As told by mum Aisling
Remi was born at 24 weeks and 3 days. We had a 109 day stay in NICU without any major complications and at the time of writing, Remi is a happy and healthy one year old!
I went to my 20 week scan excited to get a glimpse of our baby after what had been a pretty straightforward pregnancy as a first-time mum. Unexpectedly we found out that my cervix was open and subsequent scans showed that my membrane had funnelled so they were unable to do a stitch, which could have helped me get further along through the pregnancy. After 24 hours in hospital I was given medication and told to go home and rest but also to keep active (but not too active) and hope that we got to 23 weeks. We were told that to get to 28 weeks would be a great outcome. I felt like a ticking time bomb. The 17 days between the scan and viability were so scary.
When I got to 23 weeks, it felt like such a relief. It meant they could at least try. My midwife talked us through what a premmie journey could look like, and told us about the NICU.
A few days later at 23+5 I got up from the couch to go to bed in the evening and my waters broke. I called my midwife and she told us to go straight to the hospital and she’d meet us there. They did a scan at the hospital and they confirmed that a lot of the amniotic fluid was gone but I wasn’t in labour and the baby was doing ok. Things were still ok. I was given steroids and magnesium sulphate and we were told I would stay in hospital until I went into labour or got an infection. A NICU nurse practitioner came and spoke to us and told us a bit more about what was likely to happen when Remi was born.
4 days later I went into labour and little Remi was born in the early hours of the following morning weighing 770g. We didn’t know at the time, but found out later that I had Chorioamnionitis and my body did a great job at getting Remi out before the infection could have put us both in danger. Her birth certainly wasn’t what I had envisioned, I was in the delivery suite with an IV line in each arm, about 12 people in the room, and I relied heavily on the gas to get me through! Despite the anxiety of the prematurity, I tried to stay positive during the labour – today was the day I was going to meet my beautiful baby.
We had already chosen her name, I asked my partner to make sure the NICU staff who would be working on our baby knew her name, it was important to me that she was her own person from the start, not just “Baby of Aisling”.
I had been prepared in advance for what would happen next and Remi was wrapped straight into a little plastic bag and intubated and went into the portable incubator. I got to see her through the shuttle for a little minute. It was difficult to actually see her because she was behind plastic and with all the equipment. I knew she would need to go straight to NICU I had written a message for my partner to read to her as I had expected I wouldn’t be able to meet her straight away.
The nurse practitioner said to me “So we’re just here to say hello and then goodbye for a little while but we’ll see you soon in NICU. This is the beginning of a long journey. There will be good days and bad days but we will all be there travelling together”.
And then off they all went to NICU. I had to stay and have a small surgery to get my placenta out as it didn’t come out after the birth and so I had to wait about six hours before I could meet my perfectly tiny baby. I came out of my surgery and got my phone back and my partner had sent photos and videos for me, little Remi was doing really well. She was so beautiful.
When I got to meet her I couldn’t comprehend how small she was. Her head was slightly bigger than a tennis ball, her hand was smaller than my thumbnail but she could grip my thumb and it felt incredible. I was so in love.
Then the roller coaster began!
We definitely had ups and downs, particularly in that first month. My getting discharged from hospital on day 3 and going home felt impossibly hard, it was only half an hour away but it was as though my heart could sense every kilometre between me and my baby. COVID restrictions for the first month meant only one parent visiting at a time, so I hardly saw my partner at all.
We just tagged in and tagged out, spending as many hours a day there as we could manage between us.
After a couple of days, Remi came off the ventilator and went onto NIPPV, I was able to have a cuddle on day 4 which was just so special. I had expected I was going to have to wait a lot longer. It was really hard on my partner not being allowed to be present when Remi came out of the incubator for the first time for a cuddle.
Her right eye opened on day 4 and her left eye on day 8. She was reintubated on day 12, and then again on day 25 as her little body got tired. Her kidneys weren’t working well for a while so she couldn’t have any fortifiers in her milk and so she didn’t put on any weight for those first 4 weeks. Eventually her kidneys came right and she started growing again, finally hitting 1kg on day 38.
From then, things became a bit more smooth sailing. She finally moved onto CPAP on day 51.
She was only able to have one cuddle a day for a long time as the process of getting her out of the incubator and putting her back was a big energy spend for her. We alternated cuddle days for a while, and then when she was a bit bigger we would swap her between us so she only came out of the incubator once, but between us she could stay skin to skin for over 10 hours a day.
When she was on CPAP it pushed air into her tummy which made her really uncomfortable. Combined with the large volumes of milk she was being fed through the tube, she was unhappy for a while. It was so hard just sitting with her when she was so uncomfortable and I couldn’t do anything to help her feel better. Often I couldn’t even cuddle her for long as she was too wriggly and couldn’t find a good position for herself. But she needed the CPAP to breathe, and she needed the milk to grow.
Somehow we got into the groove of things and NICU became just life. It’s a very strange life. At the start of every day I had to brace myself for the day ahead and the warm dark room and the cables and monitors and alarms. And then at the end of each day I had to brace myself to leave my baby again. It was hard being there but harder being away.
Remi had over 160 blood tests during her time in NICU. She had 11 chest X-rays, 4 head scans, 3 heart scans, a kidney scan, 9 eye exams. She had 5 blood transfusions total, a few courses of antibiotics for suspected infections, but mostly she had a straightforward journey with no surgeries, just lots of cuddles and stories and growing. I wasn’t able to soothe her in the ways which you think about soothing babies. I couldn’t pick her up or pat her on the bum or even stroke her – her skin was too delicate. But instead I learnt to soothe her by putting one or sometimes two hands on her to contain her – a hand hug. Or to use my voice really quietly, which she came to recognise as her mama. The nurses said at the beginning she didn’t like anyone touching her – except us, her parents.
We had some fun times too. On my birthday the nurses made a card with Remi’s footprints on it for me. We had a dance party at the incubator and they sang happy birthday to me. On Halloween, they helped us make an epic scuba diver costume which went perfectly with the CPAP mask.
One day Remi was crying and wouldn’t settle in her incubator. One of the nurses swore by Elton John. I came back from the bathroom to find a phone in the incubator playing Rocket Man. Sure enough, Remi wasn’t crying anymore!
I was really anxious about Remi moving rooms. It was always a step closer to home but it meant getting used to another space and different nurses and parents.
The morning Remi was moved, I found a boarding pass on her cot with all her details to move from Room E to Room B.
It definitely made me smile!
The good nurses were what made NICU bearable and got us through. We weren’t allowed any visitors in NICU (until the rules changed in the last couple of weeks) and so the nurses were the people watching Remi grow with us, cheering her every milestone. They’d come and check in, even when we were in a different room and it really felt like they genuinely loved and cared about Remi.When Remi finally came off CPAP on day 87 and onto Optiflow, she didn’t need a mask anymore, it was the best. We could finally see her little face! And it meant she was able to try breastfeeding.
On day 100 she went onto low flow oxygen and we were able to take her outside of the NICU for the first time! We went for a walk with a buggy with the oxygen and a monitor and a nurse just to make sure we were ok. She had a bit of a spew, probably just from the motion. The next few times I took her for walks around the hospital she had some little spills which made me panic, it was really scary not having nurses immediately there!
I was lucky enough to be able to stay at Ronald McDonald House near the end of our stay so that I could go over to NICU to do night feeds. A few nights later we got the best news that we could room in at the hospital. We finally got to spend the night with our baby, and when she cried in the night, I got to the be the one who was there to comfort her. Responding to her cries wasn’t a part of parenting I ever thought would be such a privilege. We spent a couple of nights rooming in at the hospital, and then Remi got to come across to Ronald McDonald House and stayed there with us for a few nights. Being so close to the hospital was really reassuring and a nice step closer to home.
Remi finally came home the day before her due date – day 109. She weighed 3.8kg, five times her birthweight. When we left NICU after her final checks, the other parents and nurses and doctors all came out into the corridor as we left to cheer for Remi it was so emotional.
What an amazing end to a long journey.
I was super anxious as she was coming home with oxygen and a feeding tube but we were shown how to do all of the things and felt comfortable that NICU were only a phone call away if we weren’t sure about anything.
Once we were home and out of the NICU environment, breastfeeding got a lot easier and within a week she was fully breastfeeding. She was on oxygen at home for about another 6 weeks and then she got a rash and was back in hospital for a week.
In that time we did a monitored trial without oxygen and she passed! She was completely tube free just after she was 5 months old.
The staff in NICU are truly amazing people. The nurses are so lovely and caring for the babies, they definitely deserve more recognition for the work that they do. The doctors are all so patient and take time to explain everything that’s happening and answer all of the many questions I had. I can’t thank all the staff enough for the care that they gave Remi to give her the best start to life she could have had outside the womb.
The Little Miracles team are also wonderful. Being able to talk to someone who had had a similar journey with a healthy kid at the end of it made such a difference. The thoughtful gift packs and they way they celebrate milestones and special occasions really helped us. Remi was gifted a 100 day crocheted goat! The parents’ lunches were amazing to meet other parents, some who have become good friends since.
We were advised that any bugs would likely hit Remi hard in her first couple of years. We have been fortunate enough to keep her home and reasonably isolated from other people, we had strict rules on visitors. Other then her paeds admission for a zinc deficiency she got through her first year without any sicknesses.
Remi is now one year old, 8.5 months corrected. She is more than ten times her birthweight. A year ago we didn’t know what the future would look like with such an early wee one. Today, she is a strong, resilient, sweet, gentle, happy, funny, and loving baby. She can crawl, climb, clap, cruise and gives the best cuddles. She loves music, animals, books, food, swimming, and exploring the world around her. She has big blue eyes and a cheeky grin.
The NICU journey felt impossibly hard at the time and changed me in many ways and will no doubt stick with me forever. I have a gratitude for parenting that I know I couldn’t ever have appreciated in the same way. To watch her having grown so much, from the smallest human I will ever meet, to a strong and capable little person has been incredible. The people I have met along the way have also been a blessing.
To anyone reading this in NICU at the moment, I’m sure it feels overwhelmingly hard at times, and I hope that your journey eventually gets easier. I would suggest you lean on your family and friends and people around you for support, accept help, tell people what you need – cooked meals we could put in the freezer were such a huge help. Focus on getting through the next hour, the next day, don’t think too far ahead. Connect with other parents. It took me a long time to have any desire to speak to anyone else but when we did it definitely paid off.
I have some really good friends now that I met in NICU, and it is so good to have people with that shared understanding of fears and feelings and challenges and the pride we have for our little miracle babies.
***** Thanks so much for sharing *****
Aisling also shared her breastfeeding journey which you can read here
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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