NICU Talk, Uncategorized

Our Red Room Story

My first sons birth had been a dream. After a four hour labour, I sat looking out of the hospital window, watching the sun go down, with my newborn baby in my arms. I remember thinking what a beautiful end to a beautiful day. So peaceful, calm and life changing. A perfect moment that I’ll honestly never forget.

Poor Baby J didn’t get his perfect moment. Born by emergency caesarean at 27+2 weeks, just before midnight, Baby J was resuscitated moments after birth.

I’d heard my baby let out a tiny cry (to my relief) and presumed this meant he was alive, but only weeks later did I understand he was born floppy, and needed resuscitation. I still, even as I retell his story, don’t quite understand what happened in those hours after his birth. A mixture of drugs, high emotions and general shock meant I couldn’t take it all in. But perhaps, in hindsight, that was a blessing.

As I’ve said before, my professional background is not in medicine, so forgive me if some of the terms or details in here are medically incorrect. I’m no NICU expert. Just another Mum who has seen her baby go to hell and back in what should have been such precious early days.

It was hours before I saw Baby J again. I’ll never forget the dimmed lights, beeping of machines and the way the doctors hurried around the Intensive Care Unit (Red Room) in such a silent, calm manner as I was wheeled down those corridors for the first time. Shit, this is serious.

Baby J was at the back of the room, crowded by Doctors and nurses who slowly moved aside as I approached. Seeing him took my breath away. There was my baby, covered in wires, with a tube in his mouth, just lying silently. Not moving. No newborn cries. My poor, poor baby. His skin was almost opaque, his eyes still fused shut, and he weighed just 950g. And yet he was perfect. A tiny, formed human being. He had eyes, ears, a nose, legs and arms. I could even see his heart beating under his skin. My baby.

Jack was placed on an oscillator soon after birth, which I had been told was a ‘last resort’ for breathing. His little chest buzzed from the vibrations of the machine. Over the next 3 days, Jacks fight for life stepped up. His infections markers where incredibly high and sepsis was suspected, so he was pumped with morphine amongst various other drugs to fight it out. Then his lungs collapsed. Followed was fluid on the lungs, then two chest drains in either side of his lungs. Then more blood transfusions. Then more wires. More serious. I struggled to take it all in. It honestly felt like I was in another body looking in on someone else’s life.

On day 3 my husband and I had finally fallen asleep in our room on the ward when we were woken by a knock at the door. It was 3am. The nurse poked her head in and told us Baby J was very poorly, and would we like to come see him. In fact, she said, our consultant insisted we come see him. We made our way to the red room within minutes and walked in to see half a dozen doctors and nursing staff around him. At 3am. That’s when our consultant spoke to us and gently suggested, should we be religious, now might be a good time to get a priest to him.

Typing those words is painful. To think we were so close to losing him takes my breath away nearly 5 months on. But at the time the haze of NICU meant those words didn’t really sink in. Only looking back weeks later did I really appreciate how very poorly my baby was. He wasn’t just poorly, he was on the verge of slipping away. In hindsight, I’m glad that we never knew the real depth of the situation back then. Sometimes ignorance really can be bliss.

In the days that followed we continued to see Jack fight infection; saw little improvement with his breathing; had chest drains removed; consequently had them put back in; placed under a jaundice light; plus his nasal cannulas had rubbed his nose so much that plastics were called to check his eroding septum. Then came the cranial ultrasound. A routine head scan to check for bleeds on the brain. Premature babies were high risk, we were told. And more so babies who were on oscillators, which Baby J was still dependant on. The scan showed a small grade 1 bleed, very common we were informed. We actually weren’t overly worried; it was the lowest grade and would be checked again in a week. It was just another issue in the long list of things that in truth, we didn’t really understand. So much information is hurled out you in all directions that it’s hard at times to breath it in. All we knew was our baby was very sick, but was in very good, safe hands.

Day 10 saw the repeated head scan. Alone, as my husband had gone back to work, the consultant asked if I had my husband with me. When I told him he was working, the consultant said he’d prefer to talk to us when we were both together with Baby J. A cold flush came over my body and I insisted he spoke to me immediately. ‘It’s not good news,’ he began. Words I’ll never forget. The bleed, he explained, had worsened. It was now a right sided Grade 4 IVH. Baby J, he said, would in the very least, have a weakening down the left side of his body. In the very least, he stressed. I now know he was referring to Cerebral Palsy. He also had cysts forming on the brain. At the time all I knew was that I was heart broken. My poor, precious, beautiful baby. Why him? Life was dealing him a cruel hand at just ten days old. I guess it’s a selfish was to think when other mothers didn’t have their babies; and we still had Baby J. But the fairy tail baby dream we had been hoping for just didn’t turn out how we expected. No mother expects that.

Despite the news of the brain bleed; Baby J’s remaining time in the Red Room was relatively straight forward. He suddenly and miraculously starting picking up. His breathing improved enough to come off the oscillator. His chest drains were gradually removed. His blood pressure stabilised. His infection markers improved. And we slowly saw the various fluid bags he was connected to lessen.

We spent 11 days in total in the Red Room. It felt like a life time. But seeing Baby J move to the Blue Room (High Dependency) felt like a small miracle. We didn’t expect to be leaving the Red Room so quickly. Even the Doctors didn’t. Part of me went into frantic panic as to whether the care he’d receive in the Blue Room would match that of the Red. But of course the sheer relief that we were out of Intensive Care over shadowed all other emotions.

Those 11 days of Red Room NICU we’re without doubt the most tense, frightening and stressful moments we were to experience. What followed was a relatively straight forward stay in the Blue Room (High Dependency) before we headed to SCBU (Special Care Baby Unit) Of course we still went through various amounts of stresses for the rest of our time there as any parent does, but at least for us there seemed light at the end of the tunnel for our beautiful Baby J.

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