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Reagan surgery is set for Friday afternoon so please keep us all in your prayers πŸ’œ P.S - She is knocked out‼️ You knows she’s sleeping good when she got her leg cooped up and all πŸ˜‚πŸ˜©. #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu

❄️world prematurity day ❄️ when I was pregnant with Raya, it was discovered through an ultrasound that the ventricles in her brain were full of fluid, way more than they're supposed to be. They continued to fill up and up, which caused her brain to compress against her skull and as babies bones are very soft, her skull just expanded to accommodate it. I was having a scan every few weeks so the doctors could measure how big her ventricles were getting and how big her head was getting, as they were concerned about her brain being damaged from being compressed and also how I would give birth to her if her head got too big. My last scan was 30w+5d and they said she needed to be born the following week as her head circumference was 40cm, which was way above an average full term babies head circumference and I still had just over 9 weeks until my due date! At 32 weeks exactly, Raya was born via c-section. I was terrified that the damage to her brain would be worst case and she wouldn't make it, or if she did, she would be a vegetable. She had brain surgery when she was a week old to drain the fluid and has continued to thrive, despite undergoing 4 more operations to her brain and acquiring numerous other health and development complications. She's my hero β˜€οΈ well done if you read all of this πŸ™ˆπŸ˜‚ first pic is Raya at 1 day old, 2nd and 3rd is just before she had the fluid drained from her head, you can see how huge her head was from the pressure of having so much fluid inside her brain. 4th pic is after they drained the fluid, because her skull had expanded so much, the bone plates were practically floating under her skin then once over 1lb of fluid had been drained, they just caved in and overlapped eachother. I was worried she would always have a head that looks like a crushed Easter egg but thankfully it corrected itself in time β˜ΊοΈπŸ˜‚ well she still has a very big, odd shaped head but it's not as noticeable now that she's grown into it and she has rapunzel hair πŸ˜„πŸ‘ΈπŸΌ #worldprematurityday #preemie #32weeker #hydrocephalus #vpshunt

@Regrann from @komunitas_peduli_generasi - URGENT
#PeduliRidho #DonasiAlkes #Vpshunt #SaveHydrochepalus #rumahsinggahpeduli
Kedua orangtua bayi Ridho hampir saja putus harapan saat mendengar harga selang vp shunt yg dibutuhkan anaknya, untuk menggantikan selang vp shunt sebelumnya, dokter yg menangani Ridho di RSUDAM, menyarankan agar ridho harus segera kembali menjalani operasi dan mengganti dengan vp shunt yg memiliki kualitas yg baik serta elastisitas yg tinggi, sedangkan alat yg dimaksud oleh dokter ini tidaklah ditanggung BPJS Kesehatan
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Kondisi ridho saat ini sudah sangat mengkhawatirkan karena cairan (hydro) yg berada dirongga kepalanya terus menekan, bahkan lingkar kepala ridho sudah tidak wajar bentuknya, hal ini dikarenakan selang vp shunt yg lama tersumbat dan tidak bisa mengeluarkan cairan yg berlebih pada kepala bayi ridho
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Bayi Ridho (usia 8 bulan) adalah anak ke 2 dari pasangan bapak sugeng (kuli) dan ibu Rustiawati (ibu rumah tangga) kondisi sakit yg dialami ridho dialami sejak lahir, tidak banyak harapan yg diminta oleh kedua orangtua Ridho saat ini, hanya berharap puteranya segera mendapatkan alkes vp shunt dan dapat menjalani operasi sesegera mungkin, sambil menunggu bantuan alkes vp shunt dan tindakan operasi, ridho saat ini berada di @rumahsinggahpeduli yg dikelola komunitas peduli generasi.

Kepedulian kita adalah harapan mereka, tanpa bosan kembali para relawan mengajak orang2 yg berjiwa dermawan untuk bersama2 meringankan kondisi bayi Ridho, Donasi Peduli Ridho dapat disalurkan melalui Rekening Komunitas Peduli Generasi, Bank Mandiri 114 0010935685 An. peduli generasi
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"we care, we do, we share"

DM dari @komunitas_peduli_generasi2 .
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URGENT
#PeduliRidho #DonasiAlkes #Vpshunt #SaveHydrochepalus #rumahsinggahpeduli
Kedua orangtua bayi Ridho hampir saja putus harapan saat mendengar harga selang vp shunt yg dibutuhkan anaknya, untuk menggantikan selang vp shunt sebelumnya, dokter yg menangani Ridho di RSUDAM, menyarankan agar ridho harus segera kembali menjalani operasi dan mengganti dengan vp shunt yg memiliki kualitas yg baik serta elastisitas yg tinggi, sedangkan alat yg dimaksud oleh dokter ini tidaklah ditanggung BPJS Kesehatan
.
Kondisi ridho saat ini sudah sangat mengkhawatirkan karena cairan (hydro) yg berada dirongga kepalanya terus menekan, bahkan lingkar kepala ridho sudah tidak wajar bentuknya, hal ini dikarenakan selang vp shunt yg lama tersumbat dan tidak bisa mengeluarkan cairan yg berlebih pada kepala bayi ridho
.
Bayi Ridho (usia 8 bulan) adalah anak ke 2 dari pasangan bapak sugeng (kuli) dan ibu Rustiawati (ibu rumah tangga) kondisi sakit yg dialami ridho dialami sejak lahir, tidak banyak harapan yg diminta oleh kedua orangtua Ridho saat ini, hanya berharap puteranya segera mendapatkan alkes vp shunt dan dapat menjalani operasi sesegera mungkin, sambil menunggu bantuan alkes vp shunt dan tindakan operasi, ridho saat ini berada di @rumahsinggahpeduli yg dikelola komunitas peduli generasi.

Kepedulian kita adalah harapan mereka, tanpa bosan kembali para relawan mengajak orang2 yg berjiwa dermawan untuk bersama2 meringankan kondisi bayi Ridho, Donasi Peduli Ridho dapat disalurkan melalui Rekening Komunitas Peduli Generasi, Bank Mandiri 114 0010935685 An. peduli generasi
.
"we care, we do, we share "
@seputar_lampung @pemimpin_lampung @thenewbikingregetan @pedulisesama1@palembangbaru8 β„’@komunitas_peduli_generasi2

Even the toughest little girls get knocked down once in a while 😞 #LittleA has a medical condition called #hydrocephalus ....when she was 7 months old she had a tube placed in her brain called a #VPshunt it runs all the way from her head to her belly....long story short, #Avalyn has had a headache since yesterday and it was getting worse 😣 to be on the safe side she needed to visit the ER to get an MRI of her head to check her VP shunt and make sure it is draining the fluid like it's suppose to....we're still waiting on the results πŸ™πŸ½πŸ™πŸ½

Just had surgery to replace my shunt. It was a quick and easy surgery, less than an hour. But I'm really disappointed on how they messed my hair up lol. It's all good, im glad the surgery went well. #cedarssinai #vpshunt #nf1 #neurofibromatosis #surgeryaftersurgery

Why my Baby look like she ready to fight with her fist balled up πŸ˜‚πŸ˜‚πŸ˜© #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu

This post is bit graphic.....sorry!
Today marks 6 weeks post surgery and with a bit of jiggery pokery and lots of dead hair lopped off by my hairdresser, who would even know?! Shortest ive had my hair in years.....will take some getting used to.
#intercranialhypertension #iih #vpshunt #shorthairdontcare

MOST RECENT

WORLD PREMATURITY DAY!!! Naomi was born 25 weeks 1 day
Spent 91 days in the NICU
Has had a total of 6 procedures
Born 1 pound 14 ounces
Survived pneumonia at 2 weeks old
Survived multiple viral infections
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I’m very proud to be a mother of a NICU Baby, our warriors takes everything like a champ. Just scrolling through her old days makes me cry and reminisce the days in the dark and quiet rooms. Holding my baby that was smaller than a doll. Being told my daughter had a 15% chance of living. Having to have an emergency C section at 18.
I still picture myself being petrified on how such a tiny living baby could survive outside the womb.
#worldprematurityday #nicugrad #nicu #hydrocephalus #minime #hydrocephalusawareness #preemiepower #naomirhona #kidswithdisabilities #specialneedskids #warrior #vpshunt #shunthappens #specialneedsmom #preemiepower #nicutonoe #marchofdimes @marchofdimes @ourlittlepreemie

In ER. Forehead pain and squishiness. Hurts to palpate. We think CSF is leaking from the new burr hole (surgery site), into my forehead under the skin. Forehead pain, nausea, dizziness. Hoping for a quick admit and to get it fixed. #catherinesmedicaldrama #brainsurgerynumber18 #shuntetvcombo #vpshunt #hydrocephalus

...and just like that, she's TWENTY!! Shouting Happy Birthday to 1/2 of my reason for being! @menahbenah25 some say I'm hard on you, and maybe I am, but it's because I'm preparing you for being on your own & the people that'll cross your path. It's ok though & I know you'll be just fine no matter who crosses your path because God will ALWAYS guide and protect your footsteps!! He has since the day you were born & He'll never leave you! On 11/17/1997, I became a better person! I love you! πŸ’•πŸ˜˜β€οΈ Today is your special day, but we'll celebrate all weekend!! Click on this link and groove to Frankie Beverly & Maze...I dedicate his song to you today!! πŸ‘πŸ½πŸ‘πŸ½ #puredopeness #anoldsoul #myhero #myblessing #equestrianrider #specialequestrian #cerebralpalsy #epilepsy #hydrocephalus #hemiplegia #vpshunt #grateful #blessed #thankful #onegratefulmom

Going through paperwork and came across Em's daily schedule... you never realize how much you are actually doing until you see it written/typed out. Stay at home mom? Technically... but maybe more of a work at home mom!
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Β°#sahm #wahm #cp #cerebralpalsy #epilepsy #tubie #gtube #jtube #feedingtube #hydrocephalus #vpshunt #restrictivelungdisease #specialneeds #momlife #specialneeds #schedule #chroniclungdisease #prayersforemilyadeena #abugslife #adayinthelife #warrior

I am Officially 14 Pounds ‼️ keep me in your prayers As I get prepared for my surgery tomorrow πŸ’œπŸ’•πŸ™πŸΎπŸ™πŸΎπŸ’« #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu #wubbanub

See that Reagan got a new wubbanub ..Y’all won’t believe the story behind the elephant πŸ˜‚πŸ˜‚ the duck got dirty so my mom and I tried to get her to suck another brand . Let just say we about 20$ poorer behind the elephant wubbanub πŸ˜­πŸ˜‚πŸ˜© #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu #wubbanub

Exactly what I needed today! I saw my neurosurgeon yesterday and he is scheduling an angiogram. Through an incision in my groin he will pass a catheter to the central sinuses in my brain. At that point dye will be injected. This will show if one or both of my shunts are functioning as well as if there is any stenosis in my brain. I would be lying if I said I wasn't scared, but I know I don't walk this journey alone. #pseudotumorcerebri #iih #brainsurgery #survivor #lpshunt #vpshunt #spoonie #chronicillness #invisibleillness #neurosurgery #shuntlife #shuntrevisions #scarsdontdefineyou #diabetes #type2diabetes #needlessuck #bestneurosurgeon #medtronics #blessed #myjourney #itsnoteasy #idontwalkalone

Thank you Aunt Gaye! ❀️ I feel so loved! They are beautiful! #c#brainsurgerynumber18 #catherinesmedicaldrama #shuntetvcombo #ETV #hydrocephalus #vpshunt #flowers

I am in awe of my son's strength and courage to endure everything he has had to. πŸ’ͺ In his 16 years this was his 5th brain surgery. You my son are simply AMAZING!!! ❀ I love you to the moon and back. @dylan_irving1 (Dylan or Haileigh...tag JC) 😘 #hydrocephelus #vpshunt #chochospital

Reagan surgery is set for Friday afternoon so please keep us all in your prayers πŸ’œ P.S - She is knocked out‼️ You knows she’s sleeping good when she got her leg cooped up and all πŸ˜‚πŸ˜©. #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu

Why my Baby look like she ready to fight with her fist balled up πŸ˜‚πŸ˜‚πŸ˜© #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu

My Reagan is So chunkyyyyy β€ΌοΈπŸ˜πŸ˜πŸ˜πŸ˜ #rnrtwins #preemiestrong #teamreagan #warriorprincess #22weeker #preemie #VPShunt #NICUJourney #RipRaelyn #Nicu

Sea bands. Saving my brain right now. I’m super dizzy and nauseated due to the changes in fluid dynamics as we force CSF (cerebrospinal fluid) through the #ETV stoma. #brainsurgerynumber18 #catherinesmedicaldrama #hydrocephalus #vpshunt #shuntetvcombo

Here we go again, hoping the Dr's are successful this time. #inneedofrelief #intracranialhypertension #lumbarpuncture #vpshunt #brainsurgerysurvivor

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