NICU little wins

Considering the tone of my blog so far, you would be forgiven for thinking that NICU is a sad, sad, traumatising place-and it can be! BUT every single person that works in that neonatal intensive care unit want you to win. They want you to take your baby home. They want your baby to be a fat healthy normal baby. They want your NICU journey to be as easy breezy as possible. Trust me when I say they have got your back.

 

Because of this want for you, every single little win is celebrated with you. These are those NICU little wins. I never thought an intensive care unit could be so celebratory to be honest! Every gram your baby puts on everyone does a happy dance. Every time your baby progresses to a new breathing machine it’s a happy dance. Every time your baby passes an eye test with flying colours, every time your baby comes off a medication, the first time you can actually put clothes on your baby, your first hold with your baby, when your baby graduates to an open cot its happy dance, happy dance, HAPPY DANCE. I mean what intensive care unit celebrates your one hundred day stay? In most cases that would be a very sad affair but in NICU that’s amazing! One hundred days! Your baby LIVED for one hundred days!!! Your one hundred days closer to GOING HOME!! On our one hundredth day, they gave us a cake, we got certificates, I put balloons on the boy’s cot and when we walked in that day the nurses on duty clapped and cheered for us. It was beautiful. I could truly see light at the end of our tunnel.

 

Now you may have heard me talk about the NICU rollercoaster, for every win you have there can be two, three sometimes even ten steps back. That rollercoaster can be truly terrifying and disheartening. But take comfort in that one step forward. Any step, no matter how little is positive. With Olive, I have to be honest, she didn’t take any steps forward, not even during the “honeymoon” phase. This is when the babies get a rush of hormones post birth that help them stabilise in the beginning, before the real rollercoaster begins. It’s what made our decision to pull life support feel right. With the boys, they had a honeymoon phase. They slowly, slowly, had their little wins. YES those kids had some horrible setbacks. BUT for every set back there was that tiny win.

 

 

On day seventeen of the boys stay, Atti had stabilised enough that I actually got to hold him. I was sooooo scared! He felt so tiny, so brittle, there were so many chords, what if I knocked his breathing machine off? What if I dropped him??!

 

The day Atti got to wear an outfit for the first time I was so excited! I rushed home and went through the hand me downs we had been given. I chose the smallest one I could find, and was so disheartened when it was a giant sack on him!  Another mum in NICU told me about preemie clothing. I had never heard of such a thing!! Someone makes clothes for these teeny tiny babies?! She kindly gave me some of her twenty-three weeker’s hand me downs and they fit! Still a bit big but not a sack!

 

The nurses and doctors who work in NICU are true hero’s. It’s beautiful how they celebrate with you, comfort you and support you. When you have a micro preemie you really get to know the staff as you are in there for such a long time! We had nurses who would go above and beyond for us.

 

So I want to say THANK YOU to all the staff in our NICU. Thank you for supporting our babies as they fought for their lives, thank you for helping us through the decision to pull Olive off life support, thank you for keeping us informed every step of the way, thank you for explaining everything in plain English so we understood, thank you for pushing us to take control of our babies cares, thank you for being there for us through some of the darkest days of our lives, thank you for being so caring not only to our babies but also to us, thank you for distracting us with silly talk when we needed it, thank you for celebrating those little wins with us, thank you for what you do, you are all amazing humans who do such a special job- we are eternally grateful to you all.

Last but not least thank you for organising Heartfelt for us…. more on that in my next post.

 

x

 

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Dad’s first cuddle with A & J
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Atti’s first outfit.
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Atti moves into an open cot!!
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Jojo finally moves into an open cot-he is soooo tiny!
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100 days in NICU
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100 days in NICU
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First time in a pram!

 

 

The voice

Please don’t take my politeness as I’m easy to push over.

Please don’t take my kindness for stupidity.

For I am the voice the only voice for my tiny child you see?

I will be courteous I will have pleasantries

but I need you to stop, listen and take me seriously.

I’m not a fool, I’m more clued up than you realise

It’s better that we work together so you don’t get a rude surprise.

I know you have worked and studied hard to get where you are.

My study has been my tiny babies, I too have worked hard to get them this far.

I am tired, so very tired of this continuous banging my head at your door

there’s still some fight left in me, can you hear me roar?

My child needs support desperately, I’m willing to do whatever it takes

I’ll pay any fee.

All I need is for you to stop. Listen. And take me seriously!!

My children are my world. They deserve the best.

But this system is only designed to test

My patience it’s wearing thin

I can come out fire a-blazing until you’re forced to listen??

For I am the voice, the only voice for my small child with high medical needs.

-Lucy Sutherland 25/06/18

Life In NICU…

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.

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Chatting and creeping on Atti in his clear box.
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JoJo with his little ear muffs on. They put these on preemie babies as real life is to noisy outside the womb! They try and eliminate as much stress as possible!
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Atti just chilling in NICU. As you can see his eyes are still fused shut.

 

Leaving my babies…

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.

 

Atticus James first week in NICU
Atticus’s first week in NICU
JoJo Henrix first week in NICU.
JoJo’s fist week in NICU

 Starting Life in NICU

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-

Apnea

Suspected sepsis

Prematurity

IUGR/SGA

Anaemia

Respiratory distress syndrome

Pulmonary haemorrhage

Unconfirmed congenital infection

Haemorrhage

Hypotension

Persistent/patent ductus arteriosus

Jaundice

Apnea of prematurity

Neutropenia

Thrombocytopenia

Coagulopathy

Chronic lung disease

Retinopathy of prematurity

Gastro-oesophageal reflux

Unconfirmed acquired infection

Rickets of prematurity

Septicaemia

Intracranial Haemorrhage

Intracranial imaging abnormality

Gastric bleeding/melena

Inguinal Hernia

Acquired urinary tract infection

Central venous catheter sepsis

Non-birth related skin and integument Injury

Hypoglycaemia.

 

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….

 

Sometimes you just need to believe in miracles.

 

Getting wheeled outside for the first time since being admitted. That is true fashion right there! 🙂

 

 

 

 

 

The birth of triplet B and C.

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.

 

 

Our long NICU journey had begun.

 

JoJo Hendrix                                    Atticus James

 

 

 

The six day labour of triplet C.

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.