When I look back at the Insta photo I posted of Billy on Friday 3rd May, his 19th day in the world, my heart momentarily stops. Feelings of dread flood into my brain and I have to catch myself.
I couldn’t see it at that exact time, but writing this post and scrolling back through photos it seems so incredibly obvious just how ill he was.
We were all completely oblivious. He wasn’t screaming out, he wasn’t being sick, he wasn’t showing any alarming signs of illness.
Seeing that photo again tonight, the enormity of how unwell he was and the pain he must have been had really hit home.
The onset of reflux
We already knew we were dealing with a few issues. Tongue-tie, latch problems, the onset of reflux, which I knew in my heart, was a CMPA and soy intolerance, having been through all of this before with Maddie.
We were on the case for Bill. We’d been to the GP two days prior and a prescription of Nutramigen had already been processed and collected for the times I’d need to top him up in the weeks to come.
I honestly thought it was reflux.
That night…
We have a routine in our house, one we’d perfected with Maddie and one that we’d just started out on with Billy.
I’d pump at 10pm, get my head down, and leave Jamie to feed him the last bottle of the day at 10.30pm. I finished pumping that night when Jamie bought him up to me and left the room to have a shower. All of a sudden Billy was screaming. The sound ran through my bones. Instinctively I knew something was very wrong.
I grabbed the thermometer and took his temperature. It was 38.8. I placed him down on the bed and ran into the bathroom screaming at Jamie that we needed to get to the hospital.
I’ll be honest: I lost the plot a bit at this point; I was beside myself. All I had to go on was his temperature and the sound of his cry, but I knew. Somehow, I just knew. I shouted out instructions, frantically packed a bag, pulled some jeans on, grabbed a shocked Maddie sleeping from her bed, and bundled us all into the car to get to A&E at breakneck speed. Billy screamed all the way. It was terrifying.
I called 999 in the car as Jamie drove, but there was nothing they could do unless we pulled over. Epsom hospital is a 15-minute drive on a good run, it was 11pm at night, and it would have taken longer to wait for an ambulance. Rushing him there in the car was the right decision. Meanwhile, the switchboard alerted A&E and once we got there, we were shuffled into Resus to meet whole team doctors and nurses waiting for us to arrive.
An overreaction?
At this point, staring at all those worried faces, I started to think I’d probably overreacted. We suspected reflux was in play, and we knew how much pain Maddie went through with that.
They took Billy and placed him on a raised cot bed with lots of equipment overhead. It was nearly shoulder height, so they could work on him without having to bend over.
The clock ticked by. 1am… 2am… 2.45am… Maddie had been a trooper. The clocked turned 3am and with no real answers or word from the medical team, I told Jamie to take Maddie home. She’d behaved so well in the cubicle we were all in, but it was unfair to keep her up all night.
My parents got the all-time dreaded middle of the night phone call and made their way to our place to look after a sleeping Maddie while Jamie did a U-turn back to the hospital.
I was left in the cubicle on my own, freezing in my nightie and jeans. My boobs were busy swelling and prickling telling me he was well overdue for a feed. I wept to myself sitting on the bed while they worked on him next to me. He was only right there, but he seemed worlds away.
With Jamie away, I had nothing else to do but sit quietly, and I overheard the doctor on the phone to a consultant she’d woken up to ask for advice… They talked about a bowel condition that she said ‘was not good’… She mentioned calling St George’s hospital for a possible transfer. All snippets of conversation I could hear from the bed I was sitting on terrifying. They couldn’t figure out what was wrong.
Lumbar Punctures & X-rays?
An X-Ray machine was wheeled in, along with full-body armour for me to wear while I held him.
I was sent out of the room while they attempted a Lumbar Puncture – apparently too horrific for parents to watch. They attempted this three times but failed. He was too tiny and his veins were just too small.
Jamie arrived back and the clock continued to crawl by…
At just after 5 o’clock in the morning a urine result came back. They confirmed he had a UTI.
We both breathed a sigh of relief. Only a urine infection! ‘Okay, well, antibiotics and home then?’ I said to the nurse…
‘No.’ She replied. ‘You’re going to be here quite some time.’
UTIs and staph infections
It turns out UTIs are extremely serious in babies – especially newborns.
We were transferred up to the children’s ward just before 6am on Saturday morning. My eyes were so dry and tired they hurt. My breasts were full and sore. I was worried he hadn’t had any milk for hours and what affect that might have on my delicate supply.
Once in our private room, room number six, Billy was hooked up to an IV drip. Teams of doctors and nurses came in and came out. Four hourly checks, obs and meds – the cycle was on repeat while the rest of the weekend and the week that followed passed by in a sleepless blur.
On the second day, they found evidence of a secondary infection: staphylococcus aureus. Another lot of antibiotics was prescribed and administered. They weren’t sure if his original blood samples had been contaminated or whether he actually had the staph infection. They re-tested, and although the test came back clear, the lab said it was an organism that can hide behind the heart valves and show up as a negative. It wasn’t something they were willing to take a risk on.
Multiple combinations of antibiotics
My poor newborn baby was being pumped full of drugs, multiple combinations of experimental antibiotics at only two and a half weeks old. It was a horrific time.
Repeated failed cannula attempts left him sobbing real tears for almost an hour each time. The administration of antibiotics via a successful cannula left him screaming once the vein had started to break down, which meant a new excruciating cannula had to be fitted in another vein. His veins were so little, so fragile it was almost impossible for the doctors to get a line in. His arms were bandaged and every vest he wore had to be ripped to fit over his bandaged arms.
We weren’t allowed to leave the hospital for 10 days, and then we could only leave for a few hours at a time in between medication. I couldn’t leave Billy, as he was still solely breastfed. I didn’t see home or my own bed for a couple of weeks. It was grim.
There isn’t a quick fix for a UTI in a newborn.
After-care
Billy remained on antibiotics until he was almost four months. This was to give the body time to heal, so they could ultrasound and perform a cystourethrogram to test for urinary reflux.
Those tests and scans have been done, and we’ve been given the all-clear so far. The staph infection was fought and won, and the UTI was put down to just ‘one of those things’.
He has a nuclear scan called an NM Renal DMSA on 24th September. This is the scary one – to check for any lasting damage or scarring to the kidneys caused by the urinary infection. We’re staying optimistic that this will be the final hurdle in the saga, and we’re hoping and praying that the scan will be clear…
Looking back now it already seems a lifetime ago.
I feel as though I was cheated out of those first precious weeks. We didn’t have the chance to do skin-to-skin once we were in the hospital. None of his beautiful newborn clothes were worn; they were all at home in his drawers, tags still on. I missed Maddie terribly, and poor Jamie. He had very little time to bond with Billy. It turned out my beloved cat was at home dying of cancer too – and I wasn’t there for him for a large part of his last few weeks. I miss him dearly.
Billy survived though. We got him there in time. And we thank our lucky stars every day. He’s now a very happy and healthy little chap.
It’s been a tough few months.
Wish us luck for his scan next month.
