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Shouting Evie's Worth

Health

Evie’s Very Special Heart

by Branaupdated on Sunday - 13 March, 2022Saturday - 12 March, 2022

When I was pregnant with Evie, we found out that she would likely be born with a set of heart defects too severe to be corrected with surgery. Our local hospital does not provide fetal …

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Motherhood

Bear’s Birthday🌈

by Branaupdated on Thursday - 10 March, 2022Wednesday - 9 March, 2022

Trigger Warning – miscarriage, emergency surgery

I go into quite a lot of detail on this post so please don’t read on if you are triggered by this topic or unless you have good support ❤️

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Motherhood

A Guardian Angel in Full PPE

by Branaupdated on Thursday - 10 March, 2022Sunday - 6 March, 2022

Trigger warning – miscarriage
A poem I wrote after our 12 week scan during the heaviest covid restrictions

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Family

Welcome to our new Website!

by Rossupdated on Wednesday - 9 March, 2022Sunday - 6 March, 2022

When your Dad is a former applications engineer comes with some perks… namely free web development services

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Family

Raw Motherhood

by Branaupdated on Thursday - 10 March, 2022Tuesday - 8 February, 2022

The following piece is taken from a post I shared on Instagram when I really felt at my lowest after the high of bringing Evie home from hospital. I posted this on Feb 8th, 3 …

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Down Syndrome Motherhood

Post for Love What Matters

by Branaupdated on Thursday - 10 March, 2022Sunday - 21 November, 2021

I was asked to write a piece for the website ‘Love What Matters’. This is what I wrote back in November 2021.

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Down Syndrome Family

Our Shooting Star

by Branaupdated on Thursday - 10 March, 2022Sunday - 18 July, 2021

This is a piece I wrote in July 2021 when we were patiently waiting for Evie’s arrival.

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  • S U R R E N D E R

My body aches from lying so awkwardly, I have to pee, I need a drink, my head is sore from broken sleep and probable dehydration. But lying here listening to your sweet little noises as you have your morning feed is the most special thing in the world. 

This won’t be forever, so I forget my own comfort and surrender to yours. You won’t always need me at this level of nurture but I will always need you. I need you to feel safe and loved and enough.

I can stretch and pee and hydrate later. For now, as you doze back into a slumber, I will smell your sweet breath, feel your soft dark hair against my lips and feel your little body relax as you dream of little birds.

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #surrender #motherhood #fourthtrimester #6amfeed
  • World Down Syndrome Day 2023 💙💛

10 weeks without our girl 😔

Evie, the most incredibly strong, goofy and magical little bird ✨ in her 17 months (plus 9 while I was pregnant) she taught us so much about living in the moment, not taking anything for granted, being silly, shouting at the plants. She also taught us so much about Down syndrome and paved the way for us to be welcomed into the best community there is - the Down syndrome and disability community, for which I am so happy to be a part of 💙💛

I love you all like family, the ones I’ve been lucky enough to meet in real life and everyone else who hopefully one day we’ll be able to meet. We will forever shout Evie’s worth and the worth of everyone with DS and disabilities 💙💛 little sissy will always know about her big sissy Evie 🥰

We love you chicky and we miss you more than words could ever say ♥️

Forever our little bird 🕊️

#worlddownsyndromeday #downsyndrome #downsyndromeawareness #evierenworth #riyahfayworth #littlesissy #bigsissy #sisters #girlmama #sillysocks #rockyoursocks #littlebird #littlebirdinthesky #foreverourlittlebird
  • TW- infant loss, miscarriage 

Being ‘mama’ is my absolute favourite thing in the world. I couldn’t imagine being anyone else ♥️

There isn’t a day where I don’t think of our 3 babies, so Mother’s Day really isn’t any different but it’s nice to acknowledge the journey to mama. 

Mother’s Day 2021, we went to Galway the night before to have our first fetal medicine scan with Evie. Last year we had lost our little Bear 3 weeks before but we spent the day with our families (both of our mums and 2 of my grans were there). This year we spent it with our little Riyah but missing Evie so much. 

I’ve always felt a longing to become a mother.
Meeting the right person and deciding to start a family finally made me feel like I was following my heart. 

Becoming a nurse felt like the right thing to do at the time but it never felt like a “calling” or something I wanted to pursue further. I always dreamed instead, of having my own tiny best friends to look after.

We tried for 7 months for Evie and when that pregnancy test was finally positive it felt like my dreams were coming true. We gave our little girl all the love and hope we could muster, and she outshone everyone’s expectations. Evie continued to light up the world right until her very last day with us ✨

Riyah’s arrival just 3 weeks after Evie’s death was beautiful and painful. Her name means strength and comfort, I can’t even begin to explain how true those words are. Our little rainbow has brought the light back into our lives 🌈
  • *****GIVEAWAY CLOSED*****
Winners announced, please contact the business pages to claim your prize 🤗

A massive thanks to the businesses involved and for everyone’s donations. We raised €3615!!! 💙💛

Giveaway for World Down Syndrome Day on March 21st in memory of our beautiful Little Bird 🕊️

Last year we raised €2505 for @theperfectgift_t21. Sinead puts together baskets of goodies and information for new parents with a baby who has Down syndrome. We received one when Evie was born 🥰

I’ve teamed up again this year with some lovely Irish businesses that we adore and who always showed Evie so much love and support. They have kindly offered these amazing prizes for you guys! 😍

Prizes include:

💙 @littleangelrose Miniland doll with Down syndrome
💛 @bubbababycovers cover and tag
💙 @lurgancotlane customisable macrame rainbow 
💛 @babyboo €50 voucher 
💙 @faunakids.ie €50 voucher 
💛 @cailiekins €60 voucher
💙 @lilandizzyofficial luxury baby gift box 
💛 @minidotsclothing Mini Legend jumper 0-10 years
💙 @fiadhandfinn A3 framed Irish alphabet 
💛 @blossomwoodtoys pull along Mary lamb
💙 @elaveskincare €120 worth of skincare - Elave Baby Skincare Essentials
Elave Skin Balancing Essentials
Elave Skin Hydrating Essentials
💛 @cosatto_ie Noodle highchair (any colour)

To enter:
-there is a link in my bio to an iDonate page for @theperfectgift_t21, please donate whatever you can and comment “done” on this post. Winners will be selected from the comments 🏆

Optional:
-like and save this post 
-tag a friend in the comments
-share to your story so we can spread the word 

Entries close midnight (GMT) on 21st March and winners will be picked on the 22nd. I will contact winners directly. Please be aware of fake pages (report and block) 

*Open to Irish entries only, international donations welcome 
*This giveaway is not affiliated with Instagram
  • ✨6 weeks of Riyah Fay✨

Riyah was weighed yesterday and she’s 5kg (up from 3.75kg at birth) 🥳 

She’s exclusively breastfed and even though I know things have been going well, doubt was still creeping in and making me think she wouldn’t have put on enough weight. She’s been busting out of the newborn sizes but the mind can be a funny place 🙃

When Evie was 6 weeks old, Ross and I decided to have an NG tube placed. We had been working around the clock trying to get enough milk into her while also trying to let her rest and also enjoy this strange new world. 

She was 2.92kg at birth and only 3.3kg at 6 weeks old, a tiny little dot. She lost the ability to drink from a bottle after the NG but we never regretted our decision. The weight gain after that was slow but steady and we could relax knowing she was getting enough 🥰 pumping and tube feeds with a little bit of breastfeeding was no joke though! 

Despite having low muscle tone and an inoperable heart condition, Evie did so well with the bit of breastfeeding we managed and I will forever be so proud of her (and me) for that 🐥

Riyah’s first 6 weeks have been so different, we’ve barely had to leave the house and no one is checking in on us all the time..everything a newborn bubble “should” be ♥️

The last slide is a message my gran sent me when we were in for Evie’s NG admission 🥹

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #foreverourlittlebird #flyhighlittlebird #evierenworth #shoutingeviesworth #eviesworthit #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #tubie #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent #childloss #lovingafterloss
  • I spent the past few days putting together a collage with photos of Evie. Seeing her smiley little face with our happy smiles makes me remember how much we lived in the present with her despite all that we knew about her health. 

I want to do the same for Riyah. She doesn’t have to face the same battles as her sister but that shouldn’t mean that we don’t live in the present and celebrate all the little moments with her too. I’m so excited to start bringing her on adventures just like we did with Evie. 

Someone bizarrely said to me recently “don’t let Riyah grow up in the shadow of her sister” and for me to basically get closure on Evie’s death and move on 🥴

Whatever about that being highly insensitive, grief is a personal journey and although you may learn things from other people who are grieving and others can be there to support you, no one should push their opinions on you or tell you how to grieve. 

Riyah will always know about her sister, we won’t ever stop saying her name and talking about how strong and brave she was. Just like we will talk about and celebrate Riyah for who she is ♥️

*for medically minded people - don’t worry, she’s not dehydrated 😄 her fontanelle sometimes dips like that even after a feed.
  • It’s easy to say I’ll never regret finding joy in the everyday moments ♥️

Another draft in my reels 🥰

#foreverourlittlebird #flyhighlittlebird #evierenworth #shoutingeviesworth #eviesworthit #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #cystichygroma #t21 #trisomy21 #theluckyfew #downsyndromeawareness #downsyndromeireland #dscommunity #hypoplasticrightheart #chd #heartwarrior #avsd #differentisbeautiful #littlebird #tubie #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent #childloss #lovingafterloss
  • This has been a while in the making 🥰

A little tribute to our rainbow fairy and my body for keeping her safe and nurtured ✨

My skin has always been sensitive, dry and eczema prone so finding products that work for me can be tricky. The body oils I’ve been loving since I was pregnant with Evie have been @voyabeauty, @weledauk, @my_expertmidwife and @naydayaskin ♥️

Nursing bras @hotmilklingerie 🤩 #gift

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #loveafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #pregnancy
  • I bought our girls little matching jumpers a while ago. It hurts my heart that they won’t wear them together. 

They’re purple because Evie rocked purple. It’s a colour I’ve never been drawn to but there’s no denying it‘s her colour. Flowers for Evie, a rainbow for Riyah. 

We have all of these photos and videos and wow am I grateful for them. Each little expression and moment saved in little clips and squares. Two sisters together. One day Riyah will probably see Evie as her baby sister. Forever our little bird ♥️

Thank you Linda @tiny_wild_designs for so lovingly making these jumpers and onesies for Evie and her sissy ♥️
  • One month of Riyah Fay ✨

One month of looking a new little face, with huge inquisitive eyes, smelling sweet milky breath, feeling soft baby hair against my lips, studying features, fingers and toes, looking for similarities or familiarities, a new little belly button losing the cord that connected us and kept you alive, learning together how to feed, feeling the comforting weight of you, and the warmth of you, telling you all about sissy and her adventures, planning our next adventures with you, enjoying the moments of not doing much, those moments are the most healing. 

One month of swollen, leaking boobs, sore nipples, sweaty nights with muslins and nappies stuffed down my bra, bleeding, taking medication and remedies for pain and constipation, being smelly despite showering an hour ago, painful wound, itchy stitches, oozy bits and gaping bits, waking up stiff from lying perfectly still as you snooze beside me, mastering side lying feeding in the middle of the night, napping at all opportunities, cold coffee and meals because feeding you is more important, being fed and watered by my amazing partner, short walks and slightly longer walks, tears of joy and utter sorrow, healing and grieving. 

Grieving and healing ♥️

*The second photo is one month old Evie 🥰

#riyahfayworth #evierenssissy #onemonthold #newborn #fairy #theluckyfew #loveafterloss #griefandjoy
  • I keep meaning to post more photos of Riyah here because I know how quickly she’s going to change. It’s so nice being able to look back on a timeline of Evie’s life and the little snippets of how our day was or what I was thinking at the time.

This is a space I created to share Evie’s story, and it will continue to be that. Riyah was with us for half of Evie’s life, she’s a big part of our little bird’s story too 🥰

#3weeksold #riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #loveafterloss #griefandjoy
  • Three weeks (earthside) of loving this sweet fairy girl ✨

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #loveafterloss #griefandjoy
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