It was a regular Saturday afternoon, I was starting dinner when my waters broke. I was 27 weeks and one day pregnant with our first child, a little girl. Up to that point, my pregnancy had been unremarkable and very healthy. I drove over to the hospital and when the nurse gravely told me she thought my waters had broken I (very naively!) thought righto, well just fix that right up and I’ll get out of here. Turns out, despite all the advances in medicine that is one thing that can’t be fixed.
We spent an anxious week on bed rest in the hospital being monitored for infection and labour and reading heartbreaking stories about outcomes for premature babies. After 3 days with no labour we breathed a sigh of relief and started asking when we could go home, 34 weeks was the goal. We made it 4 more days when an infection struck and our daughter went into distress so I was whisked off to surgery with the NICU team ready and waiting to do everything they could to save her. At 4:21pm Grace was born weighing 1.16kg, 34cm long and with paper thin skin. She emerged crying which we didn’t expect as we were told she was too early to cry, and that was the moment I knew we had a little warrior on our hands.
The next two months was the most harrowing journey of our lives. Grace was rushed off to the NICU with her Dad. The first time I was able to touch her by laying a finger on her tiny arm, was 8:30pm that night. She was intubated and had tubes and wires covering her. The next morning I was able to hold her for a brief moment, she wasn’t able to feed but she’d had her intubation tube removed and now had her CPAP snorkel on. That snorkel stayed for weeks; she didn’t appear to enjoy it but it did all the breathing hard work for her so she could grow.
The NICU team were wonderful and gave us as much time as they could balancing her health with our need to cuddle her. When it was time for my discharge we went up to the NICU, we were already on edge and in tears knowing she was going to be left behind in the hospital. Unfortunately, Grace had taken a turn and was being closely monitored, we were kindly told to go home and get some rest and that they would call us if she wasn’t going to make it. No one slept that night. She fought hard and the next morning we cuddled her again for our maximum time. At that point we thought she was out of the woods, because despite the laundry list of issues ranging from presumed sepsis to PDA she seemed to be going pretty well.
A few days later Grace suffered a grade 1 intraventricular haemorrhage. The NICU doctors explained that they weren’t entirely uncommon but they didn’t know the effect of it and wouldn’t for some time, the only thing to do was wait. So we tried our best to stay off Google and waited. It wasn’t easy.
Fortunately those two moments were our worst days and Grace seemed to emerge out of them with an amazing determination to come home. Her PDA closed, her eyes tested normally and she grew bigger. It seemed every test they threw at her after that first week she passed with flying colours. She had some ups and downs, like needing a PIC line inserted for a blood transfusion, but even when we did the merry dance of one step forward and two steps back, Grace kept getting bigger and stronger. Of course, there were many days of tears, frustration and fear.
We settled into a routine taking shifts with her at the hospital to do kangaroo cuddles, read her stories and talk to her. It wasn’t easy going to the hospital each day, entering in the doors and seeing other women taking their full term babies home and knowing you wouldn’t be taking your little girl home that day or any day soon.
At 31 weeks Grace’s ability to breathe on her own was being tested to see if she could move to Special Care and during kangaroo cuddles she dived for the breast and began feeding, she was so determined to get there and latch on! We were sure she would move and start the journey home but ultimately it was too hard on her little body to breathe unassisted at that point so she stayed in the NICU for another week.
Grace spent 30 days in NICU with round the clock care and then was transferred to Special Care for another 30 days. By the end of her time in hospital both Grace and us were itching to come home and stay there. Finally, at 36 weeks and 6 days she was allowed to come home! She weighed a grand total of 3kg and re-examination of her brain found that her haemorrhage had disappeared, like it had never happened, the doctors surmised that her brain simply grew and repaired itself.
Grace was heavily monitored for the first 3 years and received support and check ups with the NICU clinic, she undertook physical therapy due to low muscle tone and she walked at 15 months. She met all her milestones at her adjusted age, some well before that; she’s always been a talker and was forming full sentences at 18 months. She was less interested in moving at that time and her therapist was forever trying to entice her to roll over or just move, just a little bit, but she was content to observe the world and did everything on her own time.
Today Grace is a thriving 5 year old preschooler. She has lots of friends, loves scooting, swimming and never stops running, the irony! Grace meets or exceeds every milestone, she tells great jokes and dotes on her younger sister (who emerged exactly on schedule, full term). The other day after getting tired from scooting for over an hour she looked at the hill she needed to climb to get home and said aloud to herself “I can do this, I know I can” and that attitude from her and her NICU team is what has her here today.
We are profoundly grateful for the NICU services we received and we know that Grace wouldn’t be here with us in all her glory if it wasn’t for the incredible team of NICU doctors and nurses who worked tirelessly to help her live.