After NICU – What happened when this mum was given more time.

Maternity leave, what does it mean to you? My first experience of maternity leave started 3 months early, when I suddenly went into labour at just 26 weeks gestation. I was terrified I was going to lose my baby, her heart rate was only 80 beats per minute and my placenta had abrupted.

I went under for an emergency c section, although I ended up having forcep delivery, and we did not see our little girl for over 5 hours. She was whisked away, taken straight to the neonatal intensive care unit, where she could receive the emergency medical care she needed. Whilst we waited we put on a brave face for each other, trying to prepare ourselves and our family members for the worst.  I contacted work to let them know what had happened, I know not exactly a priority at this point, but I needed to feel like I was doing something useful. Hearing the shock in peoples voices and relaying what had happened to everyone was difficult, but the support we got was amazing and will never be forgotten….

But, this was not how I expected my maternity leave to begin and I certainly didn’t expect to have a baby weighing just 1lb 11oz (770g).

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When we first got to meet our little girl, I’d tried to prepare myself for that very moment. There she was, attached to a ventilator, tubes and wires everywhere, and countless syringe drivers set up for her, monitors alarming. All I wanted to do was pick her up and know that everything would be okay. The first 72 hours are critical. One of the first things a nurse said to me, who happened to be a colleague from when I had worked on the unit a few years ago, was “remember, it’s one step forward and two steps back, it will be a long journey.” This stuck with us all the way through and we will never forget that.

The staff were amazing. Having worked on the unit when I first qualified I knew only too well the risks. There were a lot of staff who were ex-colleagues, however they treated me as Mum and were very supportive to us all. Reminding me that I was her Mum, not her nurse, also explaining all medical information in a way, that as parents, we could both understand it. On maternity leave you do not expect to hear about ventilation, blood transfusions, phototherapy, x-rays, and so on.

Unable to do what families would get to do when their child is term and healthy: Not having that first family photo; not being able to change your baby’s nappy or wash them until you are told its ok to; unable to feed her; only being able to touch your baby through an incubator and for a very short period of time in case they can not tolerate being handled.

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The first time I held my baby was when they changed the incubator at 1 week old. She stayed on a little nest that she had been on in the incubator, and we were so lucky to get that chance. We couldn’t cuddle properly for 12 days and even then it was when we were told that our baby was stable enough to come out of the incubator. We jumped at that chance knowing we may have to quickly hand our little girl back if she couldn’t tolerate being held anymore or the position wasn’t quite right and all the monitors were alarming… that was the start of my maternity leave. Doesn’t seem right, does it?

The majority of our family members hadn’t even touched or cuddled our little lady till we got home due to the risk of infection. We couldn’t be luckier with the support from our families, they respected decisions made and were there for us throughout the entire journey.

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There are other families who had to wait far longer to do these things, everyday activities we would usually take for granted. But a preemie parent treasures every little moment they get with their baby, you just don’t know what’s going to happen the next second, minute or hour of that day. When you walk out of that door to go home for the night you wait for a phone call; a phone call that could tell you that your baby has taken a step back. Even if there is no phone call from the unit, which is a good thing, you phone through the night to get updates as it’s all you can do to feel close. Is this really maternity leave?

When I phoned through the night I was often asked what I was doing awake at that time? Well, I’m expressing of course!. I may not have been able to feed my baby directly by bottle or breastfeed, but I could express and freeze it for when she was ready. By doing this she had expressed breast milk hourly, just 0.4ml to start on day 3 through an oral gastric tube. I was finally doing something for her that no-one else could.

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As our little girl kept moving forwards and defying the odds she got stronger and stronger everyday, she got us through this as she has so much strength. I sat by her incubator everyday and watched her and when we were able to we took over her everyday cares and were encouraged to take her out of the incubator when we wanted to with the nurses there to support us. It took about 8 weeks, but we were finally looking after our little girl. When we got to 9 weeks she had her first bath. At 10 weeks we were told we could start rooming in! We were so scared, this meant we would soon be taking our little superstar home, and that frightened us as she was still on monitors.

When we left the unit she had no monitors, no beeping. We had spent the entire stay learning to look at our baby, listening to the beeping and to know if something wasn’t quite right with her breathing. It’s hard to detach from this. My maternity leave so far had been a mixture of emotions, but we were on our way home, finally.

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I heard that Medway NHS trust were signing up to The Smallest Things ‘Employers with Heart’ charter once we were home and I called my manager at once to see if it would apply to me since I was already on leave. They quickly confirmed it would and that I would receive the full 13 weeks and 3 days that our little girl was early as additional leave at full pay. We were hugely grateful. My manager and colleagues have been extremely supportive in so many ways, getting regular updates, plus visiting us and this was another example of the Trusts understanding and support.

What it means to us:

Of course, she is worth every extra penny spent, and more, but when you have to travel back and forth to the hospital every day, pay for petrol and parking, as well as food and drink on the go, the costs quickly add up and the extra income this provides is crucial.

Premature babies have a lower immunity so the risks of getting colds and having hospital admissions are high. The additional time helps ensure I can attend the consultant appointments, eyes and hearing checks and so on.

Our time in hospital was 11 weeks and 3 days, nothing can take away that time. However, the additional leave gives time back, previously I may have only got 6 months with her at home, now I have 9. This means I will have more chance of seeing her reach developmental milestones. If I had had to return to work when she’s 9 months, although just 6 months corrected I could miss out on her first roll, the first time she sits up on her own or crawls. I now hope to get to share these moments and maybe even see her stand for the first time.

Knowing we have got the time back that was spent in hospital is incredible, we will treasure every extra moment that we have as it has given us more time to spend with our little girl.

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If you’d like to ask your employer to support staff whose babies are born premature, find out more about our ‘Employer with Heart’ charter here, or contact the Smallest Things directly at smallestthings@yahoo.com

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