Being a parent to babies in NICU is the most terrifying experience and also the most isolating.
It was terrifying because we truly just did not know if our babies were going to be OK. Being twenty three weekers they had complicated health issues. They had compromised lungs- machines had to literally breath for them for a very long time, and there were times when actual resuscitation happened. They had compromised brains with JoJo having a grade three brain bleed. They had complicated hearts, they both had holes in their hearts that we had to wait and see if they would close over if not its surgery. They had compromised skin that was tissue paper thin that the mere touch could peel it away. They had compromised stomachs; their tiny stomachs were too immature to digest milk and they would writhe around in pain. They had compromised eyes, as you can see from photos of the early days they were born with their eyes fused shut, you are waiting waiting for them to open their eyes but you are also terrified “Its too soon! You’re not supposed to see the world yet!! You should still be safely tucked in my womb!!” and once those eyes open then begins the weekly eye checks to check for retinopathy of prematurity which can lead to blindness.
So, there’s no “congratulations!!” “You have had two beautiful boys!!” there’s no extravagant gifts, no visitors, no family members taking over for a couple of hours so you can have a luxurious lay down. There is just you and your partner clinging to each other for dear life. There is just that pure fear that is icy and makes its way through your entire body so that you are frozen. You are literally frozen in fear. Every time your phone rings your stomach drops, you shake as you answer it, you stutter “huh huh hello?” terrified about what the hospital is going to tell you. Terrified over what’s gone wrong now? Terrified they are going to want to have that ‘talk’ terrified you will have to make a decision to pull your babies off life support. And then at the back of your mind in the deepest darkest place there is a tiny voice that pops up every now and then and says, “but even if they do make it Lucy, are they really going to be ok?” and you push it down down down. I will have to face that when I come to it. Right now, all I have is today. Today they are alive. This minute. This second, they are alive.
So without meaning to we totally isolated ourselves. We had no room to think of another human being. There was no room for anything else. So, if we came home and there was only one piece of cold pizza left we shared it falling into bed. Did the bills get paid? We don’t care. We can deal with later. Did I reply to my best friend’s text? I can deal with that later. Lawn overgrown? Who cares. Do we have clean clothes? Deal with it later. Did I thank Tim and Sarah for the beautiful flowers and kind words? Deal with it later.
The day started rushing to hospital checking my phone every five seconds for any news from the hospital. Running into NICU in time for the doctor’s rounds. Listening our hearts dropping. Our minds exploding, only to be interrupted by my pumping alarm. Pump. Sit with the boys. Find out as much information as possible. Pump. Ask a million questions. Pump. More sitting staring at our boys in their clear boxes. Finally go home for dinner order takeaway pizza third night in a row. Who cares. Pump. Fall into bed. Wakeup at midnight to pump again. Mind racing with a million questions a million scenario’s. Finally get to sleep at five am only to be woken by my pumping alarm at six………and then it just started all over again. Just like that. Day in Day out. That’s why it’s called the NICU Groundhog Day…..until well, the changes happen and you finally finally get your little NICU wins.
One week after the boys were born I was allowed to leave hospital. I was excited to leave. I was eager to get out but as anyone who has been in hospital knows, it took a good three hours after the news to be formally discharged. I felt like I had not been home in forever. I was beyond ecstatic to see my fur baby (a spoodle- Murphy) In all the excitement I didn’t stop to think exactly what that meant…
The huge glass sliding doors opened and I stepped outside to the front of the hospital and it hit me right in the guts like a ton of bricks. Right through my heart. This wasn’t supposed to happen. This was not supposed to happen. I was going home. But all my children were staying. Two fighting for their lives in the intensive care unit and my baby girl in that cold room with all the dead people. This WASN’T SUPPOSED HAPPEN. I felt like I was going to collapse. All around me it seemed like there were happy family’s taking their newborn babies home. Suddenly their seemed to be happy pregnant women everywhere with their doting partners leading them like they were as fragile as glass. I started screaming. Literally. I started wailing. Literally. I stood there in hysterics while the hospital world just moved around me. Hysterically wailing, waiting for Daniel to bring the car. Hysterically wailing like my daughter had died. Hysterically wailing like I didn’t have my precious babies to take home.
The whole car ride home it was just leading me further and further away from my babies. It was like being punched with brick after brick after brick. We were home. I started shaking. I didn’t want to go inside. How was I going to face the baby things? All the beautiful tiny precious clothes I had bought in my excitement. How was I to face those tiny beautiful dresses I had bought for Olive. I took a deep breath and forced myself to the front door, even though I felt like I could have happily spent the night camping out front in our car. I opened the door and first thing that hit me was how pretty our house is. Now our house isn’t super fancy or Pinterest worthy or anything like that, but after spending so much time in hospital which is factually ugly, being surrounded by my beautiful artwork and our bright sunny house was like walking into the Taj Mahal for the first time. The second thing that hit me was that there was not a single baby item out. My sister and Mum had kindly come over and put every single baby item into the nursery and firmly closed the door. I quickly collapsed into our dreamy bed and felt like I could sleep for a very long time.
Waking up was the hardest. I would wake in a panic and think did I dream it? I would touch my swollen sore stomach and that sinking feeling would wash over me. No Lucy you are no longer pregnant. Yes Lucy Olive has passed away. Yes Lucy your boys were born five hundred grams and are currently fighting for their lives in neonatal intensive care unit. And so, began the NICU Groundhog Day.
A nurse said to me at the beginning of the boys NICU stay “Buckle in because you are now on the biggest rollercoaster ride of your life” How right she was. There were the most exhilarating highs where you could actually see HOPE followed by incredibly intense lows which is where my wall bashing and screaming came in.
Right at the start time felt like it was in the birthing suite, where every single second counted, we were living completely moment to moment every minute was a victory. I have never lived my life in such an intense way. Your appreciation of seconds when it means life and death is phenomenal.
My boys were right in the middle of NICU right next to the nurse’s station. They had one Nurse each. You know it’s serious when your boys are in that position. They started their life in their incubators, wrapped in plastic, under little heat lamps for their jaundice, they wore tiny little eye masks, they had wires going through their belly button as they were too little to put any into their veins, they had little wires attached to their chest which measured things such as their heart rate, they had a tube going down their lungs which actually had to manually breath for them, they didn’t even wear a nappy in the very beginning as their skin was so sensitive it could tear away with the slightest touch, they didn’t get fed-their tiny tummies were far too immature, and of course we could not touch them. In fact, it was a very long seventeen days until I could hold one of them.
Such extreme premature babies will actually lose weight in the first couple of weeks because they can’t be fed. I can’t remember how much weight the boys lost but they got below 500 grams.
I was still in hospital recovering from my caesarean and just having my infection markers checked on, which were coming down (yah!) The milk pumping had begun, which was a bizarre situation, sitting at the milking machine pumping away like a cow when two of my babies were in neonatal intensive care and my other was in the morgue. I had actually been given a private room with a balcony which was lovely but it was that moment I realised life had just continued despite my daughter’s death. When I was alone I could not stop crying. It felt like I would never be able to put back the pieces of my broken heart. I was worried for the boys. I knew what losing a baby in NICU was like. I had moments of realisation when I realised I might go home with no babies. I thought how could life be so cruel to bless me with triplets and not be able to bring any home? My hysterectomy was looming. I had been forced to be so strong this whole journey, but I knew if I left this hospital without my boy’s whatever strength I had would just shatter. Daniel came and wheeled me outside for the first time. I had not had fresh air for six weeks- seems like such a small amount of time! But I had not felt the sunshine on my face. Everything seemed so bright and beautiful. I remember saying to Daniel everything moves so fast!! LOL
The Neonatologist who started our journey with us was incredible. She spoke to us in such a soothing matter of fact way, that just made you feel like she had it all under control. She explained everything that happened and was patient answering all of our stuttered repeated questions over and over again. I was so grateful for her. But at the same time, you are trying to wrap your head around these really severe complicated medical issues.
On admission and during their stay the complications read like this-
Respiratory distress syndrome
Unconfirmed congenital infection
Persistent/patent ductus arteriosus
Apnea of prematurity
Chronic lung disease
Retinopathy of prematurity
Unconfirmed acquired infection
Rickets of prematurity
Intracranial imaging abnormality
Acquired urinary tract infection
Central venous catheter sepsis
Non-birth related skin and integument Injury
I promise in another post I will break down these complications for you. Why do I write them here now? I guess it’s important for you to know that at 23 weeks’ gestation it is well and truly the grey zone. No one can tell you the outcomes. No one has a crystal ball (if I had a dollar for every time I heard that) Before my boys were born they were given a 20% chance of survival. Yet I knew in my bones that I was being told to fight for these boys- so we did. But it has been the most complicated heartbreaking journey of my life. As a parent, you are always doubting yourself. But I will never ever doubt the decision to fight for my babies….
Triplet B and C were born on the 19th August 2016 via caesarean. Triplet C is Atticus James and B is JoJo Hendrix. They tried to get JoJo first but he was just to stuck and far far too tiny. So, Atticus came first followed by JoJo.
When they pulled my little Atti out he let out the sweetest little cry and I just knew he was going to be ok. I mean I didn’t think a baby born at 23+5 weeks gestation could even cry, and it was the only “normal” part of my labour and I will be forever grateful for the memory.
Atticus’s weight at birth was 550 grams and JoJo was 530grams. Yes, they were tiny. Really tiny. They basically weighed the size of a stick of butter. But my god did they look huge in comparison to Olive. Their bodies were far more advanced. When they say EVERY day counts in utero they REALLY mean it. I saw it firsthand. We were so lucky I was able to keep them in for that extra week.
Post birth was hard. I was mourning Olive. I was in total body/mind shock over the last month. I was in total shock over the boys. When I fell pregnant I never thought I was going to have extreme premature babies. I didn’t even think it was possible that a baby born seventeen weeks early could survive.
They were in their little incubators. Just lying there. So, tiny. We could not touch them. They had a million wires going into their belly buttons. Once again, the terrifying chorus of alarms that was hooked up to them seemed to screech across the unit. They were under these little lamps for jaundice with these teeny tiny little eye masks on. They had a tube going into their lungs that manually “breathed” for them.
To say that it was terrifying is an understatement. I was frozen in fear. I also felt intense guilt. Guilt that my body was relived. Guilt that I may have caused this. Guilt over what I (semi) knew they would have to endure. Guilt over what their future held. Guilt that I was clearly NOT providing their best lived life. Guilt that I was so fucking helpless. I was so helpless. I felt like such a silly giant oaf. All I could do was talk to them. All I could do was talk. Pray. Hope. Reassure them that I am still here.
For six days, I was in labour with triplet C. After Olive’s passing the labour really started to get serious. I kept getting sicker and sicker. I would get tiny catnaps of five minutes, but apart from that I could barely sleep because of the contractions. I was hooked up to IV penicillin, magnesium sulphate, hydration, and pain relief. It felt like every 15 minutes I was taking huge antibiotics. Upside down. At one point, they had me on a birthing bed upside down for 24 hours. Hooked up to magnesium sulphate for 17 hours. Magnesium sulphate is important for preemie baby’s neurological development so if they can get it in before a premature delivery then they certainly try, but my god the stuff is horrible! It gives you hideous hot flashes and seriously makes you feel like you’re going to do one big poo right there in front of everyone while your arse is on fire.
About day four I turned to Daniel and said I think that a sadistic puppet master was playing with me- that’s how out of this world it felt. Poor Daniel he just didn’t know what to do, he paced around while I moaned and groaned. He kept checking my catheter bag and making sure I wasn’t dehydrated. At one stage, he went to go get something from the vending machine and came back white as a ghost. He had walked past this little glass room full of doctors with my name written in big letters across the top of a whiteboard. With nothing written underneath. They were standing there very sombre, scratching their heads.
The contractions were getting worse and worse and little triplet c had moved into Olive’s spot. They decided the time had come to give birth to him and to try and leave triplet B behind. The neonatal team were called back in. We tried and tried and tried. I kept telling them he doesn’t want to come. He doesn’t want to come. This time it’s different. But still we tried and tried and tried. But I was right little C-man did not want to come into this world yet. He got breech. They could feel his little shoulder it was not going to happen. So, they decided to give me a break. Hoping that he would move back up into a better position. The obstetrician told me- I’m going home now to sleep, but I’m not abandoning you, I’ve given strict instructions to staff to call me as soon as something happens.
I kept getting sicker and sicker. I was totally out of it. I started throwing up green. There was green discharge. I felt like any second green was just going to spurt out of every orifice in my body. My infection markers were checked and that poor obstetrician was called back.
She came in, took one look at me and said we need to get to theatre NOW. I now had no control over the pregnancy. I couldn’t keep my babies in any longer. I knew my body actually couldn’t take much more- it had been pushed to its furthest capabilities. Daniel was thrown a set of scrubs which he immediately started posing for photos in LOL. Within ten minutes I was being rushed down into theatre. The obstetrician turned to Daniel and gave him the stark reality – You might be the only one to come out of this alive.
I’m not going to share Olive’s passing with you. Except to say she passed away in my arms while I sang to her. They weren’t going to let me sit up. I screamed. They let me. It’s a very precious memory and one that belongs to Daniel our beautiful Olive and myself. I like that. I like that it is just our memory. It’s sacred.
I will say that the pain of a death of a child is like nothing else I have ever felt. Its like I have a huge scar running from my face down the entire length of my body. But you can’t see it. That scar can crack open at any time and all the sadness and love I have for her comes gushing out. I could be in the supermarket passing crappy children’s lunch box items and crack I am a mess. I see a tiny female toddler with hair similar to how mine was and crack I am a mess. An AD on TV crack. Someone mentions my boys are twins crack. The colour pink crack. Coming across Beautiful baby girl’s clothes. Crack. Every day for no reason. Crack crack crack crack CRACK.
When it was all over. When the boys were born and I was allowed up to the postnatal ward with a balcony and fresh air. I remember the first time I woke up in that room. I was alone. There was a construction sight out my window and people were busy working and I couldn’t believe it. I couldn’t believe that people were still working. I couldn’t believe that the world didn’t stop. My daughter had just died and you just go about your day as if nothing has happened? I could NOT believe that the world did not stop for my Olive. She deserved the entire universe to stop. I was so angry so sad. This poem I learnt in acting school came to mind in that exact moment, and I finally understood it. Like really understood it. So I give you that poem. It says it all. And Olive Louise my love for you knows no bounds, I hope you feel it.
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
scribbling on the sky the message ‘He is Dead’.
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong.
The stars are not wanted now; put out every one,
Pack up the moon and dismantle the sun,
Pour away the ocean and sweep up the wood;
For nothing now can ever come to any good.