We didn’t know that day just how important that little ward would become to us. It became a second home, a little haven; the nurses became our good friends, the Sisters like mothers, the cleaner knew what way I took my coffee, the doctors felt like school mates, and the cardiac consultants like grandpas.
What followed were 8 weeks of some of the highest highs I’ve ever experienced and also some of the lowest valleys I’ve ever been in. Ben and I found our rhythm of being at the hospital with Elijah and being at home with Jonah, Seth and Leah. I would have breakfast then leave during the week at around 8am for the hospital and return to have dinner. After the 3 littles were in bed, Ben would leave at around 730pm to be with Elijah, returning home late. At the weekends, sometimes we’d swap, sometimes we got babysitters, sometimes we got to bring the gang in to see their brother. It was tough. Dividing yourself. Our 3 weren’t used to mummy being out of the house. Ben and I weren’t used to passing each other like ships in the night. But we did it. And we’d do it again in a heartbeat. J, S and L were amazing – they never complained once. Family and friends were so kind. We realised how blessed we were, both before this all happened and indeed during.
Those 8 weeks taught me how much joy can be found in the simplest of things. I learnt what actually matters and just how much we take for granted. I learnt what it is to have patience, to live for each day, and to take things one day at a time. I learnt what it is to walk by faith.
When Elijah was 11 days old. I got to feed him. Up until then I had been expressing and he had been getting it down a wee tube. But on 1st July the doctor asked if I’d like to feed him myself. (The tears are tripping me now remembering this!) We had only just started the day before getting him in and out of the incubator when we wanted, and now I could feed him!! I will NEVER forget that first feed. Elijah….let’s just say….Elijah was a boob man! He loved it. And he did so well. I was over the moon. What joy. I treasured those feeding times so, so much. It was amazing. Unfortunately, we did have to stop after a few weeks. My cholesterol was 10, and because there was a query over Elijah’s metabolism, it was thought we’d air on the side of caution and just give him formula. I was gutted, really gutted. But, do you know, that doctor was so good about it. He allowed me to have one more feed, he drew the curtains around us, and I cried as Elijah fed. I knew it was for the best, but it was hard to let go.
He wasn’t so keen on the bottles it has to be said – like I said – a boob man 😉 And prayers were answered – the results came back to say that there was no issue with his metabolism, but we stuck with the formula. It made more sense.
The 2nd July was a BIG day. I went in that morning and got told, Elijah was moving to a wee crib, I could dress him AND……he could meet his brothers and sister! Things that I had taken for granted with the other 3…they were dressed within an hour of being born – Elijah was 12 days old!
Me and my legs have an issue I’ve learnt. That morning, my legs went wobbly – again! My heart was racing. I was giddy. Giddy at the thought of dressing him. Giddy at him being out in the open in a crib. And the thought of him actually meeting Jonah, Seth and Leah??!!! SHUT.UP. And what an amazing day we had. 4 days previous we had been told we’d be lucky to make it up the motorway! God had a plan. He was so good.
Now. For the next full month that wee man was in and out of that incubator like a yoyo! Honestly, a few days later he had SVT (his heart rate was 300) so he had to go back in for observation. Then, a week later he was in the crib. And that’s how it went until 3rd August when we finally said cheerio to the incubator! But it became a little joke for us and the nurses, (in the nicest possible way,) you have to keep your joy. You have to keep smiling. You have to stay upbeat. Yes, for sure, it was frustrating and devastating, but you cannot let it beat you. For Elijah’s sake and ours, you dig deep, you find your brave, you choose to be upbeat.
That month brought so many firsts which I never thought would bring so much delight. Things that I had previously just taken for granted – his first babygro,
his first wee Teddy that he was allowed to cuddle, (NICU were quite strict about infection control!) his first bath when he was almost 4 weeks old,
his first wee look at a book, his first play with toys, when we got to decorate his bed….all things which can seem so normal, almost insignificant but meant so, so much. And bless those nurses, they got excited with us. They indulged us. As I ‘pimped Elijah’s crib’ the consultant thought I was a fruit loop!
This tiny wee 4 week old baby, who was genuinely struggling at times to breathe and his mother has lights and sounds and singing and is showing him black and white pictures!! I knew at times, the medical world smirked at my antics. But I didn’t care. If Elijah was going to be “life limited” as they so frequently were keen to tell us, we were both adamant that it was going to be a pretty darn good time he had!
That month brought hard things to hear. With phrases like “heart transplant”, ” life limiting illness”, he might have a “mitochondrial disease”, there might be a “genetic issue” all being thrown out there, but with no actual diagnosis – just a lot of maybes – it was so very difficult. There were times of utter devastation. I remember one afternoon our consultant sitting with me explaining a little more of Elijah’s heart condition and I felt so terribly unwell all of a sudden. He examined me and told me, after a while of hearing my symptoms, and listening in on my chest and doing blood pressure and all the checks, that I was “suffering from what was commonly called a broken heart.” I never knew that it could be an actual real thing, not just an adjective.
But that month also brought such great hope. Elijah, the wee darling, was fighting. Every. Single. Day, he was fighting. And God was on His side. He proved them wrong every time. He started to…well, he started to almost thrive.
I had to cling to hope. I listened to what the doctors thought my precious boy might have. But I fought it. I listened, but I shelved it. We believed God was able. We believed He had a plan. I wasn’t a big fan of this plan, but I still had that peace and it definitely passed all understanding.
And with that resolve to always hope for the best, to have high expectations, and with a bit of stubbornness on my part to ‘prove you wrong mate’ the six of us decided to ‘do this’. And do it we did.
As July ended, another chapter began.