Unfortunately I don’t have a magic wand, time machine or crystal ball so that I can tell you everything will be fine. The hardest thing about your baby being in NICU is that no-one can tell you what will happen tomorrow or next week or in a month’s time. Every journey and story will be unique and that is why I haven’t tried to describe everything that we’ve been through – because it won’t help to prepare you or allow you to anticipate what might happen.
However, there are few messages and phrases I would like to reiterate. Some of these are my own, others are things the nurses and doctors have said that I feel I didn’t take much notice of at the time but that are very true.
The first thing I would want to say to anyone walking in to NICU with their baby for the first time is that you need to celebrate and focus on the progress your baby makes. Try your hardest not to dwell on the 1 step backwards that will inevitably follow every two or three steps forward.
Secondly, the first 2 weeks are likely to be the easiest 2 weeks you get in NICU; the “honeymoon period”. For me, weeks 3 to 6 have been an emotional roller coaster of monumental proportions that nothing could prepare me for. I’m not even sure that I can say the highs have outweighed the lows. Yes, getting to have skin to skin care with one of my daughters has been amazing, but not being able to hold my other daughter at all for 6 weeks is indescribably hard. Not knowing if I’ll ever be able to hold her…
We were fortunate that the NICU our daughters were in started a diary on the day of their birth that we can write messages in, stick photos in and even get little messages back from our daughters (we know it’s the nurses really) telling us how they’ve been while we’ve not been able to be there. I felt a bit daft writing in the diary at first, but it has helped immensely and has allowed us to record the achievements each daughter has made. It also helped me to express how scared I have been at times and that has helped me to deal with the situation rather than bottling it up. If your baby doesn’t have one of these, ask the nurses if they can provide one or pop to stationary shop and pick one up. You don’t have to share what’s inside if you don’t want, but letting my wife read what I wrote has helped her to understand how I was getting on when I couldn’t find the words to tell her.
Communication between you and your partner is important and don’t underestimate how strained things may get. Whilst we didn’t argue, my wife and I have had a couple of “disagreements” about how we should go about being there for our daughters and unfortunately these needed a bit of tough love to demonstrate each of our points of view. Feel free to tell friends and family whatever you like, but make sure that you are always honest about how you feel and what you’re thinking with your partner. Even if that means sending text message in the middle of the night for them to read the following morning. At least they’ll understand if you seem a bit off and will be able to keep an eye on you in case further assistance or support is required. Don’t forget that this works both ways and it will help you to keep an eye on your partner.
Try and find out what support services are available at the hospital your baby is in. Many hospitals will have a chaplain and or a psychologist that works closely with the NICU and these people will understand the terms you keep hearing and be able to offer support. Even if, like me, you just sit there and ramble on about everything for an hour. Having a knowledgeable ear listening to me helped and the fact that they understood the terms I was using helped the flow of what I was saying allowing me to get things off my chest.
Something that I have found harder than I was expecting was updating and even interacting with family and friends. The first thing to bear in mind is that they will have no idea what to say and often that means they say the first thing that comes to mind. Whilst I am sure everything is said with the intention of being positive and supportive, I’ve found myself having to bite my tongue on a number of occasions. An example of this being get her sister “to give her some pointers on this breathing lark” after we told family members that one of daughters was struggling with her breathing while her sister was improving. Additionally, I suspect that you will have made the decision to not tell family and friends every little detail of your baby’s condition. My wife and I held back some fairly significant elements for a number of weeks. We’re not sure if this was because we didn’t want them to worry or if we didn’t want their opinion and unhelpful comments in return. However, after speaking to one of the psychologists and reading the Tommy’s “Having a premature baby” book we changed our approach and sat down with everyone to clearly set out what we felt we needed from our family and friends, how they could support us and what the current, fullest update was with each of our daughters in turn. Since then, we appear to have locked horns less and they are more understanding when we ask to have space or time to ourselves.
I’ve also felt very limited in what I feel I can do to support my wife and my daughters since their birth. I can’t express milk for the girls and for a while we weren’t allowed to touch them or change their nappies. After a couple of weeks, we were both allowed to start changing nappies and comforting holding our children and we both found these moments to be very special and quite rewarding. Away from the incubator, however, I can also support my wife and daughters by helping to clean and dry the breast pump kits, making cups of tea while my wife expresses. I don’t think of them as a big deal or being difficult, but it one less thing for my wife to do and I feel useful.
Finally, don’t forget to look after yourself and your partner. Make sure you eat well, drink plenty of fluids (we’ve started taking bottles of water on to the unit because it’s so warm) and try and get all the rest you can. I know the feeling of wanting to sit and watch your baby all day long, but there comes a point when even sitting there becomes a drain on you and your ability to concentrate. Don’t neglect your needs during the times when your baby is settled and take the opportunity to see a change of scenery, grab a coffee or even take a nap. This includes putting yourselves first over the constant requests from friends and family members to visit your baby. It will take more out of you than you think to play host to family members wanting to visit your baby so try to be sensible about how many people you invite at one time and don’t be scared to hide behind the unit’s visiting policy if you’re feeling pressured and never think you can’t say no to someone – even if it’s your mum.
I’m sorry I don’t have the answers to all of your questions, but I am hoping that these pointers will help you to look after yourself and your partner which will in turn enable you to celebrate every little achievement your baby makes during their time in NICU.
The First 6 Weeks 