Cheryl’s Story | Triplets with Bronchiolitis (Part 2)
The 5th of December was the babies’ due date. I was gutted they were not safely at home with me where they belong for this milestone. After working so hard to graduate from NICU it felt so wrong for them to be in hospital again.
My mum and dad had been fantastic supporting our family through this time, taking me places, staying with me or the children, enabling me to be in so many places at once, whatever we needed. They had to quickly learn what they needed to do for the nurses and what all the machines were doing, staying for long days in the hospital.
My dad was at the hospital with the boys early that morning. They were much better than the day before. William took his 24ml bottle well and settled nicely again. His heartrate was around 120, Oxygen saturation 96. Frank was good but his readings were a bit more up and down. The doctors were pleased with them both.
My mum stayed to be with the boys so my dad could take me to visit Violet in Southampton. I was nervous to see her, but I had been so desperate to be with her. I got to give her a cuddle and it was so hard to put her back.
She was really good; her breathing tube was out, and her catheter was out. She was alert and doing well but she was still working hard to breathe so was not up to travelling back to Sussex. Despite this it still felt so wrong to leave her there when it was time for us to go.
They had also found E-coli in her throat swab, so she was now on antibiotics and in isolation from the other patients. My poor baby girl had so much going on. She had RSV + pneumonia which caused the Bronchiolitis, E Coli and Rhinovirus (common cold).
We had been ringing the hospital for updates morning and evening as we couldn’t be there every day. When I rang later that evening I was told it was likely that she could be intubated once again and that a decision would be made on the next ward rounds.
William remained kind of stable, the flow was increased slightly on his Oxygen but he was calm and happy. I slept over at the hospital with the boys, but things were starting to take their toll on me and I ended up having panic attacks in the night. I felt a lot of pressure to be there for them but all I wanted to do was run away and hide from it all.
The next day the boys were doing great! They were moved from the High Dependency Unit to a general room together as their risk was now much lower. William had all his tubes removed and both boys were feeding really well. Frank was back on form being a hungry boy!
Violet was put onto a new breathing mask to help her, but she was given a 50/50 chance of being intubated again as she was still struggling all day. It was almost a week on now and I felt helpless. Why wasn’t she getting better? Was she going to be able to fight this?
Just before midnight Chris had a phone call to say Violet had been intubated again. William was back on Oxygen via nasal prongs and it felt like things were getting worse again. Was this never going to end? Next morning the news was slightly more positive as Violet’s nurse explained that although she had been sedated to let her rest her body some more, the ventilator was not set very high so it was only giving a little bit of help whilst she did the rest.
I remember the Children’s ward was short staffed a lot of the time we were there. Chris had had a very sleepless night, running between the two boys either side of the room with their machines alarming all night, feeding and changing nappies, so I arrived to swap over with him around 10am.
I was greeted by the best surprise that the boys were actually ready to go home so we waited for their discharge letters, got all their things together and bundled them up into their car seats and were out of there… well at least until Violet were to turn up!
Chris and my mum looked after the boys at home, so I could go to Southampton again with my dad to visit Violet. Knowing the boys were home I managed to spend a longer time with Violet and speak to her nurse more in depth. Most of our updates had been a quick few minute’s phone call twice a day, as we didn’t want to take up too much of the nurses’ time. When Chris rang, I got the relayed version and when I rang vice versa.
It was hard to get a proper understanding of everything each day when you are already in a whirlwind of a rapidly changing virus with two of your other babies in another hospital, especially medical terms that you are not familiar with and two very different hospitals.
I managed to ask the nurse so many questions and found out that Violet was on Morphine and Midazolam to keep her sedated. I was told that Morphine could stop her from urinating so that is why she had a catheter in. They were also monitoring the volume of liquid going in and coming out. She was puffy because of water retention and was on Furosemide for this. She was on antibiotics for her infection and was having physio because her right lung was consolidated. They had also changed her formula to Infatrini Peptisorb to help her.
Days 8 – 12
On the 8th we were told that Violet needed another blood transfusion.
I was quite anxious to have the boys back home so I stayed in the bedroom with them all day. Chris travelled to Southampton to visit Violet and she had the blood transfusion whilst he was there. The next day we were told that she was doing so well that she might be ready to transfer the following day. She was extubated once again.
I remember worrying that she still wouldn’t be ready for this but knew she was in the best hands. The blood transfusion had helped, and she was doing well. On the 10th Violet was transferred to Chichester. She no longer needed Intensive Care!
It was an anxious time knowing she was travelling on those busy roads with none of her family with her. Chris met her when she arrived at the hospital as I had the other three children to look after. The relief that she was nearer home was amazing and signified that she was getting better.
We were expecting her to be put into HDU but she surprised us all and was well enough to go into a general room on the children’s ward on her own. Her SATS were good and she was just breathing in the open air with no breathing tubes or wires helping her out. Her heart rate was low on account of the sedative drugs still being in her system, but she was on the mend. She was on hourly tube feeds at first so that her body didn’t have to work too hard.
It felt like all the babies’ hard work of establishing feeding in NICU had been wasted and we were back to square one, but this was all part of the recovery. The Children’s Ward expect parents to stay with their children but of course, I had to be with the boys as well, so I got to the hospital when I could.
It felt amazing to hold her again. The last time I had seen her she was intubated and although she was peaceful it is really hard to see your baby like that. She looked so much better this time with her little rosy cheeks. I felt extremely guilty for only having been able to visit her twice whilst she was so poorly but part of me had been less worried about her than the boys because she was getting the best treatment and the time to completely rest and I knew she was in a superior hospital with greater technology and expertise.
The following day Violet had managed to take a couple of feeds via bottle so the aim was to get her feeding more herself now and stop tube feeding. Her milk had been changed during her hospital stay but it was decided to put her back onto her original formula to make it easier for us feeding the trio at home. I just needed to line their feeds all up once again somehow.
The consultants were really pleased with her, she had good SATS, her lungs sounded equal so there would be no need for any more physiotherapy – there was a slight crackle but nothing to worry about. He also detected a heart murmur but was not overly worried as it was probably just from her being so poorly. Luckily, she didn’t have one when we later had this checked.
He stopped her diuretic drugs and all was looking fantastic. At 3pm on the 12th December Violet was finally discharged home, just in time for Christmas. A few hours after she arrived home, in her Moses basket in between her brothers next to the Christmas tree she really smiled for the first time. I knew then that she knew where she was and was happy to be home.
It was such a stressful and worrying time and I could never fully explain the difficulties we faced or how we felt. Each baby’s experience of Bronchiolitis was quite different.
From William needing 7 days in hospital with High Flow Oxygen therapy and Frank just 4 days hospital stay with CPAP to help him, despite being so very poorly to Violet having gone through so much needing 12 days of hospital treatment with a lot of drugs, blood transfusions and mechanical ventilation.
All of that combined plus the errors made by our care providers was a lot for us to go through. It was unexpected and unknown. A parent’s worst nightmare is to see their child sick and needing hospital treatment. Nothing prepares you for it but to go through it with three of your children all at once feels like a massive test.
I guess it is one of the many challenges that comes with having Higher Order Multiples. You will feel so many emotions. You will laugh and you will cry. You will need to be strong and you will need to break down.
The amazing thing about babies, especially premature ones is that they are really, really strong. I didn’t really believe that ‘they bounce back as quickly as they go down’ until I witnessed Frank with Bronchiolitis. I thought carrying and birthing triplets was the hardest thing I would ever do but I was wrong. Helplessly watching my sick babies was.
The whole experience put everything into perspective and with Christmas right around the corner but having been the furthest thing from our minds, our only wish was to have everyone home and well. It really was the best gift.
Christmas 2019, quite a normal Sunday really… you know the scene, Christmas tree in the corner, decorations everywhere, a 2 (nearly 3) year old running around crazy with excitement, triplets sleeping soundly in their Moses baskets… 30 minutes later, a wasted call to the hospital, an urgent call to 111 and I’m sitting in the back of an ambulance with Violet and William on the way to hospital.
An hour later and they are both hooked up to oxygen machines and deteriorating rapidly. Less than 7 hours later and Violet has been put into a medically induced coma, intubated and we’re on our way to Southampton PICU.
Everything from there was a blur. I was due back to work that day (Monday) from paternity leave, Violet was stable, William was in hospital in Chichester and Frank and Betty were at home with Cheryl.
I have no idea how we coped for the next few weeks. Christmas was the furthest thought in our minds.
I somehow had to split into three – being a technical team leader whilst at work, parent Betty as if nothing was wrong and then be a rock for Cheryl. Whilst she was going through the emotional turmoil of blaming herself for not catching the Bronchiolitis, having to recover from her C-Section, parent Betty and deal with being apart from Violet, it suddenly took a turn for the worst.
Frank was admitted to hospital and started to have apnoea’s. Trying to be my normal rational, logical, optimistic self was nearly impossible. This was the hardest thing I’d ever have to live through. Most nights driving between work, home and hospitals were filled with tear fuelled rage and despair. I became emotionally numb and the inability to control the situation or to fix the problem was alien to me.
Writing this now, nearly a year later I have no knowledge of times, dates, duration. I’ve blocked it all. I was void and empty. In retrospect, the whole situation changed me; it hardened me, I don’t let myself get close to anything. Cheryl accuses me of being emotionless.
If my words and her post can do anything to raise awareness, it’s something. Multiples, especially when still premature are at highest risk. I can’t believe we didn’t know and weren’t informed when it’s such a common infection
With COVID-19 being a respiratory virus too, I can’t stress enough how much people need to stay home, wash their hands and wear a mask.