For some reason, the words really stung.
“She flunked. We’ll have to up her oxygen before you take her home.”
I don’t know if it’s just that the bubbling emotion inside has over-ridden my need to keep a calm exterior, and has finally boiled over. Or maybe it’s just one too many steps back; one that I didn’t expect. Or the flurry of activity that this week has been. I don’t know. But this time I reacted.
On Saturday we came in to find Nurse Katherine waiting patiently for us with your things all packed. (Surprisingly, you have accumulated a lot of stuff over the past four months.)
She smiled calmly and said, “We’re moving today. To Special Care.”
To special care. Three tiny little words with a power so strong it has ruled my every waking thought for the past month or so. Level 1 Care where you don’t need your own dedicated round the clock nurse. Where they think you are well enough and that you are safe.
It doesn’t always work that way, I know – it didn’t for Stella – and I get the sense that no doctor or nurse will ever tell me you are truly safe. But in a world where the first time I held you was an awe inspiring milestone, and having an uncovered cot was a feat that spurred us all on for weeks – moving to special care is indeed an achievement. A big one.
Everything was stacked into the base of your cot and Kath put a rescue mask on you so you were not without supplemental oxygen for the 20 metre trek. Once given the green light the operation proceeded with military precision, and you were back on the monitors in mere moments.
Since that moment we have had exit meetings with our team of doctors and specialists, and I have been given a list of post discharge appointments for every specialist to keep tabs on you. Nurses twice a week, eye specialists, paediatricians, sleep studies, respiratory specialists, physios, occupational therapists, dieticians, speech pathologists, developmental paediatricians, neonatologists, audiology experts…the list, I am sure, goes on and on. There was a mandatory first aid training session with the head nurse and an inspection of our home by the oxygen company. Then a lesson on how to use the oxygen tanks and portable units. For a baby that barely breaks two kilos, it amuses me that you have a literal army of people caring for you.
Part of the process was learning how to bath you and care for you with the oxygen tanks. How to put your portable monitor on. What to do in an emergency. What formula requirements you will need, and how to fortify it. What to do if the monitor alarms. How often we should expect to be back in hospital. Which vaccinations you will need aside from those on the schedule.
My head is swimming through a tumbling, churning tsunami.
There have been precious few quiet moments this week to remind myself that you are on your way home. In a world where minutes drag like hours and days drift by in seconds, this new injection of energetic confusion has been difficult to grasp and has made it even more difficult to appreciate the enormity of what is coming.
You’re coming home.
Despite the long hours I have spent in the nicu and the days stacked upon days wading through the doldrums, I feel like I have not had a minute to process that you have even arrived, let alone what we have gone through to get you to this point, about to come home. In these one or two quiet moments between the chaos of preparations in Special Care, I realise that before that night – that wonderful, bittersweet, terrible night that you entered this earth – it was just you and me in the quiet. I could control what I could control, which granted, was not much, but it was a task I was determined to master. I had time to sing to you. To dare to dream of the future you might one day inherit, if we were so lucky. To remind myself to keep at it, to will us to the finish line. Since that night life has just blurred. There are times I want to get off – just for a minute – and take a deep breathe.
The preparations at home are going quickly too. Cots, clothes, car seats – the usual newborn swaggle of protective devises, sleeping devices, feeding devices. There is no quiet anywhere in this world for me right now. You are in your cocoon, quiet, snug and safe, and I have not had the time to process what has happened, what will happen. And it has occurred to me, just today, that for the last four months I have craved the opportunity to be your mother in the little ways that other mothers take for granted. To feed you when you are hungry, hold you when you need comfort, dress you when you wake. And now that opportunity sits just on the horizon in plain view and it is terrifying.
You are safe here. You are cared for here. I have held you and watched over you each day but I have not mothered you. And this Saturday, all of a sudden it will all be up to me. With oxygen chords and rambunctious toddlers and midnight feeds. Somehow, between now and then I must find a way to process the last six months of our lives, from that fateful night that we bought a house at auction and a little voice in the back of my head nagged at me and told me something wasn’t right…till this moment now, sitting here watching you as you sleep.
For now, that thought seems too overwhelming, so I will try and process this last few hours instead. Nurse Katherine forgot to put your thickener in this morning. An easy, easy mistake to make in a nurses overscheduled, over tasked day. Your response was to vomit your entire bottle, (and a few previous it seemed), all over me. Drenched in baby vomit I fed you a little more, thickened this time, and administered your medicines. The nurses prefer I do this myself since I will be doing it three times a day for many months to come. I held your mask as you screamed, stinking from the fermented milk, and gave you your steroids through the nebuliser. I am hardened to this task, and though it hurts me that it frightens you so much to have the mask on your face, I am reminded that you would not be able to come home without this medication. My resolve is steeled, but it tugs quietly, solidly, at my heart.
Then the other nurse Katherine came in and told me you flunked. And after all these months of measuring my responses and keeping my feelings in check, my facade cracked wide open. Suddenly I was angry, I was sobbing, I was scared and ashamed of my anger all in one bursting moment. I told her it wasn’t fair, that they should wait to test you the day before you go home, not a week before. That they should believe in you like I do, that everything has been set up for you to come home on 120ml, not 250. That I’m not sure that I can handle this process being drawn out an extra month for an extra level of weaning. It feels like it is going on forever already, and I want the medical intervention to be over soon. For the very first time since that damn scan I did not hold back. I did not control myself, or force myself forward towards something I could feasibly believe would get better.
This was the nurse who had brought her fourth son’s mobile from home so you could have music during the long months in HDU. This was a kind and generous soul, who dedicated herself to your care many times. And she was standing in front of me, stony faced, uncompromising, telling me;
“That’s just how it works. No. We only do it once, and we do it a week before they leave.”
“But her oxygen levels are dropping day by day – she might even be off by Saturday!”
“She’s going back up to 250. She won’t be off by Saturday.”
“Why can’t you retest her? She only just failed!”
“A fail is a fail.”
“But she averaged 91%!”
“She needed 92.”
“This is so unfair!”
“I’ll get Dr Mary.”
And this is the paradox of the NICU. The talented, caring, professionals are trained in such a way. In a moment that I needed compassion and understanding she was not allowed to give it to me. At no point will a parent get any real and complete solace. The numbers just don’t allow it. Because although these people are in this profession because they possess a certain kind of soul – a very special kind – this world is ruled by statistics. And no one knows better than me that statistics are a cold comfort, and only if you find yourself on the right side of them. So while my façade crumbled after months of constant reinforcement, hers remained steady.
Dr Mary came to console me. And to remind me it’s okay to be upset. That she expected it long before now. That she would have been the same. And, partly, it worked. But the confusion runs deep, and this is a long time coming. From dire predictions, to a terrifying birth story, to surprise successes and everything in between. From the moment I was told I would lose you and believed it. From the day I was secretly happy you were born, even if it was months early, because I was desperate to see you and have you cared for. From the realisation a mere second later that your path would be treacherous and feared almost instantly for your life.
I know I am supposed to be overjoyed, excited, bouncing off the walls with anticipation. But I am exhausted, overwhelmed and worried I am not up for the task of being your mother full time, with all that it entails. It’s selfish, and I feel survivor’s guilt. I have seen so many mothers leave here without their babies. I’ve seen them cry their tearless cries, as the well has run dry. Watched their shoulders heave as they sob. Heard the distinct wail of a parent that has lost the true and pure love of their life. And I’ve watched them, hand in hand, walk sadly out that door with no baby to take with them. I’ve seen parents given good news then the bad – your baby will survive, but will have difficulties, disabilities, illnesses for life.
All of that we have avoided, by the grace of the voices in my head, or God, or the Universe, or who knows what. You are safe, and well, and though the path will not be clear, you have a good chance. Something no one has been willing to admit until this very day. And I should be thrilled by that, shouldn’t I?
And through it all, you plod along, and I know I must take my cues from you, and draw my strength from your strength. I have no idea what is to come. I have no idea how I will cope if we need to resuscitate you. I have no idea if I’ll remember to turn up to all those appointments, if I’ll even get there with two children, if I’ll remember how to set up the portable oxygen, or if I will know what to do if you suddenly turn blue. I have no answers. None at all. But somehow, I look at you, and remember that you have gotten us this far. You have never ever failed us, and I cannot fail you.
And Dr Mary looked at me and said, “I would have felt the same way. It makes sense, and its okay.”
And I replied, “Yes but you’re allowed to. You’re Greek. I used to be an accountant.” She laughed her hearty laugh and I felt better.
It was the first laugh I had heard all week and it felt good.