Cottage Flowers Arrangement

Courtney Yeoman

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 GroundHog Day. Leaving her every night knowing she was starting to wake and cry but in a room all alone became unbearable. 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, then we were allowed a 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’. 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! Two 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 is fed through a tube in her belly instead of tube down her nose (as she 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!