addie.belle addie.belle

3790 posts   8034 followers   4728 followings

Our Family Through The Lens  We love playing in the dirt, small shops, Jpeg, & Daddy. A personal and raw look at our medical journey with a micropreemie with short bowel syndrome.

https://youtu.be/U7v4YgCls8w

This photo pretty much sums up being a mother

Please swipe to see my yummy girl and the faces she makes when running.😀😀
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@kkrzaa 🎀
@five_little_moons romper

At Crash Boat Beach in PR during an overcast golden hour. .
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Custom romper from @five_little_moons

We got a lot of new followers yesterday and hit 8k!! WOW! For all our new friends I wanted to take a moment to introduce ourselves. John and I were college sweethearts and have been together since we were 19 and married for almost 6 years. We had Adeline via IVF after years of trying , 1.5 years going through fertility treatments, and 1 miscarriage. I could not get pregnant due to low ovarian reserve (not enough eggs). It was a high risk pregnancy due to an elevated hormone (PAPP-A) and restricted blood flow to the placenta. Those risks can cause preeclampsia and IUGR and I developed both of those and began experiencing high blood pressure at 23 weeks and delivered at 26 weeks via emergency c section. Adeline was born weighing 1lb 8oz and she spent 114 days in the NICU. At 3 weeks old she developed NEC and had many GI complications including one surgery along with a grade 3 IVH. I left my job as Director of Education when she came home from the NICU and since then our GI and growth complications have continued. Adeline has had 8 GI related surgeries, and has spent 13/20 months inpatient. Currently she is on TPN for most of her calories and receives the rest of her calories via GJ tube. She has some developmental delays and is in early intervention for EVERYTHING and making incredible progress. Adeline has some undiagnosed issues with her glucose, liver enzymes and a potential CP diagnosis. She has been diagnosed with (functional) short bowel disease which causes most of her issues with growing and eating. She has several other GI diagnosis but basically it's really hard for her body to handle of all the calories she needs to grow. She is an absolute delight and is an incredibly happy kid despite all that she goes through. She loves to get dirty, play in the mud, water, and her favorite people is her daddy, her dog, and her nonna and pop pop. We share our very honest journey with all of you on insta in hopes to connect with other families going through similar things and also to spread awareness! Thanks for following along ❤️❤️

End of our first day real day in PR with a beautiful sunset in downtown Cabo Rojo. Off topic but Adeline is slowly getting better. We've had two random fevers yesterday and today her culture is still positive, and lots of loose stools so we aren't out of the woods yet. She is tiring easily, cranky, whiny, but each day gets a little better. I cancelled all her therapy today and most likely will do the same tomorrow. Her white blood cell count has dropped quite a bit so we need to be careful and they took more blood today . She will keep pushing and hopefully each day will continue to be better than the last. #fighter #myhero

Adeline in Puerto Rico about ready to head into Cabo Rojo so mama can get a passion fruit mojito! 🍹🍹 .
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Adeline is wearing her favorite @kkrzaa who just launched her summer line and is having 20% off sale and @ella.b.denim shorts who is having another launch 6.8! #ellabdenim

Naked time on the beach in Boqueron , with a broviac and a GJ tube!! So many people look at Adeline and then hear her medical history and seem shocked. The way she looks and what she has been through/still fighting doesn't really match people's expectations . Each time we meet with a new provider I hear the same thing, "she isn't what I expected." She can even be misjudged when we are having a rough patch (even by doctors) because of her affect and charming little self. 96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and may act as if they didn't have a medical condition.
Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way. This is part of the reason why I post ALL of Adeline, the good, the bad, the in between. Her journey is not all sunshine and roses with big smiles, and I feel like I need to be honest about that. She is so strong, but this week was another reminder of how fragile she still can be. #invisibleillness #invisibledisease #shortgutsowhat #fighter #puertorico

Ok everyone full disclaimer that I finally went through all of our PR pics and have tons to post!!! I'll be blowing up your feed with 🇵🇷🇵🇷🇵🇷!! Many people comment on how expressive Adeline is, and how she makes crazy faces. All I have to say is she is #herfathersdaughter !! #puertorico #caborojo #boquerón

#micropreemiemonday
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First real bath in the NICU ➡️8 month old photo shoot and few days before she got her G tube/Nissan➡️yesterday in the bath

Those eyes sure do tell a story .
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@bff.and.co 🎀 ADELINE10 for 10% off
@ella.b.denim colored pocket shorties

A few hours before she got super sick. We went to our local farm @baughers_orchard and got some freshly picked strawberries and then some homemade vanilla ice cream from @hoffmansicecream to make some 🍓 milkshakes for Daddy! .
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@bff.and.co 🎀 ADELINE10 for 10% off
@ella.b.denim colored pocket shorties

"Mamaaaa muck" is just about all I hear from her since Wednesday night. Thank goodness we still breastfeed, despite the not so subtle comments and questions about it. She loves it, I love it (when it's not all day everyday), and we are going to keep doing it until we are both ready (or no longer developmentally appropriate). Can't wait until this girl is back to herself. #soapbox #normalizebreastfeeding

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