A phrase we’ve heard a lot from people since our journey began is “I don’t know how you’ve coped” or “how do you stay so strong?”. I never knew quite how to respond to this, as to me there was no real choice, falling to pieces is not an option when you have a baby who needs you, we had to be strong for Henry. Recently I read a quote from good old Bob Marley that summed up our response perfectly:
I won’t tell you the situation has not been difficult. Going into labour at 23 weeks is not what we had planned, I lost half of my pregnancy and we lost one of our beautiful twin boys, Henry lost his brother and we also lost the idea of having twins, something we had been very excited about. That said we always tried to focus on the positives; when I was in labour we were told “it would be a miracle if the babies survive the birth” and they both did, “it would be a miracle if they survived the journey to the next hospital” and they both did, finally “it would be a miracle if they survived the first 24 hours” and they both did. We were blessed with a lot of miracles that day and for that we are truly grateful; things could have been a lot worse. Despite the devastation of losing Archie we are still thankful that we had him for two days, we are thankful that Henry had his brother for two days and we are thankful that he beat the odds for two days.
Moving on, when you have a baby in intensive care people will tell you that it will be a “roller-coaster” and that it will often be “two steps forward and one step back” or vice versa but you never appreciate the truth of these words until you are really riding that roller-coaster and you are immersed somewhere in the middle of the corkscrew looking down! The best way we found to cope was to take each day as it comes and nothing else, to not think of tomorrow and not think of yesterday, just focus on the current day and when it’s a bad day take it hour-by-hour or minute-by-minute. Allow yourself to be happy when you get to the end of the day and you realise “today has been a good day”. Keep a diary, this really helps to reflect and helps you focus when times are tough, looking through previous entries will remind you that it’s not always bad and that you’ve made it through bad days before.
I’m not going to say “don’t worry” if you’re in this situation. It’s pointless, you live in a constant state of worry, wondering what is lurking around the corner but don’t worry unnecessarily; trust in the highly trained doctors and nurses, if they say something is of no concern listen to them, they are the experts! There are certain treatments that are completely normal in premature babies which sound worrying at first but are completely normal, such as blood transfusions, insulin and morphine to name but a few. Understanding what is normal will really help those worry levels!
Talk to other parents; whatever is happening with your baby, you’ll often find there is another set of parents in the coffee room who have gone through something similar and listening to their experiences will really help. It helped us immensely and I know we have helped out our fair share of parents too by sharing our experiences, that was one of the main reasons for starting this website in the first place!
Having a routine really helped us too. Obviously there are times when you stretch your timings a little, if Henry was upset or pooped all the way through his clothes just before our leaving time then our routine adjusted a little, but knowing what time you intend to arrive in the morning and roughly what time you expect to leave in the evening helps to give your life some structure, having this consistent routine also helps the nurses to know when you are around and they will leave jobs such as nappy changes for when you are there.
The final piece of advice is going to sound crazy but it is this; enjoy the ride. You are going to ride that roller-coaster one way or another so you may as well enjoy as much of it as you can. Focus on all the positives you are experiencing; the pleasure of watching your baby grow through the stages that most people don’t see. Before you take your baby home you will have received expert advice on tap for a significant amount of time, most new parents don’t have this privilege and are thrown in at the deep end with endless questions and nobody to ask. You will learn lots; my husband and I were fascinated by the machinery, technology and procedures that are carried out, once you start learning about these things they become a lot less daunting. You will meet lots of lovely new people along the way, the hospital felt like a second home to us for nearly four months and the wonderful staff and other parents felt like a second family and we actually missed seeing many of the nurses when we left. Of course it is stressful and of course it is worrying but try your best to take pleasure in the small things when they do happen, it really will help you get through the rough patches.
I hope reading this has helped in some way. If you have been through a similar experience and you have some words of wisdom you would like to share with others please get in touch using our Contact page and I’ll gladly share them below.