Or at least I really wasn’t okay the other day and for better or worse I chose not to write this until I had been able to reflect on why I was not okay. I suspect I also didn’t just want to write what could have been considered a diary entry about why I felt scared, sad and helpless. Additionally, I noticed something while speaking to a colleague the other day which was too small to comment on, but fits nicely with this chain of thoughts.
I’ve already expressed that I found it hard having reduced time with my daughters since choosing to go back to work. However, I wasn’t prepared for no contact at all. Unfortunately, that is what happened as I managed to pick up a cold while in the office last week. Inline with the ward’s policy that means I have to stay away so as not to put my babies, nor those of any of the other parents, at risk of being exposed to something they may not be strong enough to fight off. So no, after three days of having to see my daughters through only the photos and videos my wife took, I reached the point where I was not okay; I was not okay with my daughters being in NICU; I was not okay with the fact that my one of my daughters is 100 miles away from home in a different hospital to her sister; I was not okay with how hard this is on my wife. I was not okay with anything that day.
So what do you do when you realise that you’re not okay? Tell someone. I was on the phone to my wife when it struck me and we were able to talk about it at the time and later on that day. She knows what I’m going through, what we’re going through, and is able to understand why I think the way I do about the situation. After talking it through, and reflecting on how far we’ve come over the last 8 weeks, I did start to feel better. But I felt bad for burdening my wife, she’s going through this with me too and doesn’t need me shovelling my worries on top of hers. I’m supposed to be there to support her, not make things more difficult. So who do I talk to? I haven’t decided if I find it easier and more beneficial to talk to someone who hasn’t experienced NICU or someone who can relate to what I’m going through, even if not directly.
A friend had to cope with one of their daughters being in hospital at a young age and can relate to how I’m feeling with surprising accuracy. Which is great, because they can understand where my feelings of guilt and fear (amongst others) are coming from and are able to reassure me that, for the most part, what I’m feeling is normal for this unusual situation. On the other hand, because they have an understanding of the situation, they also like to dig that little bit deeper (probably just to check how I’m doing) and occasionally that starts to feel uncomfortable. For example, when I spoke to the chaplain at the hospital I seemed to try and avoid any awkward silences by repeating the same thing over and over or even completely changing the topic and talking about something unrelated. Perhaps that is just my way of saying I don’t want to talk about it any further.
On the other side of the coin, there are friends and family members that will ask how I am and then react in one of three ways. The first is to cheerily say that everything will be fine, the girls are fighters and they’ll be home before you I it (believe me when I say I’ve known about the last 8 weeks). The second is an understanding nod of “I have no idea what to say” and so we then start talking about something else. The third is a look of “I wish I hadn’t asked, he’s said he’s not okay, what do I do? I should say something” and then offers an “it’ll be okay” to me before they remember a meeting they needed to go to.
I appreciate the positivity that group 1 offers, but sometimes being told “everything will be fine” really frustrates me because they’re saying that without any detailed knowledge of the condition and health of my girls. At first I thought that maybe it was my fault for not explaining, in detail, how my girls are doing. But even after sitting down with one friend and explaining everything, I still got an”I’m sure it’ll be fine” response.
I think group 2 is probably my preferred collection of responses. For the simple fact that I don’t feel obliged to continue talking about it, but could if I wanted to. Yes, they have little understanding of the situation, but they are prepared to listen and let me explain it to them. They don’t switch off when it gets too scary and at the end, they give me a hug and tell me they’ll be there for me if I need them and that I should try to remain positive. I consider that a useful response.
Group 3, just encourages me to say “Why ask if you weren’t prepared for me to not be okay?” Telling everyone that I’m fine, which I have done for the first few weeks, didn’t make it true. I’ve decided that I won’t keep saying “I’m fine” just to save the person asking the awkwardness of me responding with “no”.
Between a few friends from group 2 and friends, professionals and even strangers who have experience of NICU I seem to be able to keep myself sane enough to function day to day. I find it surprisingly nice to talk to some of the other parents I meet on the ward, but I have learnt to do this with caution because I don’t know how their baby is or whether in fact they want to talk to me.
There are few people out there that have experience of their baby being in NICU. A couple of figures I’ve heard mentioned put it in the range of 5-8% of newborns that are admitted to NICU, but many of those may only be for a few days, maybe even a few hours. I wonder what the percentage of newborns is that enjoys the NICU hospitality package for more than a month? More than two months? Not that many I suspect. Regardless, when you combine a handful of parents who have had a baby in NICU with a few good friends (and family) who know when to give you space, it is very easy to create a good support network for yourself. Just remember that for it to be of any use, you need to reach out to someone and start talking to them.
The First 6 Weeks 