I still remember everything about the day. It was late February.
I remember it started uneventful. It was a Thursday. The kids and I had been to lunch at my mums and had come home early afternoon for Dixie’s nap.
She slept well. When she woke we had a cuddle, and I put her in her inflatable ring for some tummy time.
That’s where it ends being uneventful. And where I experienced one of my scariest moments to date.
She screamed out. It was a totally different cry to normal. It was pain. I quickly picked her up and her body had tensed like she was trying to poop. I tried to comfort her, rocking her in my arms. Maisy was following me around the house talking nonsense whilst I was moving from room to room wondering why she wouldn’t settle. Getting worried.
I called my sister. She came over and took her from me. By now Dixie had already collapsed and gone floppy on me but was back to moaning. She was pale and starting to bring up mucus and then choking on it. I was in full panic mode.
I called an ambulance. The first responder was here within 4 minutes. Strange what silly things you remember. I just remembered the timer on the phone displayed as I hung up from 999.
She had a high pulse (most likely due to her crying) and was having a slight retraction in her throat so they took us in.
A&E for two hours. SATS normal but Dixie sleepy, pale, uncomfortable. They moved us to an assessment ward after deciding to admit us.
Another hour wait.
The nurse finally called us over for assessment. Took one look at Dixie and hurried us into a side room. She asked if her lips were always blue?? Blue??!! She was becoming unresponsive.
Suddenly there were two doctors and the nurse. They were putting an oxygen mask on her. She was exhausted and lay motionless on the huge hospital bed in just her nappy. She looked so vunerable.
They asked lots of questions, listened to her chest and decided on an X-ray immediately. The doctors were giving us lots of opinions. Aspiration. Infection. Gastroenteritis. Bowel issue.
Then I noticed red spots appearing on her legs. Viral spots. And suddenly things seemed very serious. I just remember daddy L and I swapping looks at each other. Worried.
They wanted to start antibiotics right away. They were treating her as meningitis. They needed to put in an IV immediately. They wanted her nil by mouth, so an NG tube was inserted in her nose with a bag to drain her stomach. They wanted blood samples.
It was on their sixth attempt and third doctor when they successfully got the cannula in her. Sixth. She just lay there, eyes closed. We were finally put into a room 5 hours after arriving. Our own room. Daddy L went home and I stayed. She didn’t have a comfortable night. She would moan and whimper and every hour was still retching.
I stayed by her side in a chair and didn’t sleep. At 2am a doctor came to see us after receiving her chest X-ray results. Her abdomen was very swollen and had moved up into her chest cavity. She was full of gas. They had ruled out a hernia as a chest X-ray from just after birth showed all her organs in the correct place.
The next three days were a blur of different tests, ward hopping and sleepless nights. Three days of worry, of confusion, of more doctors with possible diagnosis, of surgeon involvement. Of her being prodded and poked and passed from professional to professional. Three long days and nights of missing our home, Maisy, Daddy L. And no answers.
All we knew was her stomach had caused her left lung to collapse, but they didn’t know why. Her cannula had only lasted 12 hours before coming out and a further 5 more attempts (including trying her skull) failed. Her veins would just collapse. It took a surgeon to finally secure one in her.
Finally a barium swallow was performed and a blockage was seen in her stomach. Within a couple of hours she was being wheeled down to emergency surgery and I was kissing her goodbye in the little room beside the theatre. We didn’t at this point know much about what they may find. It was just guesswork. The surgeon had asked us to just trust her. At this point we had no choice.
Several hours later, we got the call she was in recovery. She looked so calm. So peaceful. No tubes on her face anymore. It was sweet relief. The surgery had gone well, and the biggest surprise was it had been a diaphragmatic hernia all along despite them ruling it out in the beginning.
They had successfully repaired the diaphragm and her abdomen was anchored down with a gastrostomy which would come out three months later (or not as the case actually was!)
We spent 24 hours on the HDU, then the following evening we were moved to the surgical ward. Things here for me felt more settled. I was waiting for Dixie to wake up more and take her feeds. Build up strength and come off her epidural, fluids, monitors then we would be on the home straight. I wasn’t waiting for the next test, the next possible diagnosis. I wasn’t on tenterhooks. My baby had been fixed, now I needed to be patient. For her to get better.
I spent a lot of time by myself from then. Whole chunks of time. Hour after hour watching Dixie sleep, too afraid to leave her side in case she woke up and I wasn’t there. All my family were stretched. Daddy L was working, then seeing Maisy, then coming to hospital at night. My mum was with Maisy (and I didn’t want her here at the hospital) My sister was working. They both called in when they could. I also had a couple of visits from other parents who had children in the same hospital.
Even still, it was one of the loneliest times of my life. I would have done anything for a friendly face, a meaningless chat or just a hot coffee and a hug.
It made me realise what a lonely life it can be for parents with poorly children. Or those that spend long stretches in hospital. I met some absolutely amazing little people on that children’s ward. And inspirational parents and families. Those that had to leave everything behind to spend weeks in the hospital. Months even. It becomes almost a second home to some. The nurses and staff become a part of their little family. It wasn’t a depressing atmosphere, it was full of life.
It was really humbling.
Dixies bedmate for a couple of nights was an amazing little lady. Despite enduring far too much in her short life, she was the star of the show. Literally, she lit the ward up. Everybody (including me!) wanted to be around her. And her mummy was equally awesome. You would have never imagined her stay had been as long. Always smiling and upbeat. Always happy to chat. It was a pleasure meeting you A & A x x
Four days post operation and we were discharged. Papa L came all the way down from Scotland to help us out and a couple of weeks later we were getting back into the swing of things.
We were in March now and Dixie was 9 months old. And development wise, we were going backwards following the operation. Apart from one area. Her hands! She was grabbing, holding and passing objects!! All that laying around had come in handy for something!
Clever little lady 🙂