Today we met the hallowed Prof Morris, head of high risk obstetrics at the RNSH. He came in with his team and told me they would take care of us as long as we were here. He would be checking in every Tuesday morning and every day two other doctors would check in on us. He asked the same questions as everyone else.
Your Dad is exhausted and unimpressed by even the most senior of doctors at the moment. He looked at Prof Morris straight ion the eye and said:
“Is our daughter going to survive?” He is afraid you will be sick too.
“I don’t know. The chances are not good if she is delivered now, but at 26 weeks-“
“But we most likely won’t make it that far. Can’t we just go home to our own bed, to our son and let nature take its course? If there’s no hope, why are we putting ourselves through this?” Oh, God how I miss your cheeky brother. Since all the commotion has died down I’ve had a chance to think about it. I miss him every day. Every single moment. It’s a bit like an ache. I keep remembering waving goodbye as I dropped him at Nanna’s, off to have our scan. It hurts.
Prof Morris was kind. He touched my knee, (the first time a doctor has comforted me in any real way) and looked me in the eye.
“This is a terrible situation. But you are still here and we don’t know why. We honestly don’t know how far you will make it. It doesn’t make any sense, you should be in labour as we speak, but you’re not. There aren’t many circumstances in medicine where your odds improve daily by 2-3%. Each day her chances are better. Today you are 24 weeks. If she is born right now we can resuscitate. If you go home and go into labour the experience will be traumatic. Here you have your best chance. I know you haven’t yet decided whether or not to resuscitate. That’s okay – it’s a big, brave decision either way. I can’t tell you what to do. But let’s take it one day at a time.”
Dad is keeping everything together. He’s working crazy hours, visiting us, visiting Lachie and then the dog at home. He’s mowing the lawns and scrubbing the floors for the open houses, (We bought you a wonderful new home to share with your brother last Thursday. I can’t wait for you to be able to run around in the yard together). And he misses us. He’s exhausted and alone and I can no more help him than I can help you.
So I answer as he hangs his tired head. “Okay. 2-3% each day. I’ll need a calendar.”
Aunty Shell, (what an amazing God Send she’s been), has brought us in a calendar and I’m marking the days. Once we get to 99% survival rate I’ll start on outcomes. And I’ll know you won’t be sick.
Prof Morris sent us off for a proper scan. The best thing is I got to go in a wheelchair. I’ve been eating my meals lying down and twisting my upper body slightly to the side, (though being careful not to move my hips, because that puts too much pressure on you and could lead to labour.) So a wheelchair ride is a big deal. And to top it off I get to see you on the screen again.
You are dancing and pirouetting around so much the doctor can’t get a hold of you with the probe. She smiles. It’s okay, she says. We really just need to see what’s going on – no need for measurements, as we know you are healthy. It’s my fourth scan in as many days, but this one is the most critical. The membranes are still bulging, but the amniotic fluid is perfect. Yet another medico looks at us in awe. She doesn’t understand it either.
Dad asked again. “Is there any way we’ll make it to 26 weeks?”
She shakes her head.
My friend Mel is in our room when we get back. She is Emma’s mum – Lachie’s friend Emma. You’ll get to know her one day. Dad leaves me to talk to Mel and bounce some ideas off her. I feel so guilty talking about this in front of you, but I need to talk to someone. I tell Mel how afraid I am that my body is slowly killing you. That you are healthy right now but as soon as you are born you’ll be sick. And if you are born right now that sickness will likely stay with you for the rest of your life. That you won’t have a quality of life. That you’ll be in pain or constant excruciating frustration trapped inside a body you can’t use. And that I’m afraid that I’ll never forgive myself for it. She doesn’t judge me. She gets it straight away, and I feel so much better. And then I hear the voice that tells me it will be fine. That I’m worrying about something that won’t come to pass. I feel strangely comforted.
Dr Mary is the head of Neonatology and she visited us this afternoon. We tell her we’ve decided not to resuscitate before 26 weeks. She tells us that it’s a very brave decision and that it’s perfectly okay to make it. Dad leaves to go to work. I’m worried about the toll this is taking on him. He loves you so much and he can’t do anything to save you. Neither can I, but I just believe the voice. I don’t know why. It’s calming.
I’m thinking about it all afternoon and what we told Dr Mary doesn’t feel right. I call the midwife – Liz. She’s got the same accent as Grandad and she has a quiet manner about her. She makes me feel safe. Every time I see her she says, “Aren’t you a miracle! Still pregnant!”
I ask her if I can see Dr Mary again and we talk a bit more. I can’t get in contact with your Dad, but I want to change my mind. Liz calls the NICU and speaks to Dr Jenny – Dr Mary is attending a birth. Dr Jennie comes to visit me. She’s not as gentle as Dr Mary, but she gives me the stats, (once again), and her straightforward manner is exactly what I needed. I want to change my mind.
I just told your Dad and he’s terrified. He desperately wants you to be safe and healthy. He’s worried about you being sick – we both are. The images we have are so terrifying. But he trusts me. He jumps in blind with both feet when I tell him “I just know.” You probably don’t understand how big an effort that is. We are both people who like facts, spreadsheets and scientific studies. Instincts and unsubstantiated gut feelings, voices in my head that tell me you’ll be okay – neither of us are used to trusting those. But he trusts me. And he says “If you think so then I believe you.” I’ve never ever made a decision like that without him, not in 16 years. But I knew in my heart, in my head, what decision I needed to make.
I have a new room mate tonight, so we are no longer alone together. But tomorrow Dad is bringing in Lachie and we can all be together. I’m singing to you softly before we get some sleep.
We spent all last night awake, the three of us. Gastro. You started off, then Lachie, now me. The first time you were sick you cried afterwards. As Dad comforted you, you yelled :I don’t want vomit on my pretty dress!” You have your priorities.
The busiest was when you were in the bathroom being sick and Lachie came in not feeling well – and threw up all over our bed. Dad has to travel for work tomorrow so after we were all cleaned up I sent him to bed and in Lachie’s room while we lay in bed waiting for the next eruption. None of us have slept and you just fell asleep on the floor wearing a bright yellow tutu. Even in illness you have the spirit of a million mischevious elves.