July 2021
At the end of the heatwave in July 2021, a tiny, perfect human was born. She came out pink and crying; the surgeon commented on how girly and pretty she looked. Although we already knew she had some hidden health concerns inside her little body, she was the most beautiful thing we’d ever laid eyes on.
She was whisked away after a brief meeting and given some support to give her the best chance at life. I was transferred back to the ward to recover after my c-section; it was over 8 hours before I got to see my baby girl again but in the meantime Ross went to see her and got some much needed cuddles.
I don’t know what happened, but one minute I was cosy in my mama’s womb, and the next my lungs filled with air and someone vigorously rubbed me with a scratchy towel. Apparently my lungs weren’t doing a good enough job, so they put a tight mask over my nose and mouth to help me breathe. Everything was blurry and bright but I could hear my dad and knew he was near. I wrapped my tiny hand around his finger and then someone carried me over to my mama. She was crying, happy tears I think, and I got to spend two blissful minutes with my face next to hers, breathing in her sweet scent and looking at her beautiful face with my blurry vision. I tried to gaze at her so intently that she would know how I much I loved her already.
When I woke up I was in a warm plastic box laying on my belly. I had a nappy on to catch my wees and poos, but nothing else apart from some stickers and wires. Someone had put a tube in my nose and I was being fed my mama’s colostrum that she spent weeks collecting in anticipation for my arrival. I knew all of this didn’t feel right, and I knew I missed my mama but I felt safe and cosy.
Hands would come in through the holes in my plastic box; change my nappy, change my stickers, turn me over onto my back or front. These hands weren’t familiar, but they were kind and gentle. Sometimes blue gloved hands would come through and poke me to get blood samples; I didn’t like those ones. I knew the next hands that came through though; they were my dad’s. They were the softest and warmest hands I’d ever felt.
Someone picked me up out of my box and snuggled me into my dad’s arms. I could hear his heart beating and I felt so peaceful. I tried to peep up at him but everything was still blurry; that didn’t matter though I could smell him and he smelled like home. His voice was low, and he spoke the kindest words to me while I dozed off to sleep again. I woke up again, and I was lying on my back. My tummy felt warm and full, someone had given me some more of mama’s colostrum. I was born a very long time ago, and I still hadn’t seen her. Oh, how I wished I could feel her arms around my tiny body.
August 2021
After ten days in NICU for monitoring and support, we took Evie home to our temporary home at my mum’s. We had received some tough news in the NICU as they diagnosed Evie with transient leukemia and the cardiologist wasn’t sure if her heart could be repaired. It was nice to escape back to our own comforts and try to forget about Evie’s health concerns for a couple of weeks.
The first few days at home were blissful, just like you hear about the ‘newborn bubble’. All we had to do was look after Evie and look after eachother. We were busy, me pumping every 4 hours, Ross making sure we were both fed, both of us making sure Evie was fed and changed; but life was slow and gentle. She was bottle feeding and occasionally breastfeeding with no NG tube. Sleep happened in between everything else, the three of us cuddled together in dreamy slumbers.
Evie’s first local pediatrician appointment was only seven days after we got home, she had her bloods checked to monitor the transient leukemia. Two weeks later, we had to travel back down to Dublin which was a three hour journey to Evie’s cardiology appointment. We felt crushed as this was the time her cardiologist confirmed that there was no surgical options for Evie’s heart and that they would refer her to palliative care. It was so hard to believe because she appeared so well; we couldn’t imagine how sick she really was underneath all of her perfect soft skin. We made sure all the important people in our lives met Evie in the first few weeks as we were so uncertain of how long we’d get with her.
I loved our family nest, we would spend all day and night cuddling in bed and sometimes I would drink some of mama’s milk. I knew how to nurse but I just kept getting too sleepy. I knew my heart was working very hard, but I tried my best to drink enough. This was new to all three of us but we worked it out together, as a team. They said I was such a good little baby; I didn’t cry much, and I slept lots.
My favourite place to sleep was on my mama’s chest with her warm breath on my head. I enjoyed sleeping next to dad but we would both get very hot. We had visitors sometimes, apparently a lot of people had been waiting for months to meet me and they were so happy that I’d made it. I met my Nunu and my GG, and the person (my fairy squidmother – that’s a story for another day) who would take care of me if anything ever happened to mama and dad. Usually people would cry when they met me; I’m not sure why as they didn’t seem sad to me. Maybe they were happy tears like mama when I saw her for the first time.
Sometimes we’d go out in the car, I had lots of appointments because apparently my heart and blood weren’t very well. At some appointments, the hands with blue gloves would come back and poke me but I wasn’t afraid, my mama was with me always. Other times, there was no poking, but stickers, wires and cold gel on my chest instead. Dad was with us for those appointments, they were to check my heart was still doing okay.
We had appointments at home too, a nurse to check how big I was getting. It was hard to put on weight when I was using so much energy trying to drink milk. I know it was worrying mama but my heart was under a lot of pressure and I fell asleep a lot. I wished we could have just stayed in our cosy nest where I would look into mama and dad’s eyes so deeply to make sure they knew how much I loved them. I wanted us all to stay there cuddled together forever.
September 2021
Evie was struggling to gain weight because of her heart defect. She went into heart failure at 6 weeks old due to pulmonary hypertension (high blood pressure in the lungs which causes damage to both the lungs and the right side of the heart; the side that was already underdeveloped). I was in contact with the cardiac dieticians in Crumlin hospital and I queried with them whether we should have an NG (nasogastric) feeding tube placed to help Evie with finishing her bottles. We decided to have Evie admitted for a few days so that we could learn how to place her NG and feed her through it. They also started her on some diuretic medication to help her offload extra fluid and so to take pressure off her heart.
We stayed for 4 nights in hospital and came home with our skinny little baby and a new plan for weight gain. Having worked as a nurse for many years, I felt competent and confident with this new plan. After a taste of hospital life, we quickly settled back into our daily routine at home. We still had more appointments than a two month old baby would regularly have, but that was something we got used to.
Evie was on such a strict feeding regime via her NG tube, she quickly gave up on drinking from the bottle. Ross and I tried each time to encourage her to drink a small bit, but to no avail. I was concerned that she would lose strength in her oral muscles for eating and speaking later on so I did oral exercises with her. She learned how to poke her tongue out at us from an early age which was very cute and kept her muscles working.
We noticed her weight going up significantly which was so encouraging. We knew we’d made the right decision by opting for the NG tube. Ross ordered some cute NG stickers which brightened up the situation for us a lot. We tried to keep Evie as safe as we could and were conscious of who we met and whether they’d been sick. We’d ask people to wash their hands when they came to visit. Unfortunately, I caught a cold, which passed onto Ross and eventually Evie.
On one trip to the hospital for an appointment, they made us stay for a while because I had a bug in my nose that was making me sick. They stuck a swab in my nostril and said I had a cold; I think that’s what was making me snotty and sleepy. Apparently because I have Down syndrome and a heart condition, my immune system isn’t very strong and my tiny airways don’t make it easy for me to get rid of viruses.
I didn’t want my dodie anymore because it was tricky to breathe with it in. I was glad I had my feeding tube because my milk could just go straight into my tummy without me having to drink it. Thankfully, we could go home again after a few hours in the hospital; they just wanted to make sure I didn’t need any extra support. I was so happy to be going back to our nest.
October 2021
I didn’t know what Down syndrome meant, but I knew it was something important. Mama’s friend said she felt very lucky that her sons get to grow up with someone like me; that must mean I’m very special. In October, Mama shared photos of me and pieces of information to tell everyone about how having Down syndrome isn’t a bad thing. She said she made loads of friends online who also have children with Down syndrome, like me. I hope we can meet them one day.
I couldn’t understand why some people would be afraid of someone like me; I’m just a little baby and I’ve been told I’m very cute. I knew I had more medical needs than a lot of other babies but I’m still worthy of love and for someone to fight for me. My mama and dad are the best at doing that for me.
When I was pregnant with Evie and we had received her diagnosis, I turned to Google for information without realising that was probably the worst thing I could have done. It was all doom and gloom, with outdated statistics and horrendous diagrams. Looking to Instagram, I found families all over the world sharing about their lives with their children who have Down syndrome.
Every year, October is Down syndrome awareness month; so, each day of the month I shared a photo of Evie on my Instagram with a characteristic, trait or fact about Down syndrome. I learned so much and it was interesting to see the feedback from other people online. I had already connected with other parents who had children with Down syndrome but I ‘met’ a lot more people during October.
On the final day, I changed my Instagram handle to @shouting_eviesworth. ‘Shouting their worth’ is a common phrase used in the Down syndrome community. One of my main reasons for sharing about Evie and her Down syndrome diagnosis was to educate people, and show that she is worthy of people’s understanding and respect. Interestingly, Ross’ family name is Worth and therefore so is Evie’s. Being Evie’s biggest advocate and shouting her worth is a job I take very seriously.
November 2021
We started to visit a big empty house that smelled bad. It was cold there but for some reason mama and dad were very excited to go there. Sometimes my fairy squidmother would be there too. The house started to fill up with our things and back home, our family nest was getting empty. Mama kept telling me that this was our new home and she was happy that we finally had somewhere to live; but I didn’t understand – mama and dad were my home, it didn’t matter where we were.
Mama and Nunu were very busy painting and dad was at work so I spent a lot of time snoozing in my swing. The fumes from the paint were dangerous for me so I stayed in one room while they painted and mama came to check on me all the time. She would come and give me milk through my tube and sing to me. She would always try to give me some milk in a bottle first but I had forgotten how to drink it so I just gazed up at her instead.
Our bedroom wasn’t ready yet, so all three of us slept in one of the downstairs rooms on a mattress on the floor. Apparently everyone does it when they first move into their new house. The first room to be completed was dad’s office, and the second was my room. It wasn’t for me to sleep in, but just to keep all of my clothes and things in. Mama also used to pump in there and dad would bring her cups of tea while she was pumping. Mama and dad’s bedroom was finally finished, and that’s where we all slept together; me in the bedside crib and sometimes next to mama. That was my favourite place to be.
The only home Evie had known was our temporary arrangement at my mum’s house. We had put the offer in for our house in March expecting that we’d have the keys by the time Evie arrived. It was an extremely frustrating process which took around 5 months longer than we’d hoped. We eventually got the keys to our home at the beginning of November. Structurally, nothing needed to be done with the house. The only work we had to put in at the beginning was ridding the smell of over 10 years of cigarette smoke (sugar soap is amazing stuff FYI), and a lick of paint in the bedrooms.
A beautiful coincidence happened, two of my childhood friends and I all ended up being pregnant at the same time. Evie was born first, then Finn two weeks after and Pixie two months later. Evie and Finn had met a few times, but we finally got the three babies together for a visit to our new home. It was so wonderful to see our three babies together having grown up together and drifting to and from eachother for various reason over the years. Despite Evie being the oldest, it really showed me how her heart affected her. She slept noticeably more than the other two babies in the few hours my girlfriends were visiting.
December 2021
We finally had a home for Evie, and it was ours to keep. December came around pretty quick, and we were excited about spending our first Christmas together as a family. My mum and gran were going to spend a few days with us and Ross’ parents were due to come up after Christmas. We got into the festive spirit, and because our sitting room has a double height ceiling, we chose the tallest Christmas tree we could find. We watched Christmas movies and listened to Michael Bublé – one of my favourite videos from that time was Ross dancing with Evie in the sitting room.
Evie’s final cardiology check up of 2021 happened to be three days before Christmas. It was looming for the entire month so I tried to distract myself by posting photos of Evie each day on Instagram in an advent calender countdown style. One particular quote I remember posting was when I told Ross I couldn’t imagine a time before Evie, he replied “we’re wired differently, happier now”. He was so right, it was as if our neural pathways had altered and Evie was engrained in each of us now. I also remember and treasure mine and Evie’s final breastfeed. Our breastfeeding journey was not “typical”, but it was special.
Mama changed my NG tube the night before we went to Dublin. She said she wanted to see if I would latch without my tube in. Even though I wasn’t feeling very well I tried, and it worked. I think we both knew it would be our last breastfeed, mama was so happy she cried those happy tears again. She reluctantly put my tube in and we had one last sleep together at home without realising how much we’d miss it.
The next day we travelled to Dublin to stay with nana and granddad to stay the night. I didn’t sleep very well because I had a stuffy nose and we weren’t in our own home. When we go to the hospital the next morning, I wasn’t feeling very well, so I fell asleep while we waited for my appointment. I woke up when mama took my clothes off so the nurse could weigh me. I still felt exhausted and everyone was acting strange. I could tell mama was worried, but she was doing her best to stay strong and keep fighting for me.
Evie’s oxygen saturations were very low, and she was really drowsy at her appointment. Her cardiologist made the call to have her admitted for some supplemental oxygen and monitoring. She tested positive for rhinovirus (the common cold, which she also had in September). Unfortunately, Evie deteriorated rapidly which resulted in an ICU admission. The following three and a half weeks were the darkest of our lives.
On one painful day, Evie had deteriorated so much that we thought that night was going to be our last with her. We were back on the ward at this point. Evie’s vital signs were unstable, and she had been weak all day. The nurses brought a bed in and we pushed it up against Evie’s hospital cot. We hugged her, held her tiny hands and whispered how much we loved her. We talked about the life we had envisioned with our daughter who has Down syndrome, how excited we were to watch this magic little bird flourish. And how devastated we were to be the ones losing her.
I didn’t know if I was going to get better, but I knew mama and dad were going to be okay no matter what happened. I didn’t want to leave them, but my body was so tired. They’ve always said I have fought so hard from the very beginning, but so have they. I wouldn’t be here if they didn’t fight and advocate for me every day. I felt safe with the decisions they were making for me. I know I had no choice because I’m a baby but I knew everything they did; they did it with my happiness and comfort at the forefront.
After that night with mama and dad beside me, I knew I wanted to keep fighting. My Nuna, fairy squidmother, nana and granddad came to visit me the next day. I still needed my mask to support my breathing, and I had to sleep a lot but I could feel the love in our room and I was so grateful to have my family with me. Mama was doing her best to organise for us to go home together, and three days later that‘s what happened.
January 2022
After almost 4 weeks in ICU on breathing support and a few days on the ward, we got to take our little bird home. It wasn’t under the happiest conditions as we were still so uncertain of how much longer Evie would live for. We had such a busy schedule compared to before and needed some extra help from night nurses so that we could rest. It was such a hard thing accept, that we had taken our baby home to die.
Finally, we were home, and I was so happy. Things started to feel familiar again, after so long in a strange clinical setting. I had some extra support now to help me breathe, especially at night. We also had some nurses come and take care of me overnight so mama and dad could sleep. They were both so tired from worrying about me.
I did feel stronger than when I was in hospital, but things were different now. Mama was worried and tired all the time. Dad had to work, but he was also worried, about me and mama. I tried to show them I was stronger now; I showed them how I could roll side to side and I could still shout and smile. Sometimes I would remember the bad times in hospital and that made me want to be left alone, even when mama held me, all I could think about were the unfamiliar hands in ICU. It took some time for me to be comfortable with cuddles again.
February 2022
Slowly, Evie realised we were back home, and no one was going to do anything unpleasant to her. She was a lot more sensitive, compared to before her admission. Changing her oxygen tubing an NG tube was a much more stressful experience. Her oxygen levels would dip really fast so everything had to be done quickly and efficiently which added to the stress. We all worked together and learned along the way.
A woman from the Laura Lynn hospice came to our house for an afternoon of ‘memory making’. We made hand and foot moulds, and prints with paint. On my birthday at the start of the month, we had a photographer come to the house and capture snippets of our daily routine with Evie. These photos also captured a time when we were ‘a family of four’.
During Evie’s hospital admission, we found out we were pregnant again. During an extremely emotionally taxing time, it was news that lifted us up out of the darkness. We chose the nickname Bear; when we took the pregnancy test, our baby was the size of a waterbear or tardigrade. Our first scan happened to fall on Ross’ birthday. We organised a nurse to look after Evie at home while the two of us went into Sligo. We had breakfast together and then went to our scan. The sonographer could see pretty instantly that there was no baby, just an empty gestation sac – a missed miscarriage.
I knew Bear had come to mama and dad when they needed him most. None of us knew if I was going to make it and he was the glimmer of hope in the dark. I believe he left us when he realised I was going to be okay and go home with mama and dad. Mama and dad decided they would wait for Bear to leave on his own, instead of taking medication or having surgery. Mama was tired and sick because her body thought it was still pregnant. I did my best to cheer her up every day.
March 2022
On International Women’s day, March 8th, my body decided it was time. I started bleeding very heavily in the morning and with no letup, Ross called an ambulance for me. We spent those 40 minutes while waiting for the ambulance, lying on our bed together with Evie in my arms and a towel underneath me. I had emergency surgery not long after arriving to hospital. Thankfully, I could go home that evening back to Ross and Evie.
The day after mama had to go to hospital, we drove to buy a cherry blossom tree to plant Bear with. There was a beautiful sunset and everything felt peaceful and calm. Mama said every year when Bear’s tree blossoms, we will remember this time and it will bring us comfort.
Evie was definitely getting stronger, but we were still being so careful with her. We had been trying to avoid seeing people to keep Evie safe from viruses. However, it was a big deal to us she met the important people in her life and that we got to do regular family things. We started to go out for lunch, and meet friends for coffee. My uncle (dad’s brother) and his family came over from England in February although they kept their distance from Evie as my cousin who’s five had a runny nose. In March, my dad’s mum came over to see us. It was really special to me as I hadn’t seen her in over three years because of COVID-19.
My great gran (we call her great Sheen-ma-ma to tease her), came to visit me from England. I met my mama’s uncle, aunt and cousin a few weeks before but my great gran couldn’t come with them that time. She stayed at our house and I loved when she’d talk to me every morning. On Mother’s Day we all went out for lunch. Nana and grandad came up from Dublin, Nunu and GG were there and so was my great Sheen-ma-ma. Mama said it was really special having that many of my grandparents and great grandparents together like that.
April 2022
Since before Evie was born, we were aware of the severity of her heart defect and we also knew that the cardiac team in Dubin felt that surgery would have a negative outcome for Evie. I had heard of miracles being worked in Boston, MA, so I began the process of obtaining a second opinion from them in November. Evie’s hospital admission had put a pause on that but because she was doing so well at home, I continued with the process.
We had a zoom conference with a surgeon in Boston and he explained the steps they would take if we proceeded. This was a surgical option and after meeting with Evie’s team again in Dublin, we realised this route was not the one we wanted to take. Enjoying Evie, no matter how short her life may be, was our priority. Surgery could be detrimental to Evie and uprooting our lives to travel to Boston might have been something we’d end up regretting.
We travelled back down to Dublin so my cardiologist could give mama and dad her opinion on Boston’s suggestion. The meeting didn’t go very well and mama had a panic attack. I didn’t know how to help her. It was hot in the room and we all just wanted to get outside again. The drive home was very quiet, so I slept for most of it.
When we got home, we collected the dogs and dad drove us to the sea. Mama carried my oxygen while dad carried me in my car seat and placed it on the pebbles. Mama and dad got into the cold sea to clear their heads, I waited for them to come back and when they did; I smiled as much as I could at them to let them know we were all going to be okay. We are the best team and we will always be okay.
Looking Forward
The decision not to pursue the second opinion in Boston is not one we made lightly. We have to figure out how our lives will look now that we aren’t pushing forward with a surgical option. Our main focus is back to just enjoying Evie and all of her magic. Evie’s future is so unknown so it has highlighted once again the importance of enjoying every moment. Since the beginning we have said that it’s up to Evie to show us the way 🕊️
