Back in December, we had to rush 7 week old Ivy to hospital after she didn’t get better from a cold she’d had for the previous week. I’d taken her to the doctor after the sniffle had started and they checked her out and proclaimed there was nothing on her chest, it was just a cold and I should wait it out for a few days. So I waited it out and kept her warm and fed but she didn’t seem to get any better. Her colour started to go grey and the rasping breathing got even worse which made her not want to nurse. I sat watching her the next night, feeling her head and thinking that her temperature was little high and deliberated calling 111. I know the doctor had said she was OK but there was just something that wasn’t sitting right with me. I got a recorded message advising to call back much later. It was already late in the evening so I decided to see how her evening went and perhaps try again over the weekend if she didn’t pick up and start eating again.
By the Sunday she had started to nurse again (much to my relief) and I thought she had turned a corner. What an awful cold for such a little one to have! I continued to keep my eye on her. By Wednesday I was convinced something was really wrong as she had gone off her food again and had developed gunge around her eyes like she had an infection. All these things at once couldn’t be good right? I stripped her for a warm bath to see if that would help and could see her ribs as breathed in and her nostrils flaring as she breathed out. Things had taken a turn for the worse very quickly. I called 111 and they assessed immediately that they would send an ambulance. The ambulance arrived just as I got my shoes on and Josh had thrown my bag at me. Ivy and I left the house in a rush on the Wednesday night and we wouldn’t return for another 11 days.
I held oxygen to her face as we sped through Brighton and on arrival to The Royal Alexander Children’s Hospital were fast tracked through the packed waiting room which contained other children suffering with the cold weather and rushed to the resus room. She was put on an infant’s bed and I was guided to a chair at the back of the room as doctors and nurses started to make assessments . They had put a SATS monitor on her to check her oxygen levels and pulse and more monitors here and there but I couldn’t tell what for. Suddenly alarms went off. I was in a daze and didn’t realise these were created by my child until more doctors and nurses ran into the room to help. Someone explained to me that the alarm going off had meant that she had stopped breathing as had apnea – one of many new words I would learn throughout our time in hospital. She basically had stopped breathing for long enough to trigger an alarm. That wasn’t good right? She’d be OK though?
Then next minutes were a blur. They put tubes on her and mask on her face to give oxygen and I was pulled aside and told an anaesthetist was on their way as she would need a tube to put in to help her breath (intubated). X-rays were taken and drugs given and while they waited for the anaesthetist I was able to stand at her side and see this tiny human helpless and vulnerable. She couldn’t breath. What was wrong? I’d already Googled extensively throughout the day and had convinced myself she had Bronchitis or pneumonia and on seeing the look at the doctors face as he was handed the x-ray guessed there was something wrong with her lungs. The guilt rolled over me like tsunami: I could have brought her in sooner had I just make more of an effort to get an appointment with the doctor. Paranoia set in – would they start to question my ability as a mother? “Did you know she was ill? How long did you know she was ill? WHY DIDN’T YOU DO ANYTHING SOONER?”
I couldn’t look anyone in the eye. Tears welled up and I fought hard not to cry as I had this tiny human in front of me that needed me. When no-one was near the bed I whispered in her ear that I was sorry and that I would make it up to her if she stayed strong and got better. This was a very low point.
The dynamic of the room changed, the anaesthetist was here and they were about to start the procedure. I was taken aside. I was told that she would need special care on an intensive care unit and that they couldn’t do it in Brighton. They were trying to find where they could get a bed. It could be London but it might be further afield.
Transferring to Intensive Care
Her tube went in OK and she was attached to a machine that would help her breath. She would be OK for now as the machine was doing the work for her. Her chest moved up and down mechanically. I was told there was a bed in Southampton for her and that the retrieval team were on their way. After a couple of hours they arrived and after the fraught past few hours it was a relief to see three very positive faces. They had made the long journey but this was a shift them and they were professional as anything. The doctor was even heavily pregnant (28 weeks she said later) but they assessed and transferred Ivy to something called a Baby Pod and I blindly followed to the ambulance. It was 2.30am by this point and I fell asleep on the way. We transferred to the PICU where I met the nurse tasked to looked after her that night called Jo. I sat diligently by Ivy’s side until I was convinced to go and have some sleep in the rooms they had available on the ward for parents.
On waking I met the day nurse, called Luke and with doctors who started to explain the process of elimination that they were going through., They had sent off bloods and swabs and were trying to work out what had caused her to deteriorate and make sure there wasn’t any underlying problems. She was comfortable and on the ventilator and being fed intravenously. She was still in a bad way. Josh arrived by 2pm and I burst into tears as soon as I saw him. I was able to explain everything the doctors had told me and that wa sa good way of starting to make sense of the night before. The nurses had organised us a place to stay at the Ronald McDonald house on the hospital site so we had a nap and regrouped and prepared for the next few days. I got back to the ward and the night nurse Jo had taken over and made me feel so much better about Ivy’s treatment. The nurses urged me to go and get some sleep. “Treat it like an intense babysitting service” they said and so I did and although I would have wanted different circumstances to have had my first night of sleep after a new baby. I slept the whole night through.
Getting on with Getting Better
Back in the morning I was met with this little face. She had a blood transfusion overnight and her colour was looking so much better. Her hair had also been washed and the roses had started to spike it up. She looked like a little punk rocker:
Her hair became the talk of the ward and as the days progressed every doctor or nurse or physio that would visit would comment on it. She remained heavily sedated for five days as they monitored her, took more samples (including a lumbar puncture) and removed fluid from her lungs. Every few hours, she was given milk via tube and medicine was fed automatically through one of the many tubes going in and out of her. Throughout this time I would head off to express breast milk using the pumps they had on the ward. This was disaster after the first day as I started to dry up, even after Josh had bought my own pump to the hospital. Some of the staff had some great advice which included waking at night to express.
During that time, Josh and Scarlett came to visit twice and stayed for a few hours. It was so lovely to see them and after the first visit, Scarlett seemed to cope a little better at home. After her first visit back at home she put her Teddy to bed and nursed him better.
After five days, the doctors felt that Ivy would be well enough to have her intubated tube taken out and see if she fancied waking up because there was no further complications and tests had started to come back confirming that she had pneumonia. I was allowed to properly hold her for the first time since she got ill after she woke up later that day. She was still woozy and giddy with the painkillers, not quite knowing where she was, but we managed to have a moment which I captured to share with Josh. I was so happy at this point:
Over the following days, Ivy was transferred to the children’s ward to be monitored for a couple of days and then we were able to get transferred back to Brighton thanks to the determined nature of the nurses there in getting us a bed. Such amazing ladies who all took pity on my sad face because I missed Josh and Scarlett so much. Getting back to Brighton would mean that I get to see my family daily. I wouldn’t have to eat horrible hospital food any longer. Poor Scarlett was missing me terribly and I her.
I was so happy that we got a bed back at Brighton. We’d be returning home after 8 days away. I decided to surprise Josh with video call from the ambulance on our way and his face was a delight. Ivy slept the whole time during that journey. Such a change from when we were last in the ambulance. Josh, Scarlett and my mum visited later that evening and we would see them each day at until Sunday when Ivy was declared well enough to go home. We’d had some work to get to that decision as she needed to show she could feed without the tube. I asked the nurse if she could take her feeling tube out as she wasn’t nursing with it in. As soon as it was out she clamped back on the boob like the last couple of weeks hadn’t happened.
Josh knew we were coming back on the Sunday, 11 days after leaving, but didn’t know when and I was delighted to surprise him and Scarlett after we had got a cab back home. I held my precious cargo very close during that journey and as we stepped through the front door I burst into tears. I was so happy to be home.
Ivy was too…
We weren’t just lucky. A combination of Ivy’s fighting spirit, excellent NHS care from the team at Southampton PICU and timing meant Ivy got better quickly. The nursing stuff told me that they see cases like hers all winter. There was some really poorly kids in the unit and speaking with one mum whose baby’s was even younger than Scarlett made me grateful to have my girl ok. With the exception of that first night, I never allowed myself to think the of the worst situation throughout this time and all the conversations that I had with the healthcare professionals were always about when she got better and looking for small signs to show that she was improving in health. I cried on that first night and when we arrived back home, but didn’t allow myself to get upset apart from that just so I could stay focused. It was the way it worked for me as I was on my own in a city I didn’t know, surrounded by kind people I didn’t know and needed to be there for Ivy rather than be sad on my own. I’m sure that if I wanted to bawl my eyes out at her bedside each day that would have been OK too but daily video calls with Josh and Scarlett kept me going and everyone was so friendly and helpful. The staff at Southampton are truly amazing and the Friends of PICU charity meant that little touches, like a handmade blanket and little elephant cuddly toy made the bed feel a little more like home.
The star was Ivy. She’s thriving now and really chunky – just like a baby should be! That grey face is pink again and she smiles non-stop. Her first smile came the week after she was discharged and she hasn’t stopped since.
Thank you for reading. I found it cathartic to share our story and it’s given me a little closure about the guilt I felt.
If you fancy donating to www.friendsofpicu.org.uk there’s a link below.
Friends of PICU is a registered charity that was set up in 2006 by parents of children who have been cared for on PICU and nursing staff from the PICU. Friends of PICU aims to support the children and their families by providing vital equipment and services that are not always provided by the statutory authorities.
The PICU really appreciates the amazing support received through the charity as it makes an important impact across the whole of the unit and the excellent level of care which can be provided to the children and their families. Friends of PICU contribute to every part of the specialist care – no patient will pass through PICU without being helped in some way by equipment donated, or benefitting from the additional nursing training and education that the charity pays for. All emergency patients that are retrieved by ambulance travel in a dedicated ambulance donated by FoPICU and any parent able to stay in on-site accommodation near to their child does so because FoPICU supports and maintains it.