Today, November 17th is World Prematurity Day. BLISS, a charity close to our hearts (their mission is to ensure that every child born sick or prematurely in the UK is given the best chance of survival and quality of life) are raising awareness using the hashtag #prematurityis and so here is our blog, in honour of this day that we will always hold so close to out heart, and here is what prematurity means to Team Austin & Rory!
#prematurityis never experiencing the third trimester of pregnancy, those movements, those big kicks where you know for certain that’s exactly what they are. In the early days I couldn’t look at a heavily pregnant person. I couldn’t be around them, attend the baby showers, share my experiences like friends do when they are of the baby-making life stage. Because, well…..my experiences just don’t match up. Now, I have been able to channel my experiences and feelings in a positive way and actually look at it differently. I have two friends at present, good friends, who are in their 3rd trimester (roughly) and I love that I know what their baby looks like, how big they are and what they can do, because I have seen the miracle of life at that stage – on the outside, in my womb with a view and that is an absolutely great experience that I have taken from our journey.
#prematurityis never attending the parent classes because you gave birth before they took place. I remember however that we had booked onto a multiples parenting class which was being held at Jessops and so we decided as we were in the hospital with A&R, to still attend. Looking back, it wasn’t really a good choice, it wasn’t particularly helpful sitting in a circle of other couples with their third trimester bumps, not even knowing if our boys would ever make it home, talking about what to pack in a hospital bag, their birth plans and how to survive the early days with their full term babies when we didn’t know if we would ever have to consider sleep routine or how to feed two.
#prematurityis having all of your birth plans taken away, there were no nice moments in our birth, there were around 20 health professionals and everyone was fearing the worst. It was chaotic, there were machines, alarms, lots of talking and medical jargon, the boys were born and taken away and I was whisked into theatre. It was all a ‘needs must’ and i take from it nothing but a numb and empty feeling.
#prematurityis not having that magical moment after birth when the nurse hands your baby to you for a first cuddle, setting your eyes on them for the first time and instead not even seeing them at all, the Drs whisking them away to put them in a tesco food bag and putting them straight on the ventilator to stabilise them, and then seeing them in an incubator covered in wires and monitors and breathing equipment 6 hours later.
#prematurityis not being able to hold your babies for 17 days after giving birth for risk of putting their life in danger. Ill never forget that first hold with both my boys. Here is a video of that very moment…
#prematurityis trying to find the words to share your news with family and friends but not knowing whether to celebrate their birth for fear of them not surviving. Here was our facebook post…
#prematurityis being petrified of holding your baby for fear of disconnecting a vital wire.
#prematurity is not being able to hold your baby every day for fear of infection, or because keeping them inside the incubator is more ‘natural’ for them as they should still be inside. Too much handling is not always best.
#prematurityis knowing that coats and jewellery harbour germs. I still think it now when someone comes to our home – leave your coats at the door. Only recently have we ditched the anti-bac gel at the door. Even A&R used to do the ‘wash your hands’ signing when someone arrived.
#prematurityis spending months sat beside an incubator but finding happiness in those moments. Your normal. Our little family together – literally nothing else mattered outside of that NICU ward.
#prematurityis learning to change nappies around wires.
#prematurityis learning what all of the wires and machines and numbers mean. Knowledge was power for certain. Power to control the anxiety and the worry.
#prematurityis celebrating every single little win. From the first 0.01ml of breastmilk to the first poo, the first bottle, the weaning of oxygen to each and every hour they managed off the ventilator.
#prematurityis express breastfeeding even though breastfeeding wasn’t your plan
#prematurityis your husband catching every little droplet of breastmilk in a syringe in the hope that you can catch those ‘good bits’ for when your little ones are strong enough to have their first feed. You would do ANYTHING to help.
#prematurityis cherishing every nappy change because that is the only time your skin may touch theirs in a day.
#prematurityis rubbing your breastmilk on your preemies gum with a cotton bud because they aren’t big enough to feed yet.
#prematurityis spending hours in a cupboard pumping your breastmilk so that you can tube feed your little one. I even sat beside their empty cot when I was at home, every 3 hours and pumped, carrying my milk all labelled up in a freezer bag to the hospital, proud as punch that I was doing something for my boys.
#prematurityis agreeing to use donor breastmilk because you can’t get enough and your little one is too small for formula. Fed is best yeah?
#prematurityis listening to a group of doctors discuss your childs medical needs every day. Simon Clarke – you are still such a huge part of how I managed my emotions in those early days. I carry with me many of your mantras even today!
#prematurityis your childs first roadtrip being in an ambulance to a different hospital Embrace are awesome – travelling in a rocket with ear muffs when the boys were so tiny. Can’t wait to share this with them…
#prematurityis hearing the beeps of the machines in your sleep, even now.
#prematurityis recording every feed, every ml of milk, every nappy change. Living the first 99 days in such a military manner than even now, recording feeds, oxygen levels, temperature, respiratory rates, nappy changes by the clock…
#prematurityis a womb with a view. An introduction to parenting like no other.
#prematurityis waiting months for the first bath
#prematurityis being obsessed with germs
#prematurityis not being able to share your bundle of joy with friends and family. Some family members hadn’t met the boys until their baptism and first birthday party when they were 12 months old. That is why we had such a huge party for their first birthday and again for their second, also to mark the end of the hibernation period where we stayed inside for winter. Perhaps next year we will have something small. what do you think?
#prematurityis raw hands from excessive hand washing and anti-bacterial gel. I still struggle with this now. I can’t wear my wedding rings because of how sore my hands are almost 3 years on.
#prematurityis missing out on all of those early day normalities and instead replacing them with the magic that happens in nicu
#prematurityis up to 50 medical procedures every single day, including hourly blood gases where the nurse pricks their feet and squeezes blood out to run tests. Is there any wonder A&R don’t like their feet touched or Clarkes shoe shop visits.
#prematurityis building a new family of doctors and nurses with whom to share those early days with, because nannies and grandads and aunties and uncles can’t be around.
#prematurityis sneaking back to the hospital in the early hours when it is quiet because you can’t sleep for thinking about your little treasures, just to stare at them through the incubator, listening to the machines beeping.
#prematurityis those just in case ‘tiny baby’ clothes you bought not fitting them until they are 4 months old. Here is a picture of our first clothes, to tiny baby clothes to newborn size. Look how small we were.
#prematurityis being the size of a hand gel bottle. a bottle of coke. Our hand being the size of daddys fingernail.
#prematurityis leaving your babies in a hospital every night and going home without them.
#prematurityis leaving someone else to care for your babies because you physically can’t
#prematurityis throwing your finances into the air because maternity leave and returning to work just don’t quite go as planned.
#prematurityis spending your maternity leave by an incubator.
#prematurityis daily nurse visits even after you get discharged home. more blood gases, more blood tests…
#prematurityis hospital admission after hospital admission long after you have made it home, because their bodies are still underdeveloped or carrying scars of prematurity.
#prematurityis more diagnosis’ long after discharge – missing kidney, subglottic stenosis….
Hospital appointment after hospital appointment.
#prematurityis having to miss out on baby groups, play dates, birthday parties for fear of being seriously ill afterwards.
#prematurityis spending days and days inside hiding from cold, damp weather.
#prematurityis having to explain every time someone asks how old they are.
#prematurityis the constant worry every time they catch a cold.
#prematurityis chronic lung disease, collapsed lung, collapsed windpipe, missing kidney, tracheostomy.
#prematurityis development delay.
#prematurityis the constant fight for support, fight for a normal life.
#prematurityis giving up all of me to give everything to them!
#prematurityis a huge battle. Here is what it looks like for us…
#prematurityis not just about being born early, being a small baby, just needing to grow. For some it is, but we were extremely premature at 26 weeks gestation and for us it was and still is (2years and 10 months later) a constant battle.
This is what prematurity is to us. It has taken our life and turned it upside down. From it we take the positives. How many people can say that they saw the third trimester happen in front of their eyes – a womb with a view? Now that is something I can share with you another day.
What does prematurity mean to you?