Emily’s Story

I give birth to Elsie and Edie via C-Section on the 9th of April 2018. They are MCDA twins, which means they are identical and share a placenta but have a membrane between them whilst in the womb. They were born at 30 weeks and one day gestation. They were premature because we had Selective Intrauterine Growth Restriction (SIUGR) due to Edie’s umbilical cord being marginally inserted in to the placenta. We had a very complicated pregnancy that was closely monitored. At 16 weeks we were warned that the pregnancy could result in us losing one or both babies and there was also risk for them being disabled.

The best we could hope for was to reach viability. When we reached 28 weeks my consultant said she was looking for any excuse to deliver us, I said I was hoping to reach 30 weeks, she told me not to because that would be a miracle. I then went from weekly scans to every other day, I received steroids to prepare the babies lungs and I started being scanned daily. At 7:30am on the 9th I went for my daily scan and Edie’s blood flow had significantly changed, the girls needed delivering that day and after a very traumatic morning, they were born at 10:52am and 10:54am and our NICU journey began.

Elsie was born weighing 3lb 2oz and Edie 1lb 13oz. Elsie went on to spend 54 days in the unit, she struggled at first and was ventilated, she had a pneumothorax and required a chest drain and only had one big set back after that. She spent most of her time there because she was a lazy feeder and took her time to grow and learn her suck swallow breathe pattern.

Edie spent 98 days in the unit, she did really well in the first week but once the “honeymoon” period was over she deteriorated and at 4 weeks old we discovered she had a very large Patent Ductus Arteriosus (PDA) and was going to need heart surgery. She had this around a week later. She struggled for the first 48 hours or so but pulled through and went on to move from CPAP to High Flow support. She was diagnosed with chronic lung disease and it looked like she was going to come home with oxygen. She managed to get off the oxygen about a week before discharge. Which was a relief because Edie was struggling with feeding a lot, she went from being orally desensitised to hypersensitive, she had an oral aversion and severe reflux. She was also struggling with a floppy larynx and had barely no suck, swallow, breathe, pattern. Therefore, she came home Nasogastric (NG) tube fed.

Elsie and Edie are now very happy 11-month-olds (8 and a half months corrected.) Elsie does everything she is supposed to, she is on track with her development and growth, she loves food, music, car rides and has the most curious mind I’ve ever seen, she is a bundle of energy and is so full of mischief! Edie is still small for even her corrected age and she is a little behind with her development, but nothing that I wouldn’t expect of her. She still has feeding troubles but tries so hard on her weaning journey. She is always smiling and so laid back, she loves playing with Elsie, reading books and loves watching trees blowing in the wind. She is fierce and determined and has so much strength!

This is the girls’ story, it’s our story. However, it’s only part of it. I could go on about how the pregnancy and NICU journey impacted on the girls. But right now, I want to talk about how it impacted me. This is only part of my story.

During the pregnancy I was advised to stop doing so much and rest, so at about 18 weeks gestation I went on the sick at work and took a leave of absence from my University studies. I put my life on hold, and I sat, and I rested. I spent months reading and researching about premature babies, about our condition. Searching for answers, facts, figures, searching for what I should expect. I researched that Edie had a 40% chance of suddenly dying in the womb and if that happened Elsie had a 40% chance of also dying or being brain damaged as a result, I still think about that on a regular basis.

I lived from one scan to the next. Building anxiety throughout the week, then getting some relief at the next scan to know they were still alive (even if the scan didn’t go well in regard to blood flow and growth) but then would be instantly deflated once I left, because I had to wait again. I had to wait and hope that they’d survive this week and that nothing would happen between now and the next scan. That nothing would be missed, once we were viable that they’d be delivered at the right time. That they’d survive prematurity.

I felt conflicted and confused, I loved the babies so much already, but I was scared too, I was scared that I’d lose them and then my whole world would come crashing down around me. I wondered if and how I’d cope with that, I’d had thoughts about if I had to have a funeral for one or both of my babies, or if I’d lose them too soon and I wouldn’t even get that. I’d been asked at 16- and 17-weeks’ gestation If I’d consider “sacrificing” Edie to give Elsie a better chance in the womb, I was told I’d go to London and her cord would be lasered and she’d just die, and then be left in the womb until Elsie was born. They said not to worry because she wouldn’t look like a baby anymore by the time she was born. I told them I’d never do that, nature would do what nature would do. But is that all Edie was? My little baby as I knew her then…she was a “sacrifice”, like her not looking like a baby anymore would help at all.

I hated the language everyone used. I hated that everyone always wanted to talk to me like everything was fine. Wanting to discuss names, asking me if I was going to have a baby shower and talking about the normal baby things. When I didn’t want to pick names, that would make everything even scarier, even more real. I didn’t want a baby shower and sit and pretend like it was fine when I felt like I was at breaking point. I was consumed by what was happening to us, worrying, waiting, trying to prepare myself for every possibility.

When we finally got to their birthday, it was difficult, it was scary and hard for me, but I also felt relief, I felt relief because inside no one could help them. My body and their bodies just had to do it, or not, and we just had to wait and see. But now they had a team of people helping them. I thought I was prepared for the NICU, but the reality was that nothing can you prepare you for it. We got told lots at the beginning of our journey that we would have good days and bad days, no one warned us that with twins sometimes they happen on the same day. Which is the most emotionally draining thing I’ve ever experienced.

I wasn’t prepared for the things I’d see, the things I’d have to do to my own babies, the things I’d watch other families go through, the arguments and fights I’d have to have. I wasn’t prepared for the physical and mental exhaustion I’d feel. I just kept going, I kept fighting, I kept supporting the babies. My feelings could wait.

But after all was said and done, after the girls were home, after Edie’s NG tube was gone, after they were healthy and moving on, everything caught up to me. I was left trying to untangle all of my thoughts and trying to unpick all of the events that have happened that I just fought through at the time and never truly dealt with. I find myself going over things, time and time again. I have nightmares about the unit, about the girls, about them dying, or me losing them. I struggle to fall asleep at night.

I have major anxiety over enormous amounts of things concerning them. I struggle to let go of control, I trust very few people with the girls, and I struggle to adjust after having adrenaline coursing through my body for so long. I was absolutely not prepared for any of this. In the unit I always said I just want to get to a point where they’re home and healthy and then we can be happy…I feel guilt over the fact I find it hard to move on, this is what I wanted and what I hoped for and now I’m struggling. I am grateful to be here, that I have both my girls, and I get mad that it doesn’t seem to be enough. The guilt I feel over various things from pregnancy to this day is overwhelming.

I have always been strong, I have always been determined and just got on with things so I find it difficult to open up and admit that I struggle with these things. I feel like spending all my time caring for the girls, especially with the fact Edie still has complex needs, is my biggest blessing in life but also makes me feel like I’ve lost some of my identity. I went from part time retail worker who was studying law, working towards a career to my girls’ dinner nanny and personal performer.

But again, the guilt sets in because I am so lucky to be just that. I am lucky to have them, I’m lucky they survived, and they’ve escaped what they have. I’d take everything on my shoulders for them, which is why I try my best to just move on. However, it is so important for people to know that the NICU, pregnancy complications, birth trauma, complex needs and so on…can really impact on not just the babies involved, but their parents and families.

I grieve for all the things I feel I lost, the normal excitement of a baby, the planning, the shopping, the baby shower, the newborn snuggles, the third trimester bump, the control and learning on the job. But oh look, there is the guilt again.

I am working on dealing with my issues and facing the events of the past year and a half. But they’re real, the girls are my biggest inspiration and all that I do is for them and that is what gets me through my toughest times. I’m reminded on a daily basis what this was all for. I’m reminded that my anxiety, my trauma, my sleepless nights, my low moods and struggles is worth it every time Elsie smiles at me or every time Edie giggles.

We went through it all for them and they make me proud every day, I hope that one day they are proud of me for being able to share their story and admit that sometimes I feel defeated. But despite it I carry on. I want to teach them that it’s good to open up about mental health and to ask for help, it’s good to have these conversations and it’s also good to try your hardest to move on from trauma in life.

I am so grateful to everyone involved in our care, I have met real life heroes and I’m so grateful to all the people who support us and the people who not only ask about Elsie and Edie, as they are all that matters, but to those who also take the time to make sure I get a little bit of love too!

Facts & Figures

79% of parents said a neonatal stay affected their mental health

Leo’s saw a 337% increase in need due to COVID-19

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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