My Baby is Sick and I’m Not OK

I was unsure whether to write this, and then whether to publish it. But it’s part of our story, and that’s now part of me. So here goes… It will be long and there won’t be many photos but I guess I’m not writing it to entertain.

My son’s birth was awkward and exhausting but not overly traumatic. Two weeks waiting, a long induction, a stagnant labour and a category 2 c-section brought us our son at ten to one on a Wednesday morning. By the time he’d arrived, the rest didn’t seem to matter.

Labour

We rang family at the earliest hour that seemed reasonable, and up to the hospital they came, bearing gifts and claiming rightful cuddles, as my catheter bag still swung merrily to and fro. Joy, joy, joy, to present my newborn son to his loving family. The day passed in a haze of visits and watching him sleep. A few midwives commented on his slightly fast breathing, but all was otherwise well and he was a bonny boy at almost 9lbs (4kg).

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The night was exhausting; still recovering from surgery, enduring regular checkups, making up tiny cups of formula and attempting (unsuccessfully) to breastfeed, like most new mums I was awake almost all night. My husband had popped home for just a couple of hours’ sleep, so it was just me and my beautiful boy.

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At some early hour, a midwife told me she’d mentioned my son’s fast breathing to a NICU nurse. I didn’t know what one of those was and was half asleep anyway. An hour later, the NICU nurse in question popped her head in and asked if she could borrow my baby to check his bloods. I can honestly say that I wasn’t the slightest bit concerned. Everyone was so calm, my boy was so pink and plump, and I was shattered. In my head, an exhausted, confused, lonely voice said, “At least you can have another hour in bed…” Later, that phrase would circle endlessly round my head, accompanied by crushing guilt.

When I was up and had managed my first shower, I knocked on the door to NICU – which I now knew stood for Neonatal Intensive Care Unit. My son, the lovely nurse told me, had ‘sticky’ blood. His blood sugars were low and his breathing a little fast. They were giving him antibiotics (due to the lack of amniotic fluid present at birth) just to rule out infection. Again, no one seemed too worried, but he was now plugged into a drip that would boost his sugars. Sitting there by his little cot, not one day old with a needle in his arm, it suddenly hit me that he wasn’t too well, and the first of an absolute ocean of tears began to fall. His dad arrived soon after, and we entered what I can honestly say were the worst few weeks of our lives.

The next day, 48 hours after my surgery and less than 24 hours since he’d entered special care, our son suffered two seizures. We were there. The nurse was holding him, and my mum had come to visit as his blood sugars had been improving. I don’t want to write about that moment, it was the worst thing I’ve ever seen and it still makes me feel sick to think about it. The nurses were amazing, they were calm and collected. In the next  hour he was given sodium and anti-fitting medication, he was hooked up to oxygen, installed in an incubator with monitors and a feeding tube was attached. My perfect baby was now a mess of tubes and wires, with alarms beeping whenever his oxygen saturation dipped.

Incubator

We couldn’t hold him. I couldn’t feed him. I couldn’t speak to anyone because every time I opened my mouth, I was unable to articulate the fear and the pain. All sorts goes through your brain – was it meningitis? Epilepsy? Was he brain damaged? Would he ever walk or talk? Thank God, it was none of those things. But we didn’t know that at the time, and reassurances don’t mean a lot when you’re watching your son through plastic and  his hands are purple with bruising from cannulas and his feet are speckled in red dots from a hundred blood tests.

They tried a lumbar puncture (needle in the spine to measure pressure and take fluid samples) twice, to rule out meningitis, but he was ‘too distressed’ both times to cooperate. My son was distressed. By this point, the paediatricians were almost certain that the fits had been caused by changes to his sodium levels due to all the liquid in the glucose drip, but an MRI was arranged to rule out other things.

And if his brain was damaged? It was my fault. I had eaten badly in pregnancy. I hadn’t noticed my waters breaking and he might have caught an infection. I had allowed myself to become dehydrated during the three day induction. I should have persevered when a section was suggested. I should have tried harder. I should have looked after myself and my unborn son better. Wallowing in self-pity and recriminations was all I could do between watching my son, wiping his dry little face, cleaning his nappy, and the burden of expressing milk.

Before the MRI took place, we were discharged from NICU. A few days of torture had passed, tubes had gradually been removed, breastfeeding was progressing (thanks partly to a tongue-tie removal), and we even had a little family sleepover together as a trial run for going home! The nurses couldn’t do enough for us – showing us how to give him a bath, teaching us how to make up formula (as he still needed top-ups to make sure of calorie intake) and pushing round beds and cobbling together a pretend little bedroom on one of the wards. This was because they understand.

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They understand that after a while, the beep of the apnoea monitor is a reassurance instead of a worry. The oxygen tube hanging a couple of feet away is a relief. The qualified nurses and paediatric team on hand at any hour of the day or night is a luxury but you don’t know any different. So the idea of taking your little person home to a plain old bedroom with a moses basket and a cuddly toy is terrifying beyond measure. How will I know if his sugars drop? How will we monitor his salts? What if his oxygen saturation levels drop in the night and we’re asleep? So over a day or so, as our son’s condition improved, the nurses gradually stepped back and supported us to step up as new parents.

Eight days after he was born and eleven days after I had arrived, we left the hospital with our son. The sun shone, he cried when we put him in the carseat, and home we went. It was painful but joyous to sit in our own home, with our two lovely and neglected cats, cradling our son. He was all the things newborns are: fragile, precious, uncomprehensible and fascinating. We didn’t advertise ourselves for visitors but gradually started to see family and a few friends. It was still very new, very tiring, and very raw. He was hard work, as they mostly are, but at least we were home.

A few days later, it was time for the MRI. Back to hospital we trudged, for our baby to be sedated – as babies are notoriously uncooperative regarding lying still when asked! After the scan, we were told the results would go to an expert in Southampton (we live on the Isle of Wight) and she would analyse the results and get back in touch with our hospital. The day of the scan, our own radiologists gave us some initial feedback – they had seen a spot on his brain that looked to be a likely bleed. But they couldn’t tell us any more than that for now. And they couldn’t say what the effect on his development would be. Then we waited ten days to hear the rest. Can you imagine? Ten days, wondering if our precious, week-old baby was brain damaged.

When the MRI results came back we were invited back to see the paediatrician, who was excellent at reassuring us and explaining the results. We were shown the brain scans, bits were pointed out, what was normal was explained and what was different was calmly shown and discussed. Our son’s brain was mainly normal, with a spot that was likely to be a bleed but that didn’t warrant concern. His development would be monitored with follow-up appointments with the paediatrician. Gradually, over weeks and months, we stopped seeing our son as a sick baby and could see him for what he now is: a beautiful, happy, healthy boy. Yes, we battle eczema and allergy, but he is not in danger. He is not damaged, hurt or broken.

Now, when I see parents with poorly babies on the TV or in daily life, my heart lurches the same way it did in the hospital all those months ago. Our experience was terrifying, heartbreaking and unbearable, so how do the parents of even sicker babies cope? I am fully aware that our exerience was nothing compared to what some parents go through. Well, I suppose they cope the same way we did: you just love and love and love your baby and everything else just keeps plodding on. The sun will rise and set, and each second, minute and hour will tick by while you wait, wait, wait for someone to say, “He’s better now, he’s OK.”

For us, that day arrived and we have our lovely boy. For others, things don’t go so well. Please keep your hearts open and your compassion at the ready for the parents of poorly little ones, because they need it so very much.

xXx

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