Your children being born two months premature isn’t something you can ever be prepared for, but having them on Christmas Day takes it to a completely new level. Thanks to Acorn House, we never had to worry about how we were going to stay close to our sons.
I had pre-eclampsia when I was pregnant with my twin boys, Lucas and Leo, so I needed more regular appointments with the doctors. During a regular check-up at 32 weeks pregnant, which happened to be on Christmas Eve, it was discovered that one of the twin’s placentas had become packed and had prevented them from growing for the last four weeks. The other seemed to be fine but the nurse told me I would need to be admitted to Lister Hospital as it was very likely my babies would need to be born soon for their safety.
That was really shocking to hear. I thought I was only going in for a check-up but now my twin boys were going to be born two months premature and on Christmas Day of all days. My partner Dale joined me at the hospital and I was scheduled for an emergency caesarean. We didn’t really have time to panic or even process what was happening. We just needed to do whatever would keep them alive. I didn’t think much more of it until I was on the operating table. That was when it really set in.
Lucas arrived first, weighing 3lb 3oz. However, I didn’t even realise he had been born because he wasn’t breathing so he didn’t cry or make any noise. The doctors gave him five rescue breaths and after a few worrying minutes they were able to resuscitate him and get him stable. Leo arrived a minute after Lucas was born, weighing 3lb 12oz. Dale saw them both very briefly and I could see the doctors working on both boys before they were whisked off to the Neonatal Intensive Care Unit (NICU). We didn’t even get to touch them. It wasn’t until two hours later that we were able to go and see them, which was surreal. They looked so small in their incubators, surrounded by wires.
“We had always looked forward to their first Christmas, but everything had been thrown up in the air.”
This was of course not how we expected to spend our Christmas Day and especially not the boy’s first Christmases. With Lucas and Leo being so poorly and so much else to focus on, we didn’t really do anything to celebrate the occasion. Sadly I was also very ill. While Dale very sweetly offered to bring me a Christmas dinner, I just couldn’t face it. It was quite upsetting, actually. We had always looked forward to their first Christmas, but everything had been thrown up in the air. They were both so ill that we really didn’t feel like celebrating.
It wasn’t until a couple of days later they were well enough for us to have our first hold with them. Two weeks after they were born Lucas started to struggle with his breathing, needing assistance from a high flow oxygen machine. He stayed on the machine for the next four weeks until he was strong enough to breathe on his own. With Leo being that little bit bigger he was able to leave the hospital two weeks before Lucas could. Some six weeks after they were born, we were finally able to bring our twins home to enjoy life together as a family.
Unfortunately, that didn’t last very long. A few weeks later Lucas started struggling with his breathing again, having also developed a wheeze. The mother’s instincts kicked in and I was really worried about him, so we went back to Lister Hospital. Just 24 hours later, he stopped breathing. If I hadn’t listened to my instincts he might not be here now. He was taken to the Paediatric Intensive Care Unit (PICU) and placed on a ventilator, which saved his life. We barely had time to process what had happened before we were told that Lucas was being transferred to Addenbrooke’s Hospital in Cambridge for specialist care.
When we arrived in Cambridge Lucas was taken to the PICU where the nurses told us that we had a place to stay at Acorn House, close to the hospital. I had no idea what they were talking about, but they explained it’s a ‘Home from Home’ run by The Sick Children’s Trust. The charity provides families with a place to stay free of charge while their child is seriously ill in hospital. We made the two-minute walk over to Acorn House and it was everything we needed in that moment. We live an hour away from Addenbrooke’s Hospital and the situation was already very stressful for us. To drive back and forth every day would have been too much and would have meant I could only spend a small amount of time with Lucas.
“It was incredibly reassuring to know The Sick Children’s Trust and Acorn House was there to support us.”
Having Acorn House was such a big benefit as the hospital could call directly to our room, meaning we could rush back to the ward at a moment’s notice. That allowed us to relax a bit so we could rest and look after ourselves while never having to worry about getting back to Lucas should he need us.
Lucas remained on the ventilator for the next eight weeks, being given antibiotics to fight off the viral infections which the doctors thought were causing his breathing problems. He also had several scans to diagnose what was causing him so much trouble, but these were inconclusive. To this day the doctors aren’t entirely sure what caused his breathing problems, but they think it is a combination of his underdeveloped lungs and the infections he contracted. Once he was able to wean his dependence on the breathing support, we were able to go back home with a breathing machine to assist him.
About three weeks later, the issues returned. We went back to Lister Hospital for a third time, where Lucas was monitored. However, with a very high heart rate and worsening breathing, we made the decision to put him back on the ventilator before he completely crashed again. Lucas and I then made the trip back to Addenbrooke’s Hospital. When Dale met us there, I said ‘welcome home’ as a joke because we had already spent so much time in Cambridge and at Acorn House. It was incredibly reassuring to know the ‘Home from Home’ was there to support us again. Lucas was given similar medication to his previous stay and after a further two and half weeks in hospital, his breathing improved enough that he could come off the ventilator and return home with us.
Currently Lucas is still using an oxygen machine and has recently needed to be fed by a nasojejunal (NJ) tube, which bypasses his stomach and goes straight into his intestines. This is because he has bad reflux and is aspirating his milk. The doctors think this might also be contributing to his breathing problems. We’re hoping that once this improves and his lungs get bigger, he will stop needing the breathing machines all together. For now, both boys are doing well and I’m finally starting to feel like a new parent, experiencing the sleepless nights and high energy of having twin boys!
We’re certainly looking forward to a much happier Christmas this year, with Lucas and Leo’s first birthdays thrown in as well. We can’t thank The Sick Children’s Trust enough for their support. To give a little back so the charity can be there for more families, Dale and his friend Darryl are taking on a 50k walk down the Thames path to raise money for the charity on the 10 September which you can find out more information about on their Just Giving page.
Sam Smith, Lucas and Leo’s mum.
