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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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  • This period of transitioning from being Evie’s mama and also her full time carer, to losing her, drifting and waiting for the arrival of her little sister, and becoming parents all over again to both of our daughters has been the most conflicting time of my life. 

Evie had been giving us signs for weeks that she was beginning to slow down. It’s not that we didn’t notice, we certainly did and we felt the tug of what was to come, but it’s almost like we protected ourselves by remaining hopeful and continuing to live in the present. I’m so grateful that we did it that way. I’m so grateful that Evie taught us how to do that. 

I know that subconsciously we had already began our grieving for Evie. We have talked over the past two weeks about how lucky we are that we were able to treasure that time with her, even with that feeling of time getting shorter. We’ve talked about the potential that we could have lost her during a scary desat and how we don’t know if we’d ever have made peace with that. 

Caring for our daughter who was under palliative care from a few weeks old is the most rewarding thing I’ve ever done, especially as we approached the end of her journey. Slowing down and allowing her to spend her last few days and hours with us comfortable and safe in our arms.

I know people have said they are amazed at our strength, and I am so proud of us too. We are making it through the days - sometimes empty, sometimes numb. Guilt, disbelief and desperation slip through the cracks - all the healthy stages of grief, we have to keep reminding ourselves of that. 

But we also have fun, we laugh, we joke, we cuddle and cry, we look through our thousands of photos and videos of Evie and sometimes we can’t face them, we miss her more than words could ever say, but we still find joy in the little things and take Evie with us on our walks or trips into town.

Waiting for her little sister to arrive has been gentle and careful. It feels like we were given this space to heal and slow down once again by our little bird ✨

She’s always with us but I’ve shared this morning’s experience if you swipe over ♥️
  • I found another day in the life of Evie in my drafts. I’m so grateful that I never took any of these little moments for granted. 

Evie was so full of joy during all of the regular parts of our every day. She loved her routine and she definitely taught us both to slow down and enjoy the little things ✨
  • Her little wave and her “dada’s” 🥹♥️

#evierenworth #shoutingeviesworth #eviesworthit #fixeviesbrokenheart #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #cystichygroma #trisomy21love #t21 #trisomy21 #theluckyfew #downsyndromeawareness #downsyndromeireland #dscommunity #hypoplasticrightheart #chd #heartwarrior #avsd #differentisbeautiful #littlebird #tubie #ngtube #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent
  • One of our beautiful Instagram friends Niamh @lurgancotlane sent Evie this banner a few weeks ago when she noticed we were close to 100k “shouters”. I sent her this video of Evie 🥰

It’s so surreal that Evie isn’t here anymore but what an amazing job she did in her 17 months at shouting her worth and showing the world how amazing her little life could be despite the medical hurdles she faced ♥️

Thank you all for being here on this journey with us. I know only a handful of you actually got to meet her but so many more of you felt you knew her, her personality and joy for life shone like the brightest light and still does ✨
  • I shared this reel before but this was in my drafts so I’m sharing it again 🥰 she was so little! Always our little bird, always her home ♥️
  • We have all of these moments that will last a lifetime ♥️

On Evie’s last morning with us, she let us know she wanted to look out the window and then take one last walk outside around our house together 🕊️ 

We would have carried you forever chicky, thank you for always guiding us ♥️
  • This time last year we had a particularly bad day with Evie after she’d moved out of PICU onto the heart ward. The staff turned off all the monitors so the alarms stopped going off, they pushed a bed into her room and allowed myself and Ross to both stay with her, the purple spiral that signifies a patient is at end of life was put up on the nurses station. She was unresponsive and really weak all day.

We took turns lying beside her, holding her tiny hand and telling her how much we loved her, and how we had envisioned our future together - converting one side of the house for her to live semi-independently, telling her our favourite memories with her, making sure she knew it was okay to go if she needed to ♥️

I can’t get those two lost, scared but strong parents out of my head. All I keep thinking about is going back and telling them not to worry, that they would get a whole extra year with their little bird. An entire year of her infectious joy and magic ✨

And yet now, I feel robbed. 

A whole year has passed and while it’s filled with precious memories, adventures, some hard times but mostly love and joy, it’s gone now and we don’t know what’s ahead. 

None of us know what tomorrow will bring. But to an already grieving parent that’s the worst part. I know I’ll never be ready to lose her but I never want her to suffer. Each day she has declined, each day we’ve increased her meds and time spent on her mask, more and more signs that maybe it is her time. 

Part of me keeps flicking forward a few months where I can see us laughing and saying “remember when you scared us all again in January Evie?” 

The other part keeps trying to search for perfect moments to cling onto and remember of our time together this year. The last meal she had, the last walk we went on, her wonder at the world and the sky and the trees, where did we last go in the car, the way she silently giggles, and angry shouts when she sees her food bowl and you haven’t started feeding her yet, her ever so gentle touch as she traces my finger nails or my nose ring.

She’s learned so much this year, but she’s taught us so much more than that. 

Always our little bird ♥️
  • I heard this song on the radio a few weeks ago and although it’s not really my style, the words really resonated with me about our little bird ♥️

As we approach Pip’s birth date, I find myself worrying more and more that she won’t get to meet her big sister. Evie’s health has been so fragile lately, I feel like at any turn we could loose her.

But I hate thinking that way. I know that she’s going to have rough patches and that we might even be lucky enough to have her in our lives for years to come. 

Milestones in terms of development don’t exist in our house, keeping Evie comfortable is priority. But we do set miniature hopeful goals, like Evie’s first birthday, Christmas together at home, and now our 2 daughters meeting each other ♥️

#evierenworth #shoutingeviesworth #eviesworthit #fixeviesbrokenheart #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #cystichygroma #trisomy21love #t21 #trisomy21 #theluckyfew #downsyndromeawareness #downsyndromeireland #dscommunity #hypoplasticrightheart #chd #heartwarrior #avsd #differentisbeautiful #littlebird #tubie #ngtube #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent
  • You are perfect, Evie girl 🥰 but why do you look so grown up here? 🥹

It’s crazy to see how quickly she bounces back from an episode. She didn’t have a bad desat but between a 💩 and needing a suction she was close. These photos I took around 10 mins after. 

Her poor skin is also going through a breakout, it kind of has cycles where it gets worse and then clears again. Been using La Roche Posay Cicaplast regularly to help it. 

17 months in and it never gets easier being the one that has to cause (necessary) discomfort to your own baby 😔 her tube and tape changes have been more stressful lately (hence the patch job we’ve done to save this NG tube) but she’s just so happy and full of life most of the time which makes it all a lot easier 🥰
  • We had a pretty chilled New Years Day 🤗 it was all frosty and magical again this morning ❄️

We took Evie for her nap/walk down by the sea today and watched some surfers 🏄‍♂️ we also met an Evie fan which was so nice 😍

Oh, we also took our tree down 🎄 it’s so refreshing 😄

Her routine has been a bit off today so she’s had an early dinner and off to bed 😴 

What did you guys do today? 🤗

#evierenworth #shoutingeviesworth #eviesworthit #fixeviesbrokenheart #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #cystichygroma #trisomy21love #t21 #trisomy21 #theluckyfew #downsyndromeawareness #downsyndromeireland #dscommunity #hypoplasticrightheart #chd #heartwarrior #avsd #differentisbeautiful #littlebird #tubie #ngtube #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent
  • And so another year closes, a full year of being a family of 3 🥰 (plus dogs and cats of course 😄)

Things are going to look very different in a couple of short weeks. I’m so glad to have had the time to spend with Evie this year, it’s been such an emotional rollercoaster but the most incredible thing has been watching her grow and change from a little baby to a little girl 🥹

She’s the absolute light of my life and I’m so proud of her in every way. Welcoming her little sister is going to be just as magical 🥰

Happy New Year everyone ♥️

P.S. the spots on her little cheeks are the remnants of hand, foot and mouth which thankfully are all cleared up now 🥰
  • Evie was kindly sent The Babbler Play Kit from @lovevery.europe. This kit is designed for babies aged 13,14,15 months and it’s been Evie’s favourite so far 😍

She loves the carrots the most! 🥕

We have affiliate links in our bio, if anyone is thinking of investing in a play kit or play mat from @lovevery.europe, we’d be grateful if you used our links 🥰

#lovevery #loveverypartner #evierenworth #shoutingeviesworth #eviesworthit #fixeviesbrokenheart #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #cystichygroma #t21 #trisomy21 #theluckyfew #downsyndromeawareness #downsyndromeireland #dscommunity #hypoplasticrightheart #chd #heartwarrior #avsd #differentisbeautiful #littlebird #tubie #ngtube #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent
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