May 20 – 22

May 20

We have a plan. It’s not much, but it’s a plan. We met a new doctor today. Dr Allen came today to try and figure you out. He is a paediatrician who specialises in respiratory issues and sleep disorders particularly affecting neonatals. He was kind and reassuring and he had a plan. I don’t even remember parts of it but it’s a start. It’s positive momentum. And if it doesn’t work we’ll try another one. He’s going to try steroids and a range of supplements as well as a couple of other medications. He’s going to use a nebuliser twice a day with asthma medication. And the best thing – your father and I have been telling the nurses and doctors for some time that there is something affecting your stomach. Call it parental instinct, though I’m sure some of the nurses think its more like parental meddling. Maybe they are right. Their expertise with neonatals far outweighs ours.

But as Dr Mary says, I am the expert in you, and something has suddenly changed since the doldrums began. You are less settled and far less content. After a feed you squirm and scream, which is out of character. I know something is wrong but I don’t know what. Dr Allen thinks it may be a combination of reflux and moderate levels of constipation, and he has decided to treat you for both. There was other stuff too, medical stuff I can’t remember. In reality I don’t really care – we are moving again and I feel better about things. Even the idea of it has made a difference. I can see the light at the end of the tunnel again. It’s fuzzy but it’s there. I don’t know what the result will be but I know you’ll be okay. If pure willpower could get you over the line between the two of us you’d be sprinting towards it.

May 21

As I entered the room today Nurse Tess had a giant grin on her face.

“I have a surprise for you.”

“What is it?” I checked the oxygen level. Still 52%. Same as yesterday. I was confused.

“She drank an entire bottle last night.”

“What?”

“The whole thing. No push feeds at all.”

“Just like a normal baby.” I looked longingly at your oxygen sats, as if I could will them higher so your oxygen levels could go down again.

“Yep. Just like a normal baby. Because she is a normal baby. Take the win. She’s getting there.”

I took the win.

May 22

Today has been a microcosmic emotional rollercoaster within the large and never-ending joy ride that is our life right now. The steroids aren’t working, but the other meds are. It’s made a small difference to your oxygen levels and a huge difference to your feeds. I have been expressing like mad, hoping and praying my milk will last until you are ready to feed properly but it is running out.

To the outside world I must appear calm and unemotional. People constantly comment on how under control I am. I don’t necessarily intend to project that image but I can’t bear to deal with the fall out of falling apart. I don’t want the pity. I don’t want to deal with other people’s emotions about how well I am coping. Inside my guts are churning at a remarkable pace. I’m all over the place. But no one knows and that’s the way I like it.

And today I broke just a little.

As the social worker walked past she must have noticed me sitting alone in the room holding you and crying. Silently. I don’t know what it was that tipped me over the edge or how long I had been crying by that time, but she took you from my arms and put you gently in your cot before leading me to the quiet room.

She gently probed for information I didn’t know I possessed. I can’t remember even a few hours later what I said to her. In the end she managed to extract from my swirling emotions one pertinent thought amongst the millions competing for space in my head. At some point after half an hour or so of questions my inner most fears escaped and ran wildly for freedom.

“I have no milk left. I keep expressing and getting nothing. She’s almost out of reserves. She’ll have to have formula soon.”

“Okay. She’ll have formula soon.”

My voice was higher than I intended.“But what about NEC and all the other-“

“Just a minute. Let’s get some facts first.” She grabbed the phone and called Dr Mary who appeared moments later.

“Dr Mary, we have a very worried mum here. She has no milk left.”

“Have you tried motillium?”

“Yes. Three courses. It worked at first but not anymore.”

“Okay. I’ll let the nurses know.”

“You’ll let them know what?

“That we’ll need to start transitioning Lucy onto formula gradually.”

“But isn’t this bad? Won’t this set her back? What if she has another back step again?” The panic in my voice was evident.

“Why would you think that? You’ve been expressing for two and a half months! It was bound to happen. Her stomach is getting better by the day. Go easy on yourself. You are doing great.”

And that was it. That thought that was haunting me deep inside was out. And the swirling slowed. And I felt a little bit better.

“You need some rest. Go home. Play with your boy. She’s in good hands. You are doing everything right, but you need to take tonight off. Don’t come back after dinner. Just rest.”

And I did. I played trains with Lachie for a few hours and cuddled up on the couch watching television. We had takeaway for dinner. It was such a luxury having an uninterrupted afternoon with him and not being focussed on rushing back to the hospital. It was healing somehow.

When I rang back an hour ago Nurse Sarah answered the phone. I started asking all the usual questions from my spreadsheet but she cut me off.

“Don’t worry about that. The steroids are working.”

“What?” I could barely breathe the word.

“They’re working. Her oxygen is at 42%. And dropping.”

And suddenly the swirling stopped.

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