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Health

Boston and Second Chances

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

Some raw thoughts about the second opinion we received from Boston

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  • There’s no one else other than you I can imagine being on this journey with ♥️

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #rainbowbaby #doublerainbow

#foreverourlittlebird #flyhighlittlebird #evierenworth #shoutingeviesworth #eviesworthit #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #trisomy21 #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent #childloss #lovingafterloss #survivinginfantloss
  • We took Riyah on her first hike, the same mountain we took Evie to when she was less than 6 weeks old (we only made it half way up) and again in April 2022 when she was 9 months old and had her oxygen tank. We made a YouTube vlog about Evie’s hike 🥰

In true Worth baby style - they both screamed at the top of the mountain 😅 We managed to settle Evie and she slept the whole down, but Riyah screamed the whole way down instead only stopping for a quick boobie feed half way down 🙈

Taking Riyah to the same places as her sissy is really important to us. Being in these places sometimes can feel really hard, but it allows us to talk about Evie and tell Riyah about our memories with her sissy and the amazing things she achieved despite her medical challenges ♥️
  • Missing Evie hit me like a train yesterday. She’s never not on my mind but sometimes the pain is unbearable. A big cry usually brings some relief but not this time.

We had a really wholesome weekend with family but there was an Evie sized piece missing.

Ross had some days off work so yesterday we packed up the van and headed to one of our favourite beaches for the night. We went on a hike today with Riyah and talked about the time we brought Evie there. 

Bringing our babies on adventures is such an important part of our parenting and it’s helping a lot with grief ♥️

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #rainbowbaby #doublerainbow

#foreverourlittlebird #flyhighlittlebird #evierenworth #shoutingeviesworth #eviesworthit #downsyndrome #congenitalheartdefect #hypoplasticrightheartsyndrome #trisomy21 #heartfailure #pulmonaryhypertension #palliativecarebaby #oxygendependent #childloss #lovingafterloss #survivinginfantloss
  • Riyah’s first overnight van trip 🥰

We stayed local in case we needed to run home in the middle of the night with a screaming baby - but luckily she loved it! 

She fell asleep in her sleeping bag (I brought the arms in case it got chilly but she didn’t need them) Ross and I slept in sleeping bags either side of her. The van needs a bit of TLC but it was a nice taste of potential trips in the summer. 

A little Evie sized rainbow hung around for the evening ♥️🌈

We took Evie on one overnight van trip when she was 4 weeks old 🥹 we melted her bottles trying to sterilise them and didn’t leave the van once 😂 

The van was a necessity with all of her medical equipment whenever we were staying somewhere else though. The bed in the back made a comfy pit stop for changing her nappy or tube feeding her and we often put her in the UpSeat for lunch on the road 🥰

I’m so glad we get to tell Riyah when she’s older that Evie did a road trip to Scotland in our van too 😍
  • We’ve levelled up 🤩 

IYKYK - hips are for carrying babies 😄

#riyahfayworth #evierenssissy #newborn #threemonthsold #3monthsold #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #rainbowbaby #doublerainbow #hipcarry
  • Just me and my little best friend helping each other navigate this strange world ♥️✨

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #rainbowbaby #doublerainbow #3monthsold #14weeksold
  • A perfect mix of mama and dad, sprinkled with a little extra sparkle from sissy ✨

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #childloss #rainbowbaby #doublerainbow
  • It’s been 4 months without seeing Evie’s beautiful face and sun beam smile. 

We talk about her everyday. Some days we feel so proud and grateful for the life we gave her and the joy she gave us. Other days feel close to impossible. 

Missing Evie hurts more than anything I’ve ever experienced. 

Having her baby sister to show up for everyday definitely helps me, and having Ross who understands the same pain as me 😔♥️
  • A few little tricks for trapped wind or colicky babies 💨

Tummy time helps with digestion and usually results in a burp or a toot. Try not to do tummy time too soon after a feed 😄

I L U (“I love u, but upside down)

Draw the letters on their tummy upside down, starting on baby’s left side with the letter “I” 

Bicycle legs are usually a winner for releasing trapped wind, and also a squat position with their legs. 

Draw little circles in a clockwise motion around their tummy start on their lower right side and work your way around in an upside down U shape 🤗

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #colic #trappedwind #gassybaby #colickybaby
  • I’m a few days late but here’s to 3 months of getting to know our little fairy ✨

I’m so glad her birthday was the 31st, exactly 18 months after sissy was born ♥️

Born “late” in the eyes of the maternity services but we know she was born at the perfect time 🥰

She’s super smiley and super sensitive. Hates the car but loves to sleep all night. Growing like a weed, and more beautiful everyday. We love you little sis 🥰

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #threemonthsold #fourthtrimester
  • Beautiful little fairy, you’re 3 months old! So alert and intrigued by the world around you 🥰

When Riyah was born I really struggled with recognising her and getting to know her. 

I knew we were connected and I knew that I would do anything to keep her nurtured and secure. But after 17 months of being Evie’s mama and looking at her, and then this new little face was here. It took around 3-4 weeks for me to actually recognise Riyah. 

It sounds strange, but I guess I was looking for Evie’s features so much in those first few weeks. 

Riyah looks so different to Evie but every now and then she’ll have a similar little expression. But really she is her own little person and that’s lovely too. No one will ever replace Evie and that’s not Riyah’s role.

We love her for exactly who she is and it’s been so fun watching her personality develop ♥️

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #threemonthsold #fourthtrimester
  • Bottle, boob, tube, cow, goat, soya, combi, exclusive, donor…babies are fed all kinds of ways for all different reasons. 

The best part about the way you feed your baby is that it’s a decision you made that was right for your circumstances at the time. 

We should be supporting each other and accepting that the way we decide to feed our baby might be different from the next person. There’s no wrong or right, the only problem is when there is lack of support. 

Parent-shaming is so common and it can be in the subtle (or not so subtle) comments from family members, poor advice from health care providers or the blatant unsolicited “advice” from others.

Do what feels right for you, do your own research and seek out support from people who are able to provide it without making you feel like an awful parent! ♥️

#riyahfayworth #evierenssissy #newborn #fairy #theluckyfew #lovingafterloss #griefandjoy #breastfed #postpartum #mama #babygirl #motherhood #fedisessential #threemonthsold #fourthtrimester
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