As told by mum, Melissa.
At twenty weeks pregnant we were excited for our first real growth scan and to find out the gender of our baby. We had planned to have lunch and open the envelope together. I vividly remember the scan taking forever. Seeing the sonographer go over and over the long and short bones to measure and check and take photos on the screen. The look on her face as if something was wrong and to then leave and return with a more experienced colleague to tell us that during a scan they noticed our baby was in the lower 3rd centile. The Sonographer was unable to provide any more information, we both left confused and wondering what on earth it meant.
We travelled to a local cafe and sat there….wondering why this was happening, this hadn’t happened to anyone we knew of. We sat there staring at the white envelope we had been handed about the gender of our baby and opened it together.
That afternoon the excitement of finding out we were having a little boy quickly became overshadowed by worry. Not knowing what had caused his lack of growth we were referred onto CHCH women’s. We were warned from midwives that it could be a range of various syndromes and growth concerns and to expect potentially the worst. We later received a call from the hospital for an appointment and had a long two weeks wait.
The week before Christmas we were in for our first specialist appointment and to our relief we were told all seemed relatively ‘ok’- His growth and blood flow would need weekly monitoring and I would need to start taking calcium tablets and aspirin to support his growth and blood flow. We were also told that due to his size the possibility and likelihood of a natural birth was out of the question and they would do their best to try and keep him in until 26 weeks.
Each week we would walk back to the hospital and sit there thinking about the possible outcomes and hoping that today wouldn’t be the day they would say “Ok Melissa, he’s not growing anymore we need to get you into hospital today!”
All was progressing really well until the first week of March. I began having pains in my upper chest, I was having difficulty breathing and my nausea had returned much worse than before. Drs at after hours believed it to be caused by biliary colic – gallstones. I went to my Dr just to be sure and was referred onto a scan to check my liver and kidneys. The scan was extremely uncomfortable during which they found one tiny gallstone and a large amount of fatty deposits on my liver.
That following Monday I was back at the hospital for another growth scan. Still uncomfortable, I told the specialist what had happened and I was urgently sent for blood tests to check my liver function and other things. I remember her saying “You shouldn’t be that uncomfortable and that short of breath from one tiny gallstone.” “Fatty deposits on your liver…hmm.” They couldn’t seem to get enough blood and really struggled to find a vein. All the rest seemed to be going fine and we booked in for our next specialist appointment the following week.
That evening we attended our first Antenatal class. During a break I noticed I had several missed calls from the hospital, my midwife and the maternity ward. I was to immediately go into the hospital for further checks. I shouldn’t worry as I wouldn’t likely be admitted. We awkwardly left halfway through the session apologising and ensuring everyone “We’ll see you next time, everything is ok, we just have to leave early.”
At 8:30 pm we arrived at the hospital, my bloods were taken and I was strapped to the CTG machine (I later came to despise
this damn thing!). At 2am I was given a steroid injection. My blood pressure had started to become very high and they began watching me for preeclampsia symptoms and I was admitted. It still hadn’t occurred to me that I wasn’t very well or that our little guy would be coming any day.
That week I was under constant checks, daily monitoring on the CTG, blood test etc. Things were looking up. I hadn’t developed any preeclampsia symptoms, my blood pressure, while still high, had stabilised and we were told we could be going home on Friday.
On Thursday everything changed. We were told I was to have a C section the following day, his movements had started to slow down on the CTG and the drs had started to become a little worried. Overnight, I began getting terrible pains again, I struggled to breathe and was vomiting. My bloods were taken again and it showed my blood platelets had dropped incredibly low and my liver function was severe. I was rushed in for an emergency C section at 4am. I was told that if it had been left another hour they couldn’t have operated. I honestly didn’t realise how sick I had become and was so thankful the midwife at the hospital decided to take another blood test!
The nurses helped me to call my Husband (Patrick) and my midwife and they managed to get to the hospital in time. Looking back I was so thankful to have their support in the room.
Patrick and I were warned to prepare for him to arrive, possibly limp, needing resuscitation, wouldn’t be crying and I would not
be able to hold him after delivery, he would be rushed off by NICU staff in an incubator.
On Friday 13th of March at 6:03am via Emergency C Section Felix arrived crying on arrival at 32+2 weeks weighing 1500g, 3.3 pounds. I was diagnosed with preeclampsia and severe HELLP syndrome. It was a long week to be discharged from the hospital, as I remained on a magnesium sulfate drip for over 72 hours and had one to one nurse care as they were concerned I would have seizures and my blood pressure and liver function hadn’t sorted themselves out.
My first time holding Felix I was in a hospital bed, attached to monitors and drips. Most of it I don’t remember and many of the photos I am struggling to keep my eyes open.
Felix was in Christchurch NICU during the height of the COVID lockdown. Restrictions were placed on visitors and only one parent was allowed to visit at a time. Making it incredibly difficult for us as a family to share any special moments together. We would take photos and videos to send to each other while at the hospital or to show one another when we got home from our visit for the day. Leaving Felix and returning home each day was an incredibly strange feeling.
For his first few days of life Felix was on CPAP breathing support. After that he was able to breathe by himself and didn’t require caffeine until a few weeks in where he had difficulties breathing again and was setting off the monitor.
Over the coming weeks we moved from Room 1, to Room 4 and then finally Room 6. He was doing so well and making great progress. The prospect of going home seemed to be closer and closer each day.
On the 29th March he moved into a cot from his incubator and was able to wear clothes and be bathed. I was the only one able to be there for this milestone so I sent photos and videos to Patrick at home.
On 5th April Felix started to go down hill. He had a high fever and was having difficulties breathing. He was moved back into an
incubator and back onto all monitors again. They inserted an IV line to provide him with extra fluid and antibiotics to help battle whatever it was that he was fighting. After numerous tests they still were unsure what Felix had. He was moved into isolation in a room on his own, onto high flow breathing support and was tested for COVID. He remained in isolation for what felt like the longest day and we waited and waited for a clear result. To even go near him I had to wear full PPE attire. At 5pm we received the wonderful news that he didn’t have COVID, but that he had late onset Sepsis and a UTI that had caused some swelling of his kidneys. Felix was to remain on antibiotics until well after being discharged and he was big enough for a procedure to check his kidneys.
Felix began to recover and we slowly made the crawl back through the rooms, from the highest needs of Room 1 to Room 6 where the journey to home was completed. Felix’s breathing became more stable and he was taken off the caffeine. Breastfeeding soon became easier and he was no longer setting off the monitors and could feed for a longer period.
Our final overnight visit ended up being our journey home. Felix had been waking for all his feeds and hadn’t needed to be tube fed for 24hours. Doctors finally gave us the go ahead and said we ‘could’ be going home tomorrow. We passed the car seat trial. Our final weigh-in was that evening and Felix had lost 20g since his last. There was soon talk that we may not be able to go home and it would depend on what the Drs said in the morning.
That night was the first night I had him all to myself. He was off the monitors and was allowed in my room in his cot. I only had to call the nurse and let them know he’d woken for a feed, his nappy had been changed and what his temp was. I don’t think I slept a wink…
That morning Felix was weighed again and luckily he hadn’t lost anymore weight and remained the same. From there the day was a complete blur……we were finally discharged and able to go home!
The country was still in lockdown but as it was Alert Level 3 we were finally able to join our bubble with my brother and his family. My brother picked us up from the hospital as we hadn’t had the opportunity to purchase a capsule for the car yet. They were the first family members to meet him outside of an incubator and give him a cuddle.
Felix was in NICU for 52 days. From March 13th to 2nd May 2020. He was due to be born on the 6th May 2020.
Since being home Felix has put on weight at every weigh-in, he is still low on the Plunket charts but growing steadily. Is meeting most developmental milestones for his actual age and has been cleared of any kidney issues thus far. He really has such a drive to do things and is an extremely fearless and determined little fighter and I’m sure will set his mind to whatever goals he wishes to achieve.
After some struggle with my milk initially, I was extremely lucky and worked extra hard (with all of the power pumping) I produced over and above what Felix needed. I was fortunate enough to be able to donate milk back to the Milk bank for a number of weeks after returning home for other babies in the NICU. It felt so rewarding to be able to give back as we desperately needed the donor milk for Felix in his first few weeks in hospital.
This has been quite the journey for our first child and one that has not been easy. It’s hard to believe that Felix will be a year old on the 13 March 2021! It still all feels like such a blur. There have been many highs and lows along the way and although 2020 was a year of lows for many it brought us our little guy and we couldn’t be more thankful and happy.
Although at times being in NICU was difficult to say the least we were incredibly lucky to have had the wealth of knowledge and hospital care from the Neonatal Unit here in CHCH, without it our little guy wouldn’t be here.
So thank you to all the staff who care for the babies in Neonatal Units. You are true gems!
***** Thanks so much for sharing Melissa *****
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@littlemiraclestrust.org.nz
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- The Little Miracles Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
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