Today was the first day something good happened in a while, and as tiny as the win is, I feel so buoyed that I must write it down. This month has been one long flat-line of doldrums for our little family. No steps forward. No steps backwards. The routine monotony of the daily procedure; wake up, call the hospital before shift change at 6. Drop Lachie at his grandparents. Drive through the crawling traffic to the hospital, listening to my ‘uplift’ playlist in the car. (It is rarely true to its name). The trepidation creeps through my body as I approach the car park. Knowing I will have to fight for a parking spot. Knowing I will have to take the long walk past maternity, watching the happy mums and dads putting their shiny new gurgling babies in their brand new car seats. Knowing I will eventually get to that wash station, scrub my hands raw and take my extra layers off because they could carry with them extra germs. And feeling that sense of anticipation, nervous dread even, as I approach your room for your cares at 9, zeroing immediately in on your oxygen level.
You have been in HDU – the High Dependency Unit – for a couple of weeks. One night, we called the NICU to check in on you at shift change and the nurse told us you had graduated to Level 2 and were in a different room. No ceremony or exclamations. I fell asleep feeling more positive that night, knowing in my heart that you were progressing and that things would be okay. The voice hadn’t been around for a while but back then I knew that you would be okay.
You have been on and off CPAP a few times, with a disastrous stint on low flow oxygen in between. Though you are no longer critical you are very much dependant on the oxygen flowing through your nasal cannula. That seems to be the biggest concern for now. The doctors are not sure why you aren’t getting better. I thought I would feel better once you were no longer critical and in some ways I do. I’m not as intensely afraid for you anymore as I was a month ago. I know you’re not out of the woods, but there is a thin layer of comfort cushioning me from the underlying dread I have felt since I came into hospital back in February.
Instead I feel empty. I can’t take you home with me. I can’t cuddle you when I want to. I can’t feed you the way I want to. We are surrounded by beeps and bright lights and I look out your window some days as the world wizzes by and wonder when we’ll be allowed back on the merry go round. I would kill for some sleepless nights with you right now. The memory of feeding your brother every night, just him and me in the silence of the twilight tugs at me as I leave you every evening. Your due date is only a few weeks away and I can’t see how you will be home by then. It seems impossible, but I know you. And I know you love impossible.
We have watched other babies come and go, one by one. Emma, Darcy, Autumn, Will and Emily have all come and gone, all with their interesting stories to tell. Autumn’s mum was on holiday from Perth to visit a specialist for Autumn’s older sister Lizzy who has epilepsy. She went into labour at 30 weeks as she stepped off the plane. She was only in this room for a few days, like so many others but it was nice to learn about her family. It breaks up the day sometimes.
The day Autumn arrived her dad was doing her cares before her mum had recovered. He turned and looked at me, white as a ghost and said “I feel a little…” as he trailed off his eyes rolled back in his head and he fell to the ground with a thump. The doctors and nurses all fled to his side and began looking for ID bracelets of some kind which may explain his condition. One doctor suggested taking his blood pressure once his feet were elevated but they could only find tiny finger sized cuffs which fit a preterm newborns arm. As highly skilled as these doctors are, they are also very specialised. No one was particularly comfortable dealing with an adult so they ended up calling the emergency team from downstairs. As the commotion swirled around me I held you tight, hoping, (silently pleading), that he didn’t have some terrible flu or exotic disease that you may have been exposed to. As it turns out he was epileptic and had forgotten to wear his bracelet.
Emily’s mum had a little boy four years ago then found out she had cancer. It was a miracle she got pregnant with Emily, but there were complications which meant Emily was born at 28 weeks with an infection that may result in loss of eye sight. She had trouble tolerating food too, but she moved back up the coast to her local hospital before long and I never found out her prognosis.
Will’s mum and dad were on holiday in Thailand from the UK. When her waters broke at 32 weeks she panicked, told her husband to get her on a plane anywhere with good hospitals as soon as possible and ended up in Sydney. When Will was born at 32+5 he was perfectly healthy and coping very well. His mother and father had to find accommodation, having no family or friends in the country.
And now we share our little room with Amelia. Amelia’s mum and dad don’t come in very much. She was almost ready to go home having graduated to special care some weeks ago. Suddenly she took a very unexpected back step and was moved back down into our room. The doctors don’t know what’s wrong, but it reminds me that things could be worse – and that there is no reason to think that they won’t be one day.
When I feel utterly depressed I look back through your records at your oxygen levels a week ago so I remember you are still moving forward, just very, very slowly. I have begun keeping an excel spreadsheet which details every stat I can record at 8 hourly intervals which coincide with the shift change. It started as a way of keeping the doctors and nurses honest. For a long term patient like you it is difficult for them to keep tabs on the general trend and at times we have butted heads over your treatment. Dr Mary is always very attentive to our concerns, however, and reminds me that I know you better than anyone in the world. That doctors can and do get it wrong occasionally, and that some kids just don’t follow the rules the way the research says they will. That some kids break the rules. That you did, and that is why you made it so far. And that sometimes, despite all the science and training and expertise – sometimes they just don’t know. But they are doing the best they can.
I kept that in mind last week when Dr Jane came to see me after the low flow oxygen trial. Her news wasn’t good. They don’t know what’s wrong, you won’t be going home anytime soon and there may be lasting effects from the level of oxygen you had needed. In short, they don’t know how to fix you and you may have developmental problems. I am hoping you won’t be here forever, but sometimes I do wonder. I feel lost and alone here. People give me sympathetic smiles, but no one can relate to this experience. Not even your Dad. Dr Mary tells me you will be going home on oxygen because there is nothing wrong with you except for your lungs. You are healthy and strong and have beaten everything so far – just one more little hurdle to limp over.
Still, I feel as though I am losing perspective. I try to remember Christmas and remind myself that no matter what things will be different by then. One way or another. It’s the other that keeps me awake at night.
But today, a win. Just a small one, but it is enough. Today Nurse Bryony saw I needed a lift. She’s not my favourite nurse – she has a firmness about her I can’t see past right now. But today as I sat silently holding you a tear escaped and slid peacefully down my cheek, though I had my eyes closed in an attempt to contain it. I felt her touch my arm gently, but when I opened my eyes she was gone. A few minutes later she returned with an open cot.
“Lucy is enormous. It’s time she was in a real cot.” I thought back to the time when you were a newborn and I had come into this very room to get some nappies. I had gawked at the child in the cot and a nurse had said – “Don’t worry. She will be that big one day too.”
Yes, it is a tiny thing. It’s not news of your imminent release, or your continued health into your teens. It’s not even confirmation of your developmental success. But I can see you now. I can hold you anytime I want to. And more importantly it is something. We are moving again, albeit at a snail’s pace.
Right now, that is enough to get me through tomorrow.
Maybe even a week.
Looking at your beautiful face as I left I knew again…you will be fine.
Perspective is a funny thing. People often ask me if I would change anything if I could and I honestly don’t have an answer. Of course I would take away the pain you felt. Any parent would. But the experience has changed us all and in some ways we are better off.
All those days and nights I spent looking out the window as the world kept spinning, wishing we could harness some of its momentum, I realise now how much those little wins meant. They kept me grounded. They allowed me to cope with the bigger losses. I should have known better than to doubt you, even if it was just for a minute. You were already living proof that miracles are just rare opportunities waiting to be grasped by a spirit strong enough.
Today we sat quietly together watching a DVD and as I held you I realised what a gift it is to know – really know – how lucky I am to have you and your brother here with me and safe. It was just a moment in time that I will probably forget in years to come. Nothing extraordinary, except for who I was sharing it with. Through our experience with the way you came into this world I have enough perspective to understand how incredibly fortunate we are to share your world. As frightening as that may be, that in itself is a gift I would never return.