Archie, born at 25+2.
Just to set the scene as to how we got here again... I had my daughter Elsie in September 2007, at 28 weeks – my waters broke for no reason and Elsie was born. We spent 11 weeks and a day in Simpsons neonatal unit, and it felt like a long time. But we were delighted to take her home before her due date and she is now 4 and doing really well, very active, social and looking forward to school in August.
An appointment with the consultant afterwards told me that there was no reason it would happen again, and they would be supportive of us having another. Of course, our experience with Elsie, even though positive had a huge bearing on our decision – how could we know if the next baby would be early, and god forbid even earlier? So after 3 years we decided that it was now or never and was delighted and scared to be pregnant again, with the baby due at the end of September. Pregnancy was uneventful and then I had a test at 22 weeks as part of a clinical trial to see if I had a higher chance of delivering early. It was positive. I was devastated, convinced it was going to happen again. 3 weeks later, in June, Archie was born at 25+2 weighing 730g (1lb 9) and here we were again, on this rollercoaster with a son born even earlier.
We first met Archie with no clothes on, with only a bit of cotton wool to hide his modesty as his kidneys were so premature he was peeing as quickly as they could get the fluid in, so the first challenge for the team was keeping on top of this. He was also ventilated, Elsie never was so this was completely new for us. There were a lot of familiarities too – the teams were largely the same, and this gave us a great deal of comfort as we knew how well Elsie was cared for.
I had thought that being on the journey before would help us and it did in a lot of ways, but quickly realised that every baby has his/her own journey in the unit – you cannot second guess how they will be on a day to day, hour to hour basis, and that was hard – how the baby is dictates everything, what the team do, but more importantly how we as a family do. If he was having a good day, we were, if not, we were in the pits.
I was lucky with Elsie and got a proper kangaroo cuddle after 2 weeks – with Archie it was a quick 5 minutes whilst they were changing the incubator at 3 weeks, with a proper skin to skin cuddle after 6 weeks. We could cope with that, as he was working so hard to breathe, survive, but when we could see him getting better even though he was on 50% oxygen, as his mum was desperate to show him that when he was touched it wasn't just to do another procedure on him, he had a family who loved him and couldn't wait to get him home.
So, Archie was 9 weeks in Blackford, he was the quiet one in the corner, a 'mushroom' who liked it dark and quiet. He wasn't that quiet himself though, swinging his sats, red bells galore, blood gases and CO2 readings that were quite something, but we learned that was just Archie and he compensated beautifully. Archie's issues have been with his lungs, I didn't get steroids in time for them to have any impact, and so he has dealt with chronic lung disease all the way and coming home. He also got a few infections, again with Elsie she was very lucky not to get any, but Archie had 4 lots of antibiotics and 5 blood transfusions before he was 4 weeks old. We had a potential NEC scare, but thankfully it was just 'CPAP tummy'.
Archie on CPAP
We did have a time that he seemed to stand still in how he was and that was really hard, I was used to seeing changes all the time. But then, something clicked in him, and he made some huge leaps very quickly, kicking cpap and onto oxygen and sats and CO2 settling. Moving to Braids, he seemed to know and knocked a lot off his oxygen requirement overnight! 8 days later and we were in Calton and they were now talking of coming home... it took us a lot of time to get our head round that, he had only been in ICU less than 2 weeks before. But Archie showed us he was ready, and settled on oxygen and started to breastfeed so we concentrated on that.
Archie got home after 14 weeks - 6 days before his due date, weighing 5lb 13 and has gone from strength to strength since. He came home on low flow oxygen and has just kicked that at 8 months old (actual), 19 weeks (corrected).
Our first weekend home as a family
We are so proud of our children. Very quickly they show you just how tough they are and it is amazing to watch them grow – you really appreciate what the body does and regulates in normal pregnancy. I am never destined to have a full term pregnancy and that is hard, but we have 2 beautiful children doing well, and that is down to the amazing team here at Simpsons.
Archie today – 35 weeks old, 20 weeks corrected
Archie, Elsie, me and Gav say a big thank you to all for helping us become a family.
To anyone reading this, good luck on your journey, we got amazing support from reading these stories, and from other parents on the unit. Only they know what you are going through.