So t was very poorly. The consultant paediatrician said he was not likely to survive the first 24 hours, but he did.
He had a hole in his heart, his kidneys weren’t functioning properly and his lungs were very immature and kept collapsing. We were told the next 48 hours would be crucial. I had to visit the neonatal baby unit in my bed as I was still so unwell. I couldn’t cope with it though, I just wailed. I wasn’t allowed to touch him because I had ended up with a massive cold sore from the traumatic experience. Nothing prepares you for seeing your baby in such a desperate situation.
Machines were beeping and there were lines all over the place, in his leg, arms and neck. He was on a ventilator in 80% O2 and repeatedly given surfactant. He was being fed intravenously and was receiving blood transfusions for days at a time. He was under the UV lamp for jaundice but his skin was so paper-thin you could see through it. He was sooo small. I had the most overwhelming desire to smell him, I don’t know why…Poor baby wasn’t due til the beginning of April and here we were in mid December. I remember it was snowing outside and inside my boy was struggling for life.
Over the next few days he gradually stabilised only to get an infection that took us back to square one. I used to spend my days sitting by his incubator cutting down the smallest nappies you could buy and fixing them with tape to make miniature ones! we did all his nappy changing, mouth care and tube feeds, I even sterilised my little finger so he could suck it….
The pressure from the ventilator caused a massive bilateral inguinal hernia, they went down to his knees and would need surgery further down the line. His hole in the heart was repaired with drug treatment, thankfully. His blood gases and temperature kept going all over the place and he was regularly dosed up with courses of antibiotics like gentomycin. We had nearly two months of this two steps forward one step back routine. Instead of planning for the future we just took each day as it came.
on the 19th january he had an ultrasound on his brain which revealed three separate brain haemorrhages (we were not informed of these til he was 18 months old though!)
When he was well enough to tolerate milk I found it impossible to express milk (I now know I wasn’t getting the ‘let down reflex’ but at the time I felt like I was useless) so he went on sma and got 2mls every hour vis a nasogastric tube
He was also weaned off the ventilator and put on to a cpap machine, it gave him a piggy nose. He constantly had bradycardic episodes while ‘sleeping’ and was still oxygen dependant.
I got my first cuddle with him when he was 8 weeks old.
Around 12 weeks we graduated to nursery 2. This was a good step because if they thought your baby was going to die you’d stay in nursery 1. Both are intensive care nurseries but nursery 1 has more space to fit 12 people round an incubator for emergency critical care and nursery 2 was for stable critical care.
One parent we became friends with had her baby boy two weeks before us, and he moved to nursery 2 with us. He’d been a lot more poorly that t, requiring ops on his heart, lung and bowel. It was such a big day for her and baby, she was so excited!! A week later I overheard the dr on rounds say he had gone into heart failure and would be moving back into nursery 1. My heart broke for her. She never got to take him home, he died in her arms a few days later.
T was still oxygen dependant, but was tolerating food and putting on weight. When your baby reached a kilo it was tradition to make a chocolate ‘kilo’ cake for the staff, I made a chocolate fudge cake but, when weighed, it was more than a kilo (I think they only complain if it’s less than a kilo) T had a major reflux problem but his feeds were made with a thickening agent to minimise it. The steroids he had been on since birth onwards made him look like a chipmunk but I actually began to feel like we might get him home after all. His hernia by now were mahoosive!
As the instances of bradycardia lessened we moved on to nursery 3. We were on the home stretch! I also fell pregnant with my second baby at this point although I didn’t know it at the time lol
Nursery 3 was great! we had 4 weeks there and I got to hold him when I wanted too, I got to feed him, with a bottle!!! and I got to dress him up in mothercare premmie clothes (which were still way too big) and do all the normal looking after baby things and I could just cuddle him. It was when he got his first proper bath too!
We had him christened in the hospital chapel with one of his nurses and we had two christening cakes one for us and we gave the unit a chocolate christening cake. He was still on oxygen and half a million different drugs when we were eventually discharged but wahooo!
I had him home for 3 whole days before he went back into hospital for his bilateral inguinal hernia repair. He was in itu for 4 days after because he couldn’t be bothered to breathe (boys are lazy) but it seemed to work. We were home a week after that but then the hernia re-occured a month or so after and so he was operated on again in june. From July to december things were pretty quiet.
I gave birth to H on 7 December 1997 after a fairly stress free full term pregnancy (I didn’t even realise I was pregnant til I was over 12 weeks gone) he was a natural birth, no pain killers, no tens machine (took it off!! irritating as hell) and after 7 hours of labour I had a healthy bouncy 8lb 3oz baby boy. T wasn’t keen on this noisy creature though and would shoot it evil glares. H was breastfed and I finally understood why it hadn’t worked before when I tried to express milk for t and I also realised the let down reflex hurts!
I enjoyed having a nearly one year old and a newborn even though they did look almost the same size. I had no idea that on Christmas day the world was going to be turned upside down.