April 13

2011

The worst thing is I knew it was coming. They warned us at the start you would take a back step – probably a very big one. They warned us you were doing surprisingly well and not to get too comfortable, that life in the NICU is never this simple. And worst of all I knew it deep in my gut. As your oxygen requirements climbed and you started needing supplementation not just through the humidicrib but through your CPAP air flow as well, I knew, deep in my soul, that the worst was yet to come. No amount of ‘she has done very well, she is just tired’ from the nurses, or ‘this is to be expected’ from the doctors would silence the niggle in my head. No amount of reassurance would drown out the cool calm voice in my head that said ‘It will get hard, but she will be okay.’

One day, I forget which one, you had a slight temperature, but your bloods came back normal. The next day Nurse Tess said you just ‘didn’t seem like yourself’, but still your bloods were normal. The next day your CRP number, (I don’t know what that is, but it is of great concern to the doctors and nurses), came back a little bit high. They were hesitant to confirm infection, but they looked a little bit worried. They did a chest XRay, and Dr Anjali confirmed that you were suffering from Respiratory Distress Syndrome, a condition which affects the vast majority of 26 weekers. AT 34 weeks they begin to call this Chronic Lung Disease, but we are hoping you will be well before then. The next day your temperature dropped down to just 34 degrees and you needed to have your crib temperature adjusted. In your first month in the NICU that is the first time you have needed temperature control. Gradually all the gains we had so boldly made in the last month were being eroded. We were in the slow decline of the big step backwards.

And today, for the first time I didn’t call before I came in. I didn’t want to hear any bad news, I just wanted to see you. And I knew the news would be bad. As I walked in Dr Hanomesh took me aside and said “Last night baby had a bad night. She is having an arterial line put in so we can monitor her blood pressure, and act quickly if needed.”

His eyes were kind but his words were dire. An arterial line. A needle and tube straight into your tiny artery. Last week we were off the drip, almost off CPAP, on no oxygen, and today we are back almost to step one. Except that you are much sicker than you were then.

I walked up to your bed side barely able to contain my dread. The doctor at your bedside was unfamiliar to me, and deep in concentration. He had a syringe and a white line and a napkin which was smeared with blood. He was in full scrubs. Nurse Tess suggested I come with her for a few minutes and let him finish. You were screaming, red in the face and desperate for my help. That moment when I saw you and knew I could do nothing for you – it changed me, probably forever.

Nurse Tess gave me the bad news. “Her CRP number was a little higher than expected yesterday at 8 and today it was higher again.”

“How high is it meant to be?”

“Less than 5.”

“And what is it today?”

“92.”

“She’s sick.”

“Yes, we can confirm some kind of infection, but we don’t know what it is yet.”

As the doctor finished you calmed down, and I went and sat next to you for a while. Doctors came in and out and checked on you as I stared at you unable to do a single thing to take away your pain, let alone fix you. When Lachie was sick almost a month ago I was able to comfort him just by being there. Sleeping next to him when he needed it, holding him when he was afraid. Gradually he regained his confidence and was sick no more.

I can do nothing for you.

I expressed some milk, but couldn’t shake the pervasive, horrid feeling. And still the voice told me you would be okay. But I could do nothing.

In the hospital doing nothing what was I HAD to do to keep you alive. I could proactively lie there and be as still as possible to stop from going into labour. I could sleep in the same position for night after night, eat every meal lying down. Distract myself by singing to you. But now I can do nothing.

Hanomesh came in to check on me after an hour. There would be no cuddle today, I knew that already. I told him I had to go, that I didn’t want you to see me upset or afraid. I wanted to be your strength, not drain your energy.

He smiled and nodded.

“We will let you know if anything else happens. Right now we don’t need to ventilate, but if her oxygen climbs higher…”

“Yes, I know.”

“I have asked to do a double shift tonight. I will be here. I will take care of your baby.”

I could only smile and nod, but it meant the world.

They called an hour ago. You are being ventilated as we speak, and I am lying here on the bed, comforted by the animals, a cat at each shoulder and Jack next to my left hip. I’m trying to sleep but I know I will fail. I’m trying not to cry, but in the end all I can do – the only thing I can do for you – is to sob, and beg the owner of the voice in my head “Please. Please don’t let my baby die. Please, I will give anything. Any piece of myself you can have. Please let her stay.”

2014

You’ve made a new friend at kindy called George. You boss him around and he good naturedly follows you with a smile. And your teachers laugh as you yell at him across the playground – “George! It’s time for us to play jumping! George!”

As much as I want you to be kind and gentle with the other kids I admire your exuberance and forthrightness. I often wonder how I will be able to raise a girl, treading the line between pink everything, sparkles and gender stereotyping. Other times I know I have nothing to fear. You are, unchangeably, the essence of yourself. You wouldn’t know how to be influenced by a gender stereotype if you tried. And I often muse that you survived all that you did because of this stubborn sense of self.

You are loud and full of energy, (much like your brother), and charming to a fault. I tell myself that when I am worried about you. Now that you are well I must remember that just because I can do something to help, it doesn’t mean I always need to. This time I know you will be just fine.

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