Going back to work again

I managed 2 whole weeks and a couple of days back at work before the reality that I could lose one of my daughters really sunk in. I think the point at which it hit home was when the doctor took us aside seeking to confirm that we knew one of our daughters only had a “slim chance of survival”.

We didn’t. Until that point, no-one had outright said there was a greater possibility of one of my daughters passing away than there was that she would survive. Please don’t mistake this to mean I thought they would both grow up and start challenging for Olympic medals. I would say I had a realistic view based on what we had been told up to that point; I knew they had a long way to go in hospital and that they were both very ill with not many treatment options available to them. I also understood that there could be difficulties for them in later life, but that we wouldn’t know what these might be until they begin to develop and start working towards all the developmental milestones that they need to achieve. Anyway, I digress.

I was unsure if going back to work when I did was the “right” thing for me to do. Looking back, even with the benefit of hindsight, I’m not sure I have an answer for that. I don’t regret going back to work for those 2 weeks; The girls were stable, although one of them could have been was described as critical, and we were able to call and check on them as often as we needed to try and feel reassured about how they were doing. I also knew that if I needed to, I could drop work and head straight to the hospital if that was the right thing to do. However, it was after that conversation with the doctor questions of “what if” began to float around in my head. In particular, because her condition had moved towards the more critical end of the scale over the weekend, “what if I’m not here and something happens” began to become more prevalent in my thoughts.  My daughter’s condition had deteriorated overnight and I made the decision that I wasn’t going to leave the hospital again until either she was more stable and not as close to the critical end of the scale or until she had passed away.

To cut a long and emotional day short, the doctors offered one final treatment that could buy enough time for my daughter to be taken for heart surgery at another hospital. There were no guarantees, and pre-term babies aren’t normally offered this treatment, but it’s all we had to go with.

The days that followed were difficult. When we weren’t on the unit, we were constantly waiting for the call from the unit to say that we needed to be there as quick as we could. Every time we entered her room, we would wince when reviewing the ventilator and monitoring equipment to see how she was doing. Both of us hoping there would be some sign of improvement and then giving each other a solemn look of “maybe next time”.

Despite the odds against her and the warnings we had received from a number of doctors, she started to make improvements and take small steps forward. After 6 days, she was strong enough to be transported to another hospital for her heart surgery and was returned to the NICU 4 days after that.

What followed was another very tense week of preparing for and expecting the worse. We had been told she would come back in a worse condition than when she left for the surgery, but she made no improvements at all for 3 days after she came back. But, once again, with support from a few more drugs, she started to respond and improve. Thankfully she rallied enough to give the doctors hope and she has now been moved out of ICU in to HDU.

Over those 2 and a bit weeks, we spent more time in the parent’s accommodation at the hospital than we did in our own home. It wouldn’t have been practical to even try to work during that time. Even if I had been able to complete a normal working day from the hospital, my head just wasn’t in the right place to be dealing with customers or colleagues that may not have understood what was going on. They didn’t know I was attempting to prepare myself to say goodbye to one of my twin girls, and how could I tell them?

Was going back the first time a wrong decision? I don’t think it was. For me, I feel I needed to try to get back in to my routine so that I could have some sense of normality. Yes, I was spending a few hours after work at the hospital, but given the previous 11 weeks, that felt normal enough to me.

I’m back at work (again) and whilst the girls continue to remain stable I fully intend to remain at work and try to continue with some sense of normality. Unfortunately this means that I don’t get to see my girls everyday at the moment. But if we know I can’t get to the hospital, my wife will make sure she goes so she can send me loads of photos.

I suppose what I’m trying to say, in more words than necessary (sorry about that), is that when your babies are in NICU there will never be a “right” time to go back to work. Something will always come up that will make you second guess if going back to work is the right thing to do. If you do go back, there will be days when your head just isn’t in it and all you can think about is being at the hospital. There will be other days when you get engrossed in work and once you stop for 5 minutes you will likely feel guilty for not worrying about how they’re doing.

My advice on going back to work is to:

• Let someone there know what’s going on so that if you do need disappear at short notice they are away of what the reason is likely to be
• Try to understand what you are capable of dealing with. Perhaps not dealing with customers for a few days (if that could be an issue) might help you to get back in to your routine.
• Agree how you and your partner will communicate with each other during the days when you’re not at the hospital. We have agreed that whoever goes to see them first will send the other a quick text about how they’re doing and this will then be followed by more detailed updates as doctors come round. We even do this if one of us goes to park the car which is 5 minutes from the unit.
• See if it would be possible for you to start early and finish early in order to get a bit more time at the hospital.
• Make sure you continue to look after yourself. Eat and drink plenty and try to get some rest when you can.
• Try to look out for signs that you’re not coping with being at work. Perhaps you’re struggling to sleep more, or waking up and not feeling rested, whatever it is take time to reassess if you’re doing the right thing for you and your family.
• If you’re not sure whether you’re ready to go back, speak to your GP. It may sound out of the ordinary to see your GP in this scenario, but they may ask the one question you haven’t that makes it clear if you should be going back to work.