"We both felt lost." What it's really like going home from the hospital before your baby.

The following is an excerpt from Claire Audibert's book The Letter E - a powerful story of hope, love, and family resilience.

Claire’s memoir chronicles her family’s journey of parenting a child with special needs; from his birth and the frightening first months of parenting a child with an undiagnosed condition through to diagnosis, and then learning to live with and embrace the hand they’d been dealt. 

Claire is passionate about diversity and inclusion, and raising awareness for KCNQ2 to help shed light on the rare disease and how it can affect families.

We arrive at the NICU for the 7am feed. I'm starting to get more confident with the breast pump, so I express next to Elliot in the big room, rather than in the privacy of the expressing room. 

The doctors do their rounds at around 8am and discuss Eliott's progress and provide us with any updates; they also answer a few of our questions. 

Shortly after, Ced leaves for work. He's lucky to have two weeks of paid parental leave, but we made the decision that he wouldn't use them just yet. 

The idea was to spend time with Eliott together as we settled into our new life as a family. But with Eliott in the NICU, Ced's going back to work to save his leave.

Eliott has yet another EEG in the morning and has a seizure while they're doing it. It's hard to watch his body stiffen again. My heart sinks. 

However, the EEG operator points out that having a seizure recorded will help the doctor assess what is happening to Eliott, and I guess that’s right.

While you're here, watch this video to help kids understand and recognise seizures. Post continues after video.

Ced returns after lunch, just before Henry and his team arrive. We’re sitting next to Eliott, as per usual, watching over him in his bassinet as he sleeps.

Henry suggests that we go to a separate room for our discussion. I put my hand on Eliott’s belly and tell him we’ll be back soon. I look at the nurse and ask her to keep an eye on him.

When we get to that windowless room just next to the NICU entrance, Henry points us towards an old-looking sofa to sit down, and I can’t help but think of all the parents who have probably sat on this sofa and cried their hearts out hoping their babies would leave the NICU and come home.

'How are you doing today? Ced, did I hear you went into work?' He gives us a faint smile.

'I did. I want to save my leave for when Eliott comes home,' Ced replies.

'That’s a good idea. Okay, I wanted to have a chat with you about next steps. With the MRI coming back normal, and little Eliott having new seizures, I would like to increase the medication doses to get the seizures under control — this might make him sleepy again. And then we’ll run more tests. We’ll need more blood, and another lumbar puncture,' Henry says, pausing to seemingly gauge our reaction.

'Do we really need one? Can’t you use what you took last time?' Ced asks. 

'We don’t have enough, and at this stage, we really need to understand what’s wrong. The EEG he had this morning isn’t good, as it shows the seizure that Eliott had at the beginning, but most importantly that there’s some residual activity after. There’s a possibility that it could be a B6 deficiency. It’s a very rare condition, but the good news is that he would only need to take some B6 vitamins.'

'And that’s it? When would we know if that’s the case?' It’s the first time since we sat down that I’ve been able to get words out of my mouth.

Could it be this simple?

We have only known Henry for a few days, but we trust him. The chat turns into a two-hour meeting. He takes the time to answer all our questions. 

We ask him for studies and articles we can read to inform ourselves. But he gently suggests that we don’t spend too much of our time reading research, since we don’t yet know what the cause of the seizures is. 

He promises to send us information and documentation on what Eliott has as soon as they know. He emphasises that they have no idea what it could be just yet.

After the discussion with Henry, we go back to see Eliott and talk to him while he sleeps. Six weeks to wait for the results of the B6 test feels like a lifetime. Eliott isn’t even a week old, and so much has happened — it feels like 10 years have passed, not just a few days.

I feel mentally and physically shattered. We’ve felt so many feelings, spent so much time looking for answers on Google, sat with so many different specialists and spent a lot of energy trying to understand all the medical concepts. 

And to top it off, my body has been through the strain of labour, delivery, and then a considerable loss of blood. That’s not to mention the hormones, lack of sleep, and having to stay in the hospital chair by Eliott’s side 12 hours a day.

To everyone else, a week can be such a short amount of time. But for us, it has been life changing; it feels like we have gone to hell and not managed to find a way back yet.

How could this be happening to us?

We both feel lost, so Ced asks if we could get some psychological support. The doctors and nurses are trying to be reassuring and positive about Eliott’s health, but every bone in my body is telling me that there is something seriously wrong. I pray for a quick fix, but I know that even if it does come, we are broken and need some help.

No one again mentions the chance of Eliott going home. When we get home that night, we try to have dinner, but neither Ced nor I feel like eating. I just keep crying. We start discussing whether my mum should come earlier than planned — getting her help next week might make things easier.

We agree that I will call her in the morning. We keep trying to eat; me playing with my food and pushing it to the side. Ced looks at me and then looks at the dinner he’s prepared for us. I’m looking down at my food, but out of the corner of my eye I see him leave the table.

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As he’s walking back towards the kitchen, he suddenly falls to the ground. His legs give way, and he just crawls into a ball and starts crying. My husband, the father of my sick child, is in a foetus position on the floor, desperate for the pain to go away.

And I am scared. Scared like I’ve never been before, because there is nothing to control here; just like that, our life has been turned upside down, and we no longer know which way is up.

I rush to him and try to take him in my arms. 'Ced, I’m so sorry. I’m so sorry, my love. I’ll ask Mum to come as soon as she can. We can’t wait another week!'

But he can’t stop crying, and I don’t know what to do.

So, I call one of our best friends. 'Matt, I don’t know what to do...' I’m crying so hard I can hardly talk.

'Are you okay? Is it the baby? What happened?' He’s clearly anxious.

We’ve told him how things have been progressing, but we haven’t spoken to him in a few days, so he doesn’t have the latest information.

'No, it’s Ced. I don’t know what to do.'

'Where are you?'

'We’re at home. We were just trying to have dinner.'

'I’ll be there in 15 minutes. Are you going to be able to open the door when I arrive?'

'Yes, thank you.'

It’s 8pm, and I’m vaguely conscious that Matt must be busy. I’m trying to save Ced, and I’m so grateful to know that help is on the way. 'Ced, Matt is coming,' I tell my husband.

When Matt arrives, Ced has semi-recovered and is sitting at the dinner table.

I open the door and Matt gives me a hug. 'How are you feeling, hon?'

I manage a nod and point to Ced, who’s looking distressed.

'Come on, mate, let’s go.' Matt’s tone is decisive. 'Get your shorts and sports shoes on.'

Ced gets up and starts following him, and just before leaving, Matt turns around. 'Please call Sophie and ask her to come here,' he asks, as he kisses me.

And then they leave.

I’m on autopilot. I call Sophie and ask her to come and stay with me. Like Matt, she knows what we’re going through; she’s been bringing us food and calling every day to check on Eliott since he was born. She’s one of my closest friends, and I know she’ll come if she can. She and her husband live with their daughter only minutes away, and as soon as she hears my voice, she says she’s on her way.

Before she arrives, I have time for a quick call to Mum. She picks up with a cheerful tone. 'Hi, darling, how are you feeling? How is Eliott tonight?'

I just want a hug; I want my mummy. 'Mum, can you come?' My throat is tightening, and I can hear Mum taking a deep breath to calm herself on the other end. 'Please. We’re not managing at all.' That’s all I can say before bursting into tears.

Thankfully, Sophie arrives and talks to Mum for a few minutes, and then she keeps me company.

I get a text from Mum an hour later; she’s changed her flight for the next day and packed her suitcase. It feels like a lifeline to know she'll be here soon.

Mum and I have an incredible relationship, and it’s been hard being away from her, especially during the pregnancy and then for Eliott’s arrival. We’ve been through difficult phases over the years — what mother-daughter relationship hasn't? But she's both the strongest and the most vulnerable person I know.

We were on our own for a while when I was a baby, and she was my hero growing up. She's always been an incredible mother and would do anything for my brother and me, and now for Eliott.

If there’s one thing Mum has always modelled for me, it's the power that lies in 'being present' when it counts. She's always made sure I knew that if I needed her, really needed her, she would be there. She is one of those mothers who tells you that you can call her at any time of night, and she'll come and pick you up if you need her, no questions asked.

That doesn't mean she will handhold me through everything, but I know that if I need her, she will be there.

And she's always encouraged me to do the same for my close friends and family; they know that if anything happens, no matter where we are in the world, I will drive for hours in the middle of the night, board a 30-hour flight, and do anything I can to be with them.

Throughout the years, knowing that I have a group of people around me, Mum being the first of them, on whom I can count on if things get tough, has always given me so much strength. It’s easier to take on new challenges, and keep pushing just a little bit more when things are hard, knowing you have a strong safety net — someone who will catch you if you fall.

So, after Eliott's birth, and with everything that happened since, I've tried to keep going, because I knew Mum's arrival was only a few weeks away. I kept telling myself that we could manage on our own, that the doctors would find out what was wrong, and by the time Mum arrived, it would just be a bad memory. But tonight, it's all too much, and I need my safety net to kick in.

When Matt brings Ced back, Sophie is still with me. As they leave, Matt and Sophie look at us and ask if we’re going to be okay.

'Yes, thank you. Thanks for dropping everything to look after us tonight,' I say.

Ced, however, looks shattered. I ask him, 'What did you guys do?'

'He made me go boxing for an hour, to get it all out. So, I’m going to bed.' He then hugs me before taking himself off to bed.

When I wake at 4am to express, Ced is sound asleep next to me and looks more relaxed. I express, but it still takes 40 minutes to finish, and then I go back to bed. The alarm goes off again an hour later, and we get ready for another tough day.

We are both silent in the car on the way to the hospital.

Image: NightStandPress.
 

The Letter E is published by NightStandPress and will be available from June 8, 2022.

The book is available for purchase in e-book and paperback formats from Booktopia,  Book Depository, Amazon and all the other online bookstores. 

You can follow Claire on Instagram here.

Feature Image: Supplied.