Prematurity – NICU & Beyond – #worldprematurityday2018
I have written many many times about my twins being premature. If you want to read our story then you can here. But for today, on World Prematurity Day I wanted to join in with the conversation going on on blogs, social media and probably in person too. The wonderful charity Bliss (a charity for babies born premature or sick) are heading up that conversation with their hashtag #prematurityis. 15 million babies worldwide are born prematurely so imagine the amount of stories out there about these amazing tiny little humans! There are still so many stories to tell and so much to talk about.
I think I thought when we walked out of the hospital on the day that Little Lady was discharged our premature baby journey was over, we had done it but two and a bit years in I have learnt that is not the case at all. Here is what #prematurityis to us.
The first time I saw her
‘Do you want to come and see her’ the nurse had finally asked me after 12 hours of waiting in a hospital bed hooked up to a catheter. I did, I so desperately did. All I had was a photo. But I was scared with what I was about to be faced with. My husband, best friend and the nurse helped me into a wheelchair and we headed to the Neonatal Ward. It all seemed so alien as we went onto the ward, little did I know then that it would be the place that felt most like home for the next 9 weeks. There she was, in her incubator, in intensive care fighting for her life. She was hooked up to so many wires, her tiny hand already pierced to get her medication into her. She had caffeine to help keep her heart working and so many other drugs too. She had a feeding tube to get 1 ml of milk in to her undeveloped tummy and she had a huge mask on giving her the oxygen she needed. I have never felt so many emotions all at the same time. Right then that was what prematurity was to me.
4 weeks old
Four weeks on Neonatal was definitely feeling like home. Every day I travelled half an hour down the motorway to be with my baby girl. By now I was chatty with the nurses, I wasn’t scared of the beeps anymore and I could change her nappy and give her her tube feeds. Daily Doctor chats were now normal and holding her head still for brain scans didn’t faze me. Every day I ran on pure adrenaline expressing milk for her in the back of the car, rushing from Little Lady back to Little Man and back to her again. She had been and was a warrior. She moved from Intensive Care to High Dependency and we had daily cuddles. There were two steps back after every one step taken but there was hope and that meant everything.
8 weeks old
The Doctors had said they were ready to discharge her and we were over the moon. Little Lady had fought hard and she was now feeding on her own, breathing on her own and smashing life. We had our baby first aid training, we were given bags of meds to take home and then I changed her nappy as we were about to leave and found a hernia. Before I knew it she was being put in an ambulance and being rushed to a specialist childrens hospital. Our dreams were crushed. She wasn’t coming home with us. The operation was simple, the anaesthetic was not. She was very little and the medical team were really unsure how she would react to it but there was no other option and she had the op. She made it through by the skin of her teeth and 3 days later was sent back to her original Neonatal.
Taking her home
At 9 weeks and no hernias Little Lady was finally ready to come home. As I said goodbye to the nurses I couldn’t quite believe I could finally take her home to her brother. We could finally be a proper family and she would finally be with us all of the time. Meds and instructions in hand we left the hospital and at that moment everything was perfect.
A year later
We had had her at home for a year and I naively thought that that year would be easy, it wasn’t. We had at least two appointments at the hospital every week for the first six months. Extra vaccinations, the most horrific eye tests, heart checks, lung checks, the list was endless. Little by little though things got ticked off the list. She was discharged from each appointment until we were only left with annual consultant appointments and physio. The first winter was hard, after having chronic lung disease her lungs were still weak so every cold was more like flu but eventually her immune system started to strengthen. She started nursery which she loved and this bright, happy, beautiful little personality shone through.
2 years later
2 years ago last month we bought her home. In the last 6 months she has been diagnosed with hyper mobility which is very common in premature babies. She has had magic shoes to help her with that and not long after her 2nd birthday she finally took her first steps. Now there is no stopping her and her magic pink boots! But her prematurity is still with us especially me. As is common with a lot of prem parents last week I was diagnosed with PTSD and flashbacks to the Neonatal days are a big part of that.
The main thing prematurity is to me is my little girl; my strong, fierce, always smiling little girl. Having a premature baby is scary but it’s also inspiring. Those tiny babies will shock you every day and show you just what it is they can do. They will come out fighting whatever the outcome because they fought to stay.