On 9th August 2016, 5 months and 4 days after being born, Alec came home to live with his mummy, daddy and big brother. 5 weeks after his due date, having endured more than most of us go through in a lifetime. Having been given a 1 in 10 chance of survival and being dangerously close to losing the battle  at points, our little boy had defied all the odds and was actually coming home.

New home, new baby

We moved into our new house and Alec came home on the same day. I have mixed feelings on this – everyone says the most stressful things in life are moving house and having a baby. If 2016 for our family is anything to go by, I’d agree! In many ways it was totally bonkers to do them both on the same day, but I wouldn’t change it. We’d waited a long time for both of them and it felt like a conclusion of everything that had happened.

A baby is hard work

One of the things I found difficult about getting Alec home was that, although he was 5 months old, he was still like a newborn baby. And having a newborn baby is hard work! He cried a lot, struggled with being put down, sometimes fed constantly, didn’t sleep well at night. Whenever I was finding things difficult, I used to feel guilty, thinking, “I should be just pleased he’s home.” Alec soon settled into life in our family, became used to us all and our environment. The first few weeks of having him home were similar to the first few weeks of having a newborn baby at home, except I wasn’t in pain from birth etc, so I was physically able to get around, out and about and drive etc.

Presenting like a normal baby

Alec was expected to come home on oxygen (most of his “peers” have home oxygen) and with a feeding tube. The fact that he didn’t was just brilliant and we are so thrilled. It really is lovely that he seems like a normal baby. The Alec that we have at home almost seems detached from the Alec who was in hospital. But, we do have to keep in mind that he was very very poorly and could get poorly easier than other babies…

Avoiding illness

It was drummed into us in the hospital that Alec is likely to be very poorly over the winter. One doctor said, “He could sail through, but it’s unlikely.” Because of Alec’s chronic lung disease, coughs and colds could make him very poorly, particularly his breathing. I’ve often had to cancel plans with friends if they or their children are unwell and I hugely appreciate everyone’s understanding about this. We just have to be so careful – we know we can’t totally avoid illness but if we know about it, we do. We wash our hands a lot!

“Hospital is now your second home, not your first…”

I was chatting (over whatsapp) this evening with a good friend who I met in the NICU when our babies were poorly. We were thinking about what it’s like now being home and I mentioned all the hospital visits and she described it like the heading above. It’s so accurate! Alec has had a LOT of appointments. Almost every day there’s a letter through the door about an appointment, or a text reminder so we don’t forget to attend. Extra jabs, weigh in clinic, eyes, ears, dietician, general development, community nurses, health visitors, physiotherapy. They’re gradually decreasing, but he will have involvement from outside agencies for as long as he needs it, as problems become apparent or problems he does have resolve.

Getting back to normal

I found it quite difficult getting back to normal! I had Evan every day again, which was just so lovely. I could suddenly go to toddler groups etc again – as Alec was so well I felt confident taking him, although I’m feeling less like that now that winter is here. Part of me just wanted to stay at home with them both, but also needed to get out of the house too! I suppose the thing that I’ve found hard is just having to drop straight back into normality quite suddenly. I’d been out of normal life for so long, it was quite an adjustment getting back into it.

Surges of emotion

Since being home, there have been a few occasions where I’ve felt really overwhelmed with emotion – there’s an entire other blog post welling up titled “Unexpected tears”. I’ve had to explain to Evan quite a few times that “Sometimes we cry when we’re happy.” Other times it’s been when I’ve remembered something that happened that I maybe didn’t cry about at the time. Usually the tears come when I’m doing something totally normal, and Alec is just there, part of it.

Today is World Prematurity Day, a day where parents and medical professionals seek to raise awareness of the realities and difficulties of having a premature baby. Before Alec was born, I thought that premature babies just needed to lie there, grow and keep warm and come home around and about their due date. The truth is that premature babies are desperately sick babies, who must fight and fight, demonstrating a strength and resilience that you can’t believe can come from someone so small. Often people say to me “He was in a hurry, he wanted to be here…” Yes that’s true. Once he’d arrived, Alec showed us every day that he REALLY wanted to be here, and that ultimately, he wanted to come home and live with us.