Next to us were two women, obviously high on drugs and one with blood on her clothes being watched by two police officers.
While we were there a man was bashing on the door to triage saying he was dying while his wife was yelling at everyone around her. He wasn’t dying and he had done the same thing a week prior.
So many sick children, a homeless man returning for the second time that week saying he could hear voices and another man not quite aware of how sick he actually was. Anthony and I sat listening intently to everything, to all the problems and to the nurses classing the needs of every patient in order of emergency. I can’t even imagine how difficult that job must get.
While I waited there, Lennox had another episode, which was the scariest one I had ever seen.
At this moment, there were no nurses that I could see but I yelled out loud for anyone to help us. A nurse had just finished her shift and was heading home, she quickly turned around and with her backpack on her back she ran back in, grabbed Lennox and ran screaming through the halls of emergency for a doctor and a bed. Anthony and I raced behind her. They told us to stay out of the way and we watched our baby seizure while they held oxygen to his tiny face. Moments later, the needles happened again and there were nurses and doctors surrounding him while they tried to find a vein – blood all over the hospital sheets and my screaming baby pushed me to the edge. That’s when I lost it and so did Anthony.
I felt helpless, hopeless and broken. Why was this still happening? Why did he have to go through this? It felt like we were in a deep dark tunnel with no light in sight. We both cried and then looked at each other as if to say ‘let’s pull together, we’ll get through this.’
As Anthony turned around in one of these moments, he saw a folder on the table which he thought said the word Jesus on it and took a photo. What an incredible reminder in the toughest moment that God was with us.
That night was one of the longest of my life. We sat by his bedside in emergency all night watching him. My eyes were fixated and I know it was only God who kept me awake because after the previous three nights, I had never been more exhausted. We spoke to the doctor on call that night and she asked more questions than my brain could deal with at 2am. She asked me if I had recorded an episode and I hadn’t, obviously. That was the last thing on my mind when my newborn was seizing. Her phone rang and she said she would be back in a few minutes.
As soon as she left something told me to pull out my phone and set it straight to video. Within moments I could see another seizure coming on and recorded it, I felt awful doing it but I thought if it could save questions and more misdiagnosis then it was worth it.
From then on, as soon as another doctor would ask about his episodes I would pull out my phone and show them. I never watched it because I didn’t want to live through it again and again.
We had a few more days in hospital after this. Anthony and my parents would be home with Max while I sat in the children’s ward in the hospital day and night. The nights were long because I barely slept, I would hold him upright for almost an hour after every feed and watch him whenever I could. I was lucky the Olympics were on so they kept me awake, sane and positive in the early hours of the morning. My life became chatting to the nurses and doctors, waiting for changeover to hear any updates I had missed, returning text messages, cheering for Australia in any sport possible and caring for my boy. This was my routine day in and day out.
During those few days, there were more episodes, which they had now diagnosed as seizures, and a few more tests, which included more awful blood tests, an MRI and an EEG.
People would bring me meals and every morning Anthony would come to the hospital to bring me coffee. GODSEND!
All the while I was desperately missing Max. I had only been home barely two weeks from the hospital when Lennox was born and during that time I was recovering from the C-section so I craved some proper time with him.
Each new day would bring waves of emotion, we thought we would be sent home and things were improving but then another seizure would happen. All the while we were praying and I know so many others were too.
There were moments where I would pray so intently and fervently and others were I could barely get out a word and would rely on prayers and encouragement from others. I’m so thankful for all those people in that time.
The doctors couldn’t find anything serious in any of his scans and finally got the dosage of a different medication right and they seemed to stop the seizures once and for all. He hasn’t had one since.
Lennox gets off that medication in about a month, cold turkey. We’re not weaning or trialling anything new and I believe we wont need to. I do believe he’s healed and even though there are moments where I worry about taking him off the medication and where I wonder if we’ll have to endure this again, I’m reminded of the goodness of God and I truly feel His peace. I also know we have the love, prayers and support of so many amazing people.
Lennox has a cute little chocolate coloured birthmark on the right side of his head. It’s on the same side that he was pulling towards in my womb and the side that they initially thought was causing an issue when they did his brain scans. This little mark was the first thing I noticed when he was born and I loved it straight away because no one else in the world had it. Now, it’s so much more to me, it’s a reminder of his incredible journey so far and God’s mark of faithfulness on his life. Every time I look at it, I smile knowing that he’s got great things ahead of him, my beautiful boy, who was born in a place of praise and and will have that testimony for the rest of his life.