The twins turned two this week, and I had considered taking a break from sharing the story so far and writing about their birthday. However, after chatting with Ben we decided we would continue on with the story because there is still SO MUCH to go through to catch up to where we are now. So here we are, ready to share about our time in the NICU but I wanted to start by sharing something that Ben had posted on his Facebook page, the day after the twins were born.

“At 11:02am and 11:04am on the 5th of August these two beautiful angels entered this world which brings a close to what seemed like the longest 32 weeks of our lives. 
Alexander Ben Malakai Jones who weighs 1896 grams and 43cm long is doing great. Alexander is in the intensive care, not on any oxygen and currently feeding on expressed milk.
Hope Elizabeth Louise Jones who weights 1190 grams and 39cm long is also doing great. Hope is with her brother in intensive care, also not on oxygen and also feeding on expressed milk. Both seem to be doing great, to the doctors surprise, with almost no support from machines, only a tube to feed. 
Heidi is also being incredible, recovering well, off all her tubes. The recovering process has began and is standing for small periods of time. 
Ben has taken a breath, in what feels like an eternity and the smile has not disappeared from his face. 
Lincoln has already learnt his brother and sister’s names, telling everyone that he is a “big brother now”. During a disrupted night, the only thing that would calm him down was to look at photos of the twins. I can see the love he has for them already. 
The whole family is in great hands. Thank you to everyone who has been on this journey with us, who has supported us, prayed for us and loved us. You all have made this journey a lot easier.”

We were off to a great start, while we were both exhausted, we were feeling positive. The fact that neither Hope or Alexander were showing any signs of difficulty in any way was a relief, but as we had learnt during this pregnancy, anything could happen. Hope had already shown that she was unpredictable when we made it to 32 weeks gestation, at least 4 weeks longer than any of the doctors, nurses and midwives had expected.  We really had no idea what was in store for us in the coming weeks.

With the babies in the NICU, I was taken to the post natal ward to recover after my caesarian. It would be about 6-7 hours later, that I would get to see my babies again. Laying there in my bed, there were sounds of baby cries all around the ward, but not my own. It didn’t really bother me at the time, I think I was just so exhausted from the past 36 hours and I knew my babies were being cared for, but thinking back now, I wonder whether it would have made more sense to go back to the antenatal ward. I think of other parents who have been in the same situation with their babies in the NICU, and some of them potentially really fighting for their lives. Hearing crying babies around them but not having their own beside them could be quite distressing. For myself, there was a part of me that was upset I didn’t have my babies beside me, but in my situation, the fact that I had both babies doing well was enough. So when I was in my room, sharing with another mother with her baby, I did what I knew how to do best. Stay positive and offered her any support that I could (in my barely able to move state).

The first time I went down to see Hope and Alexander, I was in a wheelchair, still feeling the effects of the epidural and obviously in pain from being cut open. I remember taking one look at Hope and had a mix of feelings. There was excitement, joy and relief but also, fear and anxiousness. When I first saw Hope I was afraid to hold her. She was so tiny, her arms like little twigs,

I remember turning to Ben and saying “I can’t hold her, I’ll break her”. To think that at only 1.2kg, she was still double the size of some of the babies that have seen the NICU and made it home. Despite the fear, I held her in my arms, and I was in love. She was perfect. I didn’t see a baby with Down syndrome. I didn’t see complications. I didn’t see a life of difficulties. I saw my perfect, little treasure, ready to take on the world!

Hope didn’t remain off oxygen for long. Day 2, her need for oxygen became apparent, and she had new tubes attached. Doctors told us we had nothing to worry about, and this happened quite frequently. Once again, they had been surprised she had managed a day without the need for it.

Over the next few weeks, life for our family was very busy between home and the hospital. We needed to make sure we spent enough time with the babies as well as spending time with Lincoln. I also had to get myself into a routine for expressing which needed to be done every 3-4 hours initially. This was already quite familiar as I had exclusively expressed for 12 months with Lincoln. Ben also had to go back to work.

I also struggled with sickness in those first few weeks, getting a cold and making me unable to visit the babies. I remember the week that I wasn’t able to go in. It was hard. I said to Ben, “I feel like a cow right now, I don’t feel like a mother”. While I was unwell, I spent my days at home, expressing milk to send into the hospital with Ben. There were so many very young and sick babies though, I knew that taking my germs in would be risk to their lives. Even my own babies, who generally were doing really well, could have had major complications if they picked up any cold or flu illness. So, I did what I had to do, and when I was well again, I was back at the hospital by their sides… and then it was Ben’s turn to get sick.

I don’t actually remember much of our time in the NICU. Hope was there for at least 4-5 weeks before being moved to the Special Care Nursery, but due to how busy life was, it’s all become a blur. I remember both Hope and Alexander had to have multiple tests each week with Hope having more due to her size. The one thing that I remember most of all, is the nurses. They were amazing! In the initial few weeks, they helped us learn how to care for our tiny babies. After just a few days, their love for them was already showing and it wasn’t long until everyone in the ward knew who our twins were. Even if they weren’t assigned to them, they would still come and visit Hope and Alexander to see how they were doing. In those first few weeks, Hope was already bringing joy to those around her. People were already seeing the value of having Hope in their lives.

There’s so much more to be said about our time in the NICU and SCN including discovering there was an issue with Hope’s heart, but I will save that for next week.