Spaghetti Junction: Our First Hospital Stay

Recently our Reuben has been in the wars. Our poor baby took a turn for the worst last week and honestly, we were scared to death. I couldn’t bring myself to let people know on Instagram until days later as I was scared of what people thought. That crippling mum guilt nearly sent me over the edge; how could I have let this happen? Is this my fault? Have I looked after him badly? Our boy lay screaming on a hospital bed, naked and purple in the face and all I could think about was the possibility of living life without him. A possibility I couldn’t even imagine. I don’t think I could.

It all started when I posted a story on Instagram about his silent reflux; the doctor had refused to give me ranitidine telling me ‘all babies cry’. This doctor, whom I had begged the previous week, sat watching me sob my heart out because how could I survive another night watching this little boy scream in pain? What sort of a mother allowed that? He asked me if I was a first-time mum and when I confirmed that I am, he proceeded to tell me I was being too anxious and that babies can be hard work. If I wanted anything more than Gaviscon, I had to take my baby to urgent care. My argument here was why on earth would I take him there when he’s had zero vaccinations? The very last thing I wanted was to expose our perfect boy to all those viruses and infections that linger in children’s waiting rooms. No thanks. I’m already very, very aggy about germs so the thought of this sent me over the edge. I had the health visitor coming the next day so I decided to see what she recommended. I could handle another night.

After another unsettled night, 9am came and our HV arrived. The first thing she noticed was a small mark on Reuben’s leg; a tiny bruise. We hadn’t noticed it ourselves so this was a huge shock and honestly, what the Hell do you say? She looked at me and I found myself actually wondering if she thought we had done that. Fortunately, she immediately said she has seen this a hundred times before and reassured us that it wasn’t anything to worry about, we just needed to get him checked out at Urgent Care. For the sake of poor children like Baby P, I decided to go to Urgent Care that afternoon. Obviously as a parent your guard immediately goes up and I spent the remainder of the appointment studying our HV’s behaviour, her eyes… Did she think we hurt him? Does she think that we gave him that bruise intentionally? I’m not sure what’s worse… Knowing he had a mark on him or being judged because of it. I promise I don’t beat up my child.

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The bruise

 

As the HV held Reuben, I just watched him and couldn’t help but fear something. I don’t know what I was scared of but I had this strange feeling that something was wrong. Something in me made me pack extra bottles, sleepsuits and I even put his new SleepyHead in the car along with extra blankets and nappies. I can’t describe the feeling and as I was packing, I could tell my other half was wondering why I was packing for a long stay… My stomach just felt funny and I couldn’t put my finger on what was different about Reuben, but something was amiss.

And I was right. We got to urgent care and I didn’t even get to sit down in the waiting room. From triage, we were whisked straight into a bay where a doctor saw us within minutes; I felt dizzy with confusion because all I’d said was that he has this little bruise and a silent reflux. I’d asked for ranitidine and explained that we think the bruise was caused by the straps on the Mamaroo (I’ll come to that) but all of a sudden the doctor was pressing his skin and looking worryingly at his legs. I frantically asked him what the Hell was going on and he explained that Reuben’s heart rate was soaring and that the mottled rash all over his body wasn’t disappearing under his hands. What does this mean? Are you trying to tell me that he may have meningitis? Is he going to be OK? The doctor genuinely couldn’t tell me. His exact words were “it’s 50/50” when I asked if it was meningitis. Terror. Just pure terror.

They almost immediately got us onto the ward where we were greeted with 3 nurses and a senior paediatrician. They stripped him down further and basically barged me out of the way. I was allowed back to his side after they’d done their observations, just as they were beginning to put a cannula in his hand and in his foot. Reuben screamed and I mean screamed the place down as they took blood from his hand; not just one little bottle though… They took at least 6 bottles of blood drop by drop. It was excruciating. The boy had actual tears on his cheeks. He is only six weeks old… My heart tore clean in two.

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Most of the wires were concealed underneath the towel as I couldn’t bear to look at them.

 

Naturally I asked a million questions but the doctor couldn’t answer me. She explained that these blood tests were checking for a variety of infections and that we needed to get some antibiotics in him as soon as possible. The nurse hooked him up to a saline drip and I still didn’t really have the foggiest what was going on – I’d only gone in about his reflux! The antibiotics arrived (Cephalexin) and he finally settled. I knew that I had to stay calm as my emotions transfer to him but inside I had just died a million deaths. Seeing your baby being poked and prodded is horrendous, needles sticking out of him, wires tangled around his little body… The nurse actually said ‘it’s like spaghetti junction’. His daddy had arrived and we were told Reuben had some sort of infection but what it was was unknown until yet more tests had been done. As parents, we naturally feared the worst and asked if this infection was life-threatening… “It’s hard to say”. To me, that doesn’t mean no. It means maybe. And I fell to pieces.

The signs of infection were the raised heart rate and the mottled rash. I felt like the worst parent in the world for not doing anything about the mottling as I had been told it’s fairly normal – when babies are cold or upset, they tend to mottle – but I felt even worse when they asked if he had been in contact with anyone with a cold sore… Me. I had one when he was 2-3 weeks old as I was so run down. Wonderful. So it’s my fault then? Obviously it could have been down to anything or anyone but I’ll always feel responsible.

At this point we had a few things going on:

  • His heart murmur that had been diagnosed a week earlier
  • Silent Reflux
  • Infection

We then got told that he had a cows milk protein intolerance so we have changed milk and we were also given ranitidine, so my reflux prayers had been answered (for now). But we needed to get rid of this infection ASAP so we were transferred to a different hospital where we were told he would be staying until further notice. Upon entering, we were told immediately that he needed a heart echo done at Alder Hay Children’s Hospital in Liverpool as a matter of urgency the next day and that Reuben needed to start another set of antibiotics (Amoxicillin) just incase he had contracted Listeria, a very rare disease that all babies are treated for regardless of whether they have it upon entering hospital for any prolonged stay. I was worried as I am very very allergic to all strands of penicillin but this hasn’t been inherited, thankfully. We were so thankful that the doctors were immediately treating him for every single infection possible, but there was just one that we couldn’t treat yet: bacterial meningitis on the brain. It was still a real possibility. What would you do if there was just even the slightest, very slightest, possibility that your child had this? Because whatever you just thought is exactly what happened. All the emotions, all at once. We thought it would just be a standard blood test to diagnose or even better rule out this horrendous illness, but I was wrong. I was met with the words “you’ve had an epidural haven’t you?” And that’s all they needed to say. I needed holding up. Please, please God tell me that you aren’t going to inject a needle into my baby’s spine? We were told this couldn’t be done until after Alder Hay as they needed time to check the blood results; if that bruise was as a result of clotting, then there’s no way they could inject anything anywhere for obvious reasons.

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Being transferred to a different hospital

 

So we were stuck there overnight. Only one parent could stay so it was me. Luckily I felt a lot calmer at this point and the nurses were lovely. Parents don’t get fed or watered on this ward but I didn’t care. How could I eat? I thought I’d never have an appetite again. In the morning, the ambulance arrived to take the nurse, Reuben and I (as his Daddy got a head start in the car straight from home) to Alder Hay. We had only waited about 10 minutes in the cardiology waiting room when Reuben’s name was called. Inside was just the most amazing room… As it’s a children’s hospital, they had blue, twinkling sensory lights in the walls and above the bed and a projector showed a video of fishes swimming in a colourful reef. Immediately we relaxed as Reuben was mesmerised! The echo (heart scan) was incredible as was the doctor who explained that the symptoms Reuben was presenting were absolutely nothing to do with his murmur. He does have 2 holes in his heart. One is an ASD, which many of us are born with but they do just close up naturally. ASD’s aren’t much of a worry as your atriums are low pressure. He also has a restrictive VSD, small and also not much of worry. These are also extremely common from birth and it should close up by itself. If it doesn’t, it just means we have to be super vigilant when he is poorly and we have to make sure he has ‘impeccable’ dental hygiene to prevent infections getting to his heart and lungs. The photos below are of Reuben in the baby pod on the way to Alder Hay and during the echo.

I honestly can’t explain how amazing Alder Hay and all the staff there are. I was worried about going just because that’s usually where very poorly children go, it was a scary thought that we needed their care and also because of recent events; I just felt anxious going. I shouldn’t have, it’s amazing and I can’t wait to go back for his next check up.

So phew! Heart problems aren’t really problems. What next? The dreaded lumbar puncture. We were advised not to go in with Reuben and actually to leave the ward… I was scarred before they’d even done it but we followed their advice and went to sit in the canteen. They say that the babies only cry because of the position they have to be held in (face to knees, curled up and still) but still the idea of a needle in his spine isn’t something that I could digest easily. That night, Alex wanted to stay over, both because he wanted to step up to his responsibility as his Daddy (even though I said it’s OK, I would stay) and because he knew I hadn’t eaten or slept. And so off I went home.

The next day was much brighter; the bloods came back negative which meant no worrying infection anymore but we were awaiting the lumbar puncture results. The only hurdle was this bruise… The words “investigation” and “questions” were being thrown around. We were asked to bring in the Mamaroo which is near on impossible (it’s a big piece of kit plus we live ages away from the hospital we were at now) and I just felt like they were trying to prove I had inflicted this (albeit tiny tiny tiny) bruise on my child. I work with children, I understand safeguarding so I completely get why these checks need to be done (there’s a new piece of legislation about immobile babies under 6 weeks – read up on it, I didn’t even know it existed!) but to be on the receiving end of this is just horrible. What if they don’t believe us? Are they trying to catch us out here? The consultant said it was “for Reuben’s safety” which immediately got my back up. My child is perfectly safe, thank you. I knew deep down they were just doing their job but, place yourself in my position. There were children wandering around on that ward as young as 3 whose parents had gone home. There are children out there who regularly turn up to school in unwashed clothes with hungry bellies and no dinner money. There are children in this world who are abused day in day out, neglected and uncared for and you’re persecuting me for something I’ve explained countless times. The straps on the Mamaroo are very coarse and I wasn’t happy with it when we got it. Reuben was it in the day before kicking and screaming and I think he’s nicked his leg. Luckily, they understood and we were out of the hospital that day.

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Just before Alder Hay

 

The words that will stick with me forever are “it’s like spaghetti junction” because that’s not only how it looked but how it actually felt. The wires criss crossing across his body, trapping him down to the bed, holding him hostage in this position, attaching him to machines that beeped unnervingly and that spat out numbers that I wished I knew the meaning of, were more than just wires to me. We had no idea what was wrong with our baby and the list of possibilities raced through my mind at high speed like cars at a busy, confusing cross roads. The less the doctor told me, the more cars passed through my brain and it made us dizzy, queazy at the slight possibility that this wasn’t fixable. The wires were fixed into his skin, he was reliant on them and that was just the worst feeling; I couldn’t do anything to help this innocent soul. I could only make sure that the wires, like spaghetti, didn’t strangle him as he thrashed his body from side to side… Was he upset? Was he in pain? I could see him looking at me through screams and tears willing me to do something, to pick him up but I couldn’t. I don’t think my mind will ever be the same. I was already very anxious as a new mother. We’re all anxious to get it right, to do our best, to give our babies the absolute best of everything but what do you do when your best isn’t good enough? What do you do when a doctor can’t actually tell you if he’s going to be OK? If cars resemble worries then it’s rush hour all the time inside my brain and I don’t think I’ll ever be the same again. My anxiety has just multiplied, traffic races beyond a hundred miles per hour and I just can’t bear seeing him upset. It’s all very new and we had a tough time at the start with my horrendous recovery so I am extremely over-sensitive and paranoid anyway but this is a whole new level.

Eventually we were given the diagnosis of Sepsis which sounds terrifying but when caught early, it’s treatable and is surprisingly common. Also, we have been given ranitidine, gaviscon and a new milk that breaks down the protein more so that Reuben can handle it better. I’m so so glad I trusted my gut and I hope to God that Reuben never has to go through that again but I know that if we do, our NHS is absolutely incredible and we are in very safe hands.

 

Thank you for all your kind messages on Instagram, we are so lucky to have such an amazing following

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