Coping with life in the NICU: a father’s perspective

Ahead of Father’s Day, we spoke to David Madoc-Jones about the birth of his daughter Edie at 23 weeks + 4 days and how he coped with the experience. You can read part 1 here.

David Madoc-Jones with his daughter Edie in the neonatal intensive care unit.

On 2 February 2017, Edie came into our lives after 23 weeks and 4 days of my wife Nicola’s pregnancy. She was one of the smallest babies to have been born alive at Cardiff’s University Hospital. What followed were some of the most difficult months of our lives, waiting for Edie to get better in the neonatal intensive care unit (NICU).

In the NICU, you can’t help but be exposed to a lot of people’s experiences. During our time there, some of the babies didn’t make it. It reminds you of where you are, that things can go wrong.

You also meet families passing through. Full-term babies who have had a rough ride for a couple of days. They leave the NICU while you might be going home with a memory box and no baby. Then add to that the constant noise from the breathing machines. It takes a toll on you, psychologically.

My wife Nicola and I realised that if we were going to cope, we needed to switch off. We never wanted to be parents that were there 24 hours a day. We made the effort not to phone the hospital in the evenings, to get some normality when we went home. I tried to go to the gym. I’d drive away from the hospital for a couple of hours and then come back after. It was nice being away from the hospital for a bit.

David and Nicola used the Kangaroo Care method with Edie as often as possible in the NICU.

As a father, I was conscious of my role not only for Edie but also for Nicola. Her body had gone through a traumatic experience and she was under pressure to breastfeed. The nurses wanted Edie to have as many nutrients as possible: preemie babies need to get their stomach digesting milk as quickly as possible, it helps to ward off against infection. I felt like a passenger because I couldn’t do that much. I was just trying to hold things together.

The NICU can be a lonely place. It’s easier if you’re a couple, you have someone to rely on. Family and friends may say things like “everything will be fine”. They meant well, but I didn’t find it comforting because it’s based on blind faith.

Nicola met a couple of mothers who had very early babies. Women tend to bond in the breastfeeding room. Having someone to talk to, that’s difficult for fathers. I tried not letting myself be too isolated. I’d go to the gym with a friend from work and I’d be quite honest about where things were with Edie.

Edie spent four months in the neonatal intensive care unit at Cardiff University Hospital.

I also sat on doctors’ patient rounds. I was intimidated at first. In the early days, Edie’s prospects were so dire, they spent a long time by her incubator. I would ask questions and they were happy to explain things in simple terms. We wanted to know everything about Edie’s wellbeing. We never wanted to hide from reality.

Our consultants were great, and we had honest conversations with them. We were confident in their expertise, but statistics aren’t everything. There are exceptions. Nicola is feisty, determined. I am too, to an extent. We hoped that Edie had that in her as well.

In the NICU, there was a picture board of patients who had survived. There was a baby who was born slightly later than Edie but at a similar birth weight, and there was a picture of her first day at school. That kept us going. We read positive stories. Not necessarily of babies born as early as Edie, but babies as small as her. We found comfort in that.

Edie wearing a crown for her first birthday
Not only did Edie survive, she is now thriving!

Finally, the day came when we were able to bring Edie home. Leaving the unit was emotional. We went through a great deal with the doctors and the nurses and it was sad to say goodbye. We’ll never forget them, we owe them a great debt.

I don’t want to give people in our situation unrealistic expectations. But I hope our story can offer some comfort. Sometimes, there is a way out. And with more medical research, more babies like Edie can not just survive but thrive.

This blog is based on a phone conversation with David. You can read part 1 about Edie’s story here.

2 Responses
  1. Hi David,
    Thanks for your inspiring story from a father’s perspective. I was wondering how your transition from NICU to home with your baby girl? Was there a lag time for her therapy’s to start in the community? What was the most difficult part of caring for a preemie at home?

  2. David

    Hi Tracey,

    We’ve been relatively lucky in that Edie’s health has been good since she came home. The first few nights were difficult because we were out of our comfort zone of previously having had access to doctors and nurses. So there were some sleepless nights worrying whether she’d stopped breathing because she seemed too quiet.

    We had to administer some supplements and medications on a regular basis initially, but that was okay (we’d been shown what to do before we left the NICU).

    Getting the specialist formula milk proved a little difficult. There was initially some confusion caused by the prescription we’d been given, and our local chemist wasn’t clear what the hospital doctors intended Edie to be given.

    Generally, we tried to treat Edie as normally as possible from the off, but this was possible because she didn’t need breathing support or other significant assistance. She just needed to grow (she was 4lb 12oz when she came home, aged 4 months!).

    I hope that helps. Do let me know if you’ve any other questions.

    David

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