My Why

The Wonder That is Riley

 

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#RileyStrong

Sometimes I ask myself, how is this beautiful little girl is so strong... some strength you are born with and some you gain over time. She has both kinds in her soul.

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Our girl did not have a favorable start to life but we intend to make the rest of it full of love and hope! Hopefully this will be some kind of right order. She's had a lot happen!

Born at 27weeks 2days weighing 2lbs 5oz with a more than necessary traumatic birth because they didn't believe I was in labor all day so they stopped my contractions and her head got stuck causing a grade 2 brain bleed resulting in multiple PVL's in her brain (pretty much cysts). 

Was in the NICU for 2&1/2 months due to extreme prematurity as well as case #1 of meningitis... during that stay she had 100's of needle sticks for IV's, blood sugars, lab draws, 3 PICC lines (the last one caused a blood infection that got to her brain due to the bleed at birth), multiple head ultra sounds, NG tube for feeds most of the stay and many other things. She was on C-Pap for about the first month then was intubated when she got meningitis and almost died the first time. When she was discharged she got a diagnosis of acquired hydrocephalus.

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Just over a week after leaving the NICU the hydrocephalus was no longer stable and had to be rushed back to the hospital for her first shunt. She was there over a week when most shut placements it's a quick 24-48hrs and sent home. She started having more GI and feeding issues after surgery.

About a month after going home again we rushed her back to the hospital where we found out she got meningitis AGAIN! She went in for emergency surgery to remove her shunt and put in an external drain in her head (almost died again) she was in the PICU for 8 weeks recovering. While there she had at least 20 MRI's, so many sticks couldn't keep track, they had to put in a chest port as a last resort (was told the really didn't know what they were going to do if they couldn't get that line), back to Naso-Gastric tube feeding (staff gave her oral aversion during this visit), had two separate external drains placed, so many labs, x-rays you name it. 

When she finally was sent home she was still struggling to eat, so she was sent home with the NG tube for a couple months. Also she had two witnessed (by me) seizures during this stay. Who knows how many they missed before I saw her. She was on keppra for a few months. 

- Months later she had a shunt failure (VP shunt in her brain got blocked so Cerebral Spinal Fluid couldn't get out of her head) got another new shunt and a few days in the hospital.

- She's been admitted a few other times as well for different infections, most recent was a blood infection around Halloween 2020 when she spent two weeks in the hospital.

 

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