Our second baby was born in August 2022 after a very nerve-wracking and complicated pregnancy. Following the birth of her big sister in 2019 at 25 weeks, and then a miscarriage, this pregnancy was incredibly hard both physically and mentally.
I had issues from day one with subchorionic haemorrhages causing on-and-off bleeding for the first 14 weeks of my pregnancy. Experiencing this after our miscarriage which only happened months before was such a mental battle trying to stay positive every day and not think that we were losing her as well. Our first daughter was born due to severe pre-eclampsia and I had ongoing blood pressure issues even outside of pregnancy so I started this pregnancy with hypertension already. We were hopeful to make it a lot further though, with the added help of Clexane and weekly monitoring from day one. Every scan we went to she was measuring much bigger and healthier than her big sister so we felt confident. Around 20 weeks it became clear that we were just sitting and waiting and trying to make it week to week, and eventually, it became trying to make it through the day. At 21 weeks we had a discussion with the Neonatologist who saved our first daughter, about if we wanted to resuscitate Georgia and try all life saving measures should she come before 24 weeks. These conversations brought us to our knees. We never had these hard discussions about our first daughter because it all happened so quickly, but this time around it was like everything was moving in slow motion and none of it felt real. I couldn't believe this was our reality and our story again and we needed to make these decisions about our baby...
I was extremely uncomfortable and crying every day from the pain I was in from being so swollen due to leaking protein that we weren't able to control. It got to a point where although I was suffering and my labs weren't good, our baby was still completely healthy inside and she wasn't being affected. So I continued to push through every week, and then daily - just trying to get through the day, to deal with the pain and discomfort, to give her the best shot at survival and keep her in as long as possible.
Georgia ended up being born on August 4th 2022 at 29 weeks exactly. I attended an antenatal appointment the day before and my blood pressure was too high to be sent home. We were transferred from Nepean to Westmead before delivery as there weren't any available beds at Nepean NICU. I had some concerning blood test results, and my placenta and blood flow were starting to deteriorate, I also had worsening symptoms that week with the headaches starting and gaining 15kg in fluid over one week. Unfortunately, I only received one out of two doses of steroids because things had progressed so quickly, but it was time to meet our baby girl, she was no longer safe inside my belly and it was time for the NICU to take over. Georgia was 1260g when she was born and she let out the most beautiful little cry letting us know she was here, she was okay, and she was putting up a fight. I did not get to see her until the following day, an excruciating 14 hours after she was born. My husband and I constantly mentioned how big she was, which of course met us with awkward stares from her doctors and nurses and "What do you mean? She's 1.2kg, most parents would be freaking out" comments. Until of course we explained we were no strangers to the walls of a NICU and our first little girl was only 610 grams, so yes, Georgia was our big girl, literally double her sister's weight.
Compared to her big sister, Georgia had a relatively easy NICU stay. We joked with her nurses that she was "a boring NICU baby" and it was just how we all wanted it! She was on CPAP after birth, ventilated for that night, and then back to CPAP the following day. She had a large PDA that resolved over a few weeks, she also had stage 2 ROP that resolved on its own and a grade 1 brain bleed that cleared prior to discharge as well. The only other issues we ran into were around feeds. She started having big fleeting desats which only happened during feeding. We started her on antibiotics as a precaution while awaiting blood culture results, which came back negative. During this time, she was transferred by NETS from Westmead to Nepean Special Care. It was amazing being so much closer to home, especially while we were learning to breastfeed and had our toddler at home that desperately needed us as well. Her desaturations continued, but as it was only during feeds everyone put it down to reflux. She started on Omeprazole & thickener both of which made no difference. As most of us know, the last few weeks of your stay drag on forever! She was constantly going on and off oxygen as she just couldn't maintain sats during feeds. At one point it looked like we would be bringing her home on oxygen but she eventually came off for good, although still desaturating during feeds, we were told she would outgrow her reflux as she got bigger.
Georgia came home after 63 days to her loving big sister who was absolutely smitten with her and it was incredible to all be home under one roof finally.
Unfortunately, a lot of issues around feeding persisted for Georgia, with coughing/splattering during and after feeds, severe vomiting all day, and constantly being sick and congested. After months of pushing and advocating like us fierce NICU/medical mums do, we finally had a VFSS done in June which confirmed what I knew all along and showed that she was, in fact, aspirating with laryngeal penetration. It was no longer safe for her to drink orally so the following day she was admitted for a feeding tube.
It's been 5 weeks since she had the NGT inserted, so still very early days for us navigating tube life. She is on a waitlist for surgery to see if there's a structural abnormality causing her aspiration. We're also waiting to be placed on a waitlist for a PEG as it does not look like her NGT will be short-term and fundoplication to stop her reflux.
Despite her additional medical needs and frequent specialist appointments, tests, studies and therapies, she is such a happy little girl. She just started rolling both ways at 10 months (7.5 months corrected) and we'll be celebrating our little miracle girl's first birthday in a few short weeks.
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