On 14 July, the Stratford upon Avon Home & Garden Show hosts the 2016 Bliss Garden tea party and thank you awards, where Bliss celebrates some of our outstanding supporters.
The show’s organisers, Blooming Marvellous Events Ltd, are a family business and have a very special reason for being our hosts – their social media officer Joe Brookes is father to Stan, who was born prematurely, and Ezra, who was born full term but developed a serious health problem.
Joe’s wife Emily tells their story:
In 2012 I was pregnant with my first baby. I was excited, nervous and totally clueless.
I’d had ‘false alarms’ over early contractions, but this second time was completely different. I was three centimetres dilated and the baby was on its way. We were in utter shock.
Then we were being transferred because our baby would be too small to be born at our local hospital. They were phoning around to find a cot for us.
Very scary words – too small, and cot. After a dose of steroids I was transferred, and went straight to the delivery room. More steroids, and I was put on a drip to try and delay labour and mature the baby’s lungs. My baby was being born at 31+1 weeks.
Near the end of labour, doctors explained to me about the neonatal intensive care unit (NICU). I was more worried about the frightening-looking cot with a heat lamp, resuscitation equipment and tiny little mask that I could see on standby.
Finally, Stanley was born weighing just 3lb 8oz but breathing well on his own. When I heard him cry I relaxed. Joe was amazed he looked like a baby - he was expecting something much more foetal!
After a quick kiss, Stan was rushed away. All I wanted to do was sleep. I will never forget waking up on the postnatal ward, alone, with just a photo of my baby. I felt very detached from the whole experience.
The next day, Joe persuaded me to go to NICU. After I got over the shock of the incubator, all the wires and tubes, I saw our little boy. He was perfect.
We couldn't stay at the hospital, and I didn't drive, so we could only visit in the evenings – Joe had delayed paternity leave for when Stan could come home. I didn't hold Stan until he was two days old, and I hated expressing breastmilk. I always felt I wasn't making enough, despite getting up every three hours to pump.
It felt strange to be feeding my baby through a tube in his nose, and at first he wasn't allowed to wear clothes. But then he was big enough to be transferred back to our local hospital’s special care baby unit (SCBU). I couldn't go in the ambulance with him, but I met him there.
Finally I could see him for most of the day, and they let me dress him. I started to breastfeed him – a special moment after weeks of tube feeding! The heat lamp was slowly removed, then the tube in his nose. After four weeks, he could come home! The hospital let us stay overnight with him for two nights to settle in, then we packed him in his car seat and walked out. It was a bit frightening, we couldn't quite believe they were letting us do this! But after a few nights desperately worrying about his temperature, or staring at him to see if he was okay, we relaxed.
Stan is four now. You would never know he was premature, he thrives at nursery school and is even ahead in some areas.
In 2014 we decided to try for another baby. I was very nervous - my first, premature labour had been spontaneous so no one knew why Stan had been born so early.
This time my pregnancy was consultant-led and monitored very closely. At 28 weeks, I had two doses of steroids in case this baby came early too, but when 32 weeks came, I relaxed.
I went into labour only nine days early. We were so relieved. Ezra was a whopping 8lb 13oz. He latched on straight after birth, but after that first feed, he became less and less hungry, and more unsettled. With guidance, I persisted with breastfeeding and we were discharged.
But that night, Ezra didn’t wake to feed. He was very lethargic. I rang the hospital and was told to take him to A&E, as a precaution. We phoned my mum to babysit Stan at four in the morning and lifted Ezra into his car seat - he was now very floppy.
I tried to feed him again but he just slept. They checked his blood glucose levels. I knew it was serious when they rushed to get a canular into him to administer glucose. We were taken to the SCBU, and they began to monitor his blood sugars closely.
Then we were told that if Ezra’s blood sugar level dipped below 2.6, he would have to be transferred. Ezra hadn’t come early so we never thought anything like this would happen again!
The neonatal ambulance arrived and we went ahead. When Ezra arrived he was placed in the NICU. Doctors explained they would give him intravenous (IV) dextrose to try and stabilise him, then slowly wean him off, but every time they tried his blood sugars crashed.
Our consultant explained that babies can have blood sugar problems as they adjust to life outside the womb, and the problem can be transient. They took blood samples. A week later, it was confirmed that Ezra had a condition called hyperinsulinism. His condition might be transient, or not. Great Ormond Street Hospital was the specialist centre and having spoken to them the doctors would try various drugs and limit his food intake.
Everything sounded so scary, and we burst into tears.
They tried to stabilise him but after two weeks we had to be transferred again. We hoped this would help Ezra get better, but were faced with a hospital stay two hours away, plus Stan to look after. Joe’s paternity leave had ended, so we relied on my mum. We travelled to Great Ormond Street, staying firstly with family in London, and phoning the hospital nightly to see how Ezra was.
Then I lived on the ward with Ezra. Joe went home with Stan. Our family was divided.
Ezra had lots more tests. His condition wasn’t transient, but congenital. Joe and I both carried the same faulty gene, but at least with this information, they knew much better how to treat him.
We were in Great Ormond Street for 10 weeks, with lots of different drug therapies. After narrowly avoiding a near-total pancrectomy, Ezra was allowed home. Finally, we could all be a family together!
Living with congenital hyperinsulinism is tough. We battle daily to ensure Ezra’s blood sugars are good. He’s fed through a gastrostomy, and is on three different drugs.
Having had both a premature and a sick baby, the hardest part for me was being separated from them. I hated feeling out of control of things like feeding – my babies’ care was in the hands of others.
But Bliss were fantastic. In my many hours on hospital wards I read every single Bliss pamphlet and book. It was also amazing to discover the Bliss Facebook page, and talk to others who could relate to the situations I was in. Thank you to all Bliss’ supporters, wherever you are, for all that you do.
If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email mailto:firstname.lastname@example.org