As told by Mum, Kirsty.

I’ll never forget the words “you’re going to have this baby in the next 48 hours, but probably tonight” 

It had all been trucking along nicely; easy conception, no morning sickness and barely any weight gain. A pretty smooth pregnancy. The gender reveal was planned; I was super excited for the baby shower, couldn’t wait for antenatal classes, I had slowly been purchasing cute cloth nappies and was eyeing up furniture. I had a Due Date group on Facebook and spent every spare minute googling everything and anything to do with pregnancy. My 22 week old baby was the size of a mango, how cute! 

Finally, I started experiencing some discomfort – pain under my ribs on the right hand side. My husband and I concluded that it was about time my body started to acknowledge this baby other than my bladder needing to be emptied 20 times in the night! Except the pain was pretty bad and I was struggling to sleep. I suspected preeclampsia but no, it was round ligament pain according to both Google and my midwife. This carried on for two weeks and then stopped. 

A week later Covid hit so my midwife appointment was cancelled. Lockdown didn’t bother me at all – perfect for taking naps and organising the house before the baby came! Except three days in the pain returned with a vengeance! I couldn’t sleep at night and I could barely walk. On the second day it was so unbearable I called Health Line, My GP and my midwife – she was at a delivery so her midwife partner answered. All three told me that because of Covid going to the emergency room was too dangerous, that it was still a bit early for preeclampsia and that it was likely still round ligament pain. By 3pm the pain was excruciating – thankfully my midwife answered this time and told me to go to ED. Level 4 meant no husband allowed, so I went in alone. The waiting room was empty! I was ushered straight through. 

BP 220/180 “I’m not sure how you haven’t had a seizure yet”

Urine test reveals HELLP syndrome  “I’m sorry to tell you that you’re going to have this baby in the next 48 hours, most likely tonight. You’ll be flying to Wellington as soon as they get here. We’ll transfer you to the delivery suite in the next couple of hours and then your husband can join you” I had a friend who had a 24 weeker and 25 weeker boys who were now 4 and 6 and they were doing great so while I was freaking out and in tears I was naively reassuring myself that everything was going to be fine. Text from husband a few minutes later: “Where’s the spag bol sauce?” “Top shelf in cupboard.” ….no point in telling him yet, I thought, wait until you can tell him to come to the delivery suite. 

The next few hours were spent in shock. I can remember every detail of what happened right up until the cesarean but not how I felt. Drew was sent home twice by my midwife to repack, not realising at the time that we’d be in Wellington for months. Seven months! We arrived in Wellington at 1am where they were able to stabilize my blood pressure. By 2:30am baby wasn’t doing so well. At 3:06am on March 29, 2020 our little 525g girl was born. Some gender reveal. Wheeled away in a plastic bag and a little green hat, or so I was told – I wouldn’t see her for another 9 hours. I could have gone earlier but I didn’t want to, I’m still not sure why. 

“I didn’t even know there was such a thing as a breast pump!” I said to my hospital midwife as she hand expressed colostrum for me in the delivery suite. Little did I know at that point I would spend a decent part of the following 516 days attached to one. Drew and I were told that we’d be able to see her together once and then he wouldn’t be able to see her again at minimum until we were out of Level 4. I was both irate and confused. We pushed our anger aside and went to see our little girl where we would call her by her name together for the first time ‘Phoebe Romine McLeod’. I was so enchanted by her – I fell in love. For some reason I saw past all the tubes and wires and just saw her as our cute little button with a fair amount of orange hair. Even though she was so scrawny she really was cute. Drew was a mess, knowing he wouldn’t be able to see her again for an unidentified amount of time. It was heart-wrenching. 

For the next 4 weeks, Drew would be staring at the 4 walls of a motel room over the road – his days filled with a few short video calls from NICU, washing pump parts, waiting in line at the supermarket and writing prayer updates for our family and friends. I was completely exhausted, pumping around the clock, recovering from a cesarean, trying to spend as much time with Phoebe as I could, attempting to understand all the NICU jargon and then relaying it all to Drew the next time I saw him. Phoebe’s first month of life was as to be expected for a micro prem; her first two weeks were great before she was hit with a few infections, scariest of all, NEC, which thankfully cleared with antibiotics. Level 4 was really isolating. Mums weren’t encouraged to meet, there was no parents lunch, we smiled sheepishly as we passed each other in the corridor and there was very little conversation. I desperately wanted to connect with the mums who were there whose babies had started out as small as Phoebe but were close to discharge, I felt so alone. 

When Phoebe was 26 days old level 3 came and with it some relief for me. Drew could now visit Phoebe, though we couldn’t visit together. While it was hard not seeing her together, it was also a huge relief. I could finally take some legitimate rest while Drew was in the NICU. Phoebe trucked along, self-extubated (she coughed up her tube!) and onto CPAP, off TPN and onto full feeds and was steadily gaining weight.

On Day 45 level 2 and finally arrived! I could see my parents! I think not being able to see my mum during the hardest time of my life was the most difficult part of having a baby in NICU during lock down. I desperately wanted them close by, and I really wanted them to be able to meet their first grandchild. I’d been through much longer stints without seeing them but this was definitely the most tearful reunion! Level 2 also meant that Drew and I could now see Phoebe together. We’d been saving a lot of moments  – we (tearfully) read her Earlybird together, prayed for her together, sang to her and finally spent time together as a family. We also realised that we’d been doing cares totally differently when Drew had the audacity to correct my nappy changing system! We’d finally hit our stride – Phoebe was 8 weeks old and I remember thinking that hopefully from here on it would just be a case of getting off CPAP and onto high flow before breastfeeding and then home sometime around her due date in July. We thought we were about half way there. 

When the phone rings early in the morning and it’s NICU and it’s Darcy (NP), you panic. Phoebe had NEC again, and this time it was bad. We had better get over there fast. It all happened so quickly yet the day seemed to drag on. We met with Prof. Stringer – surgery was inevitable as the antibiotics weren’t working this time. I had final cuddles in case she didn’t make it. They put in a long line and she was intubated, then wheeled off in the early afternoon. I basically cried the entire time she was down there. Thankfully, my parents and brother had driven down to be with us for a few days to get us through. 

“I have to tell you, it was much worse than I was expecting and she’s lost quite a lot of her gut. She has Short Gut Syndrome. She’s made it through the surgery but the next 48 hours will be very touch and go.” That night I purchased a onesie online in new born size which said “For this child we have prayed”. It took a lot of faith to believe that she would survive and be able to wear it one day. We would find out months later from a nurse that many of the staff didn’t think she was going to make it. 

We were also told that a home date of July was off the cards and that we should be thinking more along the lines of October. Sigh. Phoebe now had 2 stomas and an ostomy bag. I enjoyed learning how to change it and refeed her ostomy contents to keep her colon working. It was a massive learning curve but it was interesting. We were told she would have the stomas for around 6 weeks before being reconnected. One day her ostomy output was black and very limited. Something wasn’t right. Prof. Stringer was called again – it was decided they’d do an exploratory surgery and use the opportunity to reconnect her, only a couple of weeks earlier than planned. “I’m afraid we’ve had to take even more of her gut”. We were then told to hope to be home in time for Christmas. Christmas?! This was insane, we’d been there since March and I hadn’t been back to Palmy once in that time. 

At day 71 level 1 finally came and my parents as well as other friends and family could meet her – we so loved being able to show her off! A few weeks later, Phoebe had meningitis so we were moved to our own room in nursery G where we would stay until discharge – another 120 or so days away. They increased her feeds by 1ml of EBM every 24 hours. The problem was she kept gaining weight so the goal post kept moving – as she gained weight she needed more food. 

The days turned into weeks and the weeks into months. Her due date came and went. Babies and their parents came and went. It got to the point where it was crazy if we got a nurse who hadn’t looked after Phoebe yet. I felt like a character in a horror version of the movie Ground Hog Day. Leaving her every night knowing she was starting to wake and cry but in a room all alone became unbearable. Phoebe didn’t come off CPAP until 1 month corrected and it took a further two months to get off high flow and onto low flow. Phoebe wasn’t allowed to try breastfeeding until she was 6 weeks corrected; amazingly she latched like a champ and while we had a few other attempts they were really worried about her drinking too much, which I found too stressful so we decided to go for bottle feeding EBM instead.

I pushed for her to be allowed outside in the sunlight, next was to go for short walks (TPN pole and all!), then we were allowed few hours in a rooming-in room as a family before we were finally allowed to take her for short visits to Ronald McDonald house. There were small wins along the way! 

Eventually, the day came where Phoebe was tolerating ‘full feeds’ and she was unhooked from TPN! Finally! Somewhat unexpectedly, they let us take her over to Ronald McDonald that afternoon where we would look after her full time until Palmy was ready to receive us. She was on oxygen, NG tube and pump feeds overnight with around 10 meds – only half of which I’d been allowed to prepare and give her in NICU. “Bring her back if you need to, she’s really high needs”….I went back a few hours later to grab some syringes only to find that her room was already occupied with another baby!

2 weeks later, we were transferred to Palmy Children’s ward for one night before finally taking her home! Phoebe was a champ and we did leave in October in the end. 198 days in NICU. How did that even happen? 

Coming home wasn’t easy – 10 months later and she’s only just come off oxygen at 18 months old (and that’s mostly because she just would not let us keep the nose prongs in no matter how much tape I used!) and now has a G tube instead of an NG (Also tried to pull it out absolutely every chance she got…she was swaddled until she was 15 months old!)…oral eating is hard and weight gain even harder. I just stopped pumping a few days ago. I’m in countless Facebook support groups for all her conditions and I spend a lot of time researching how to best help her. 

Lockdown is still affecting us – we were on the children’s ward with RSV when Level 4 began this time round – Drew was prevented from seeing Phoebe again. This time only for 48 hours before we were discharged. Drew is also from the US so her American family still haven’t met her yet – she’s their first grandchild too.

It has been a really long journey and if I’m honest with myself it’s far from over. Lots of preemies track along almost as if they were born at term. This isn’t the case for us; developmentally she’s quite behind… at 14 months corrected she can sit up but she’s not moving yet, but she will. She’s not eating much orally yet, but she will. One thing I can tell you is she’s so happy. Always smiling and laughing. It would seem that being around all her NICU aunties and uncles for the first 7 months of her life has really set the scene for her – she loves to be around people – she’s such a joy! 

For those of you still in NICU during lockdown, our hearts bleed for you and Drew and I are praying for you. As if having a baby in NICU isn’t hard enough…you have to do it with minimal support. It’s so hard and it’s so, so unfair. We hope that reading about our journey with Phoebe has helped you to feel a little less alone.

Thanks for sharing Kirsty!

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@neonataltrust.org.nz 

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