<div>We are raising funds on behalf of the Bunting family for medical supplies , resources and everything in between.
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<div>PLEASE SEE BELOW HEARTBREAKING WORDS FROM SOPHIE .
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<div>Trigger warning, our distressing story about Harriet’s journey below (a little graphic). I’ve had time to sit on what has happened this last year and now coming to terms with what absolute trauma we are actually living (I’ve been in denial for a while ).
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<div>A year ago today our perfect little world was turned upside down. Our baby girl stopped breathing (again) and this time I thought we had lost her. We’d previously had one episode where she was crying with severe stridor and starting to go blue when we called an ambulance and had about 7 paramedics in our lounge room. She calmed, the hospital checked her over and we were cleared to go home. A week later, Shane had his first day back at work and We were simply driving home from Coles (mum was driving me as I’d just had a c-section 3 weeks prior). Harriet was crying because she was hungry and all of a sudden she went quiet. Great I thought, she has drifted off and we can get home to feed her. I turned around to see her in her mirror and I yelled at mum to pull over. Our girl was blue and not breathing. When I jumped out to pull her from her car seat she was clammy, limp and a shade of white/grey that will never leave my mind. I’ve seen death before and I thought she was gone.
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<div>I don’t know why but my instinct was to hold her upright and just cuddle her. All of our angels must have been there because she took a breath and we rushed her to hospital.
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<div>We were taken straight to resus and had every available Doctor work on her for what seemed like hours.
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<div>When they couldn’t find anything immediate and her breathing settled we were transferred to the children’s ward (H1) where we stayed for a week seeing every specialist in the hospital. We had to start writing notes as Dr’s were speaking because there were so many avenues they were searching.
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<div>We finally saw ENT (our saviour Niall Jefferson) and he made plans for surgery for suspected severe laryngomalacia (Tully also had this but very mild). In the meantime, Harriet’s feeding was deemed unsafe and just as we had gotten over the initial breastfeeding hurdle, they placed and NG tube and was nil by mouth. She had a swallow study for a rare disorder called achalasia which was devastating.
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<div>She had heart scans where the head cardiologist sat us down and told us Harriet has an aortic arch and is likely going to be flown to Westmead for open heart surgery. Our world was crumbling every day when they would pile on more bad news.
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<div>Surgery day came around and call it my denial but when we were taken to paediatric ICU I went in to shock when I learnt Harriet wouldn’t be leaving their care. For some reason I thought she would go back to the ward and our world would be ok. Dr Jefferson sat us down and told us that Harriet’s trachea (airway) was 90% closed (the size of a foetus) and he isn’t sure how she survived 3 weeks at home. We were to go in the next week for a reconstruction.
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<div>From this first day in ICU Harriet was intubated and on life support as she couldn’t breathe on her own. I spent so many hours just sobbing that my heart had been ripped out and was laying in a griaffe bed in PICU. She was one of the most critical babies in the Hunter at that moment and I couldn’t do anything about it.
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<div>Her trachea was reconstructed by Dr Jefferson (along with Dr Kong in the room) and she returned to PICU. The next weeks were again the rockiest we’ve experienced. Her airway was so critical it took 2-3 nurses/Dr’s to move a 4 week old baby without compromising her airway.
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<div>During this time, Shane and I took turns each night of being home with Tully and being at the hospital. I pumped every 3 hours this entire time. It was bloody hard work and a huge slog but it was the only thing I could do for our girl. All the while I couldn’t drive and had to rely on some amazing friends and family to shuttle me to and from the hospital. What a huge time
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<div>They tried extubation but our girl crashed and again, we near lost her. In the recovery process, Harriet became addicted to the pain medication and let me tell you, to have a 6 week old baby addicted to pain meds is utterly heartbreaking.
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<div>One morning I woke up to a quiet concern from a doctor and 2 nurses standing over Harriet. The Doctor asked me to try and rouse Harriet as her heart rate was dropping and she was unresponsive. As I stood there trying to get a response from her a CT scan was organised. She was rushed down and I was sat down to be told that they aren’t sure what is happening whether she had a seizure and they were checking for brain activity. Another moment etched in my mind for life. I msg’d Shane (because I couldn’t speak) and said get here NOW.
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<div>Harri came back and seemed somewhat alert now which reassured my heart she would be ok. Later that day we were taken to the private meeting room and told that Harriet had accidentally been overdosed on her sedation drug. Obviously we were devastated but we have watched the level of care this whole time and saw how easily that mistake was made (the bottles were the same colour named nearly the same). They were so good in accepting the responsibility and making sure we were supported. Harriet returned to her normal stats later that morning.
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<div>We kept at it and eventually graduated to come home with NG feeds. On top of all this, Harri has bi-lateral hip dysplasia which is very severe. We also learnt that she has no genetic abnormalities, her heart condition is somewhat ‘common’ and at this stage doesn’t require surgery and she doesn’t have achalasia (what a blessing).
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<div>Months later orthopaedics tried relocating her hips and placed her in a spica cast. After surgery I stayed the night in PICU and her airway didn’t cope. The Doctor made a met call (the emergency button on the wall) and Dr’s and nurses flew in to the room from every direction and told me to get on the bed and cuddle her (I look back now and assume this was a) to try to calm her but b) to be with her if things were not going to improve). Her saturation got to 34% (for us to go blue from not breathing our saturation (oxygen) dips below 90%). So things were dire.
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<div>They worked hard, got her back and she improved from there. Unfortunately the hip surgery didn’t work so the cast came off as quick as it went on. We are now waiting for open surgery to remove bone, place screws etc but that won’t happen until her airways are stable.
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<div>Fast forward to Xmas time at Gympie and she again had a breathing episode where we called the ambulance and unfortunately, being a small town we had to guide the doctors in what care she needed and we were transferred to the Sunshine Coast children’s hospital. Shane and Tully picked us up from the car park with our new van in tow and we legged it home.
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<div>We’ve now had the news that Harriet’s airway is still narrowed and she needs another reconstruction but this time a tracheostomy will be placed to improve her recovery (because last time was too rocky).
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<div>So now every day and every night I have a hospital bag packed ready to go if she stops breathing. We don’t venture far from home and we have emergency steroids on hand (they don’t give these out to take home normally) in case she needs them. Our reality is, we can’t let Harriet get too upset or her airway gets inflamed and obstructs. Every time she gets sick (which is a lot now that I work at a school) she deteriorates and we’re on high alert. She can’t go to daycare because of the risk so I need to cut my work days down.
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<div>It’s been the biggest year of my life and as much as I’d like to forget, it’s a constant reminder of how lucky we are to have her
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<div>While all this initially happened, Tully started kindergarten and did such an amazing job of keeping it together. She now has some anxiety issues around ambulances but is doing well. I myself can’t stand the sound of sirens and immediately come to tears when I see them fly past, a lasting impact of the trauma.
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<div>A lot can happen in 12 months
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