Today our update is going to be a little different. I’m a numbers girl. I like to see odds and weigh different outcomes. Seth is the same seeing his dad is a retired math teacher and he grew up around numbers. The hardest part about Lennyn’s IPH (Intraparenchymal hemorrhage), IVH (intraventricular hemorrhage), and Hydrocephalus diagnosis is the unknowns and the having to wait til she gets older to see the impact this has had on her brain – with or without adding the complications of a shunt. Anyone who knows me knows that I’m an obnoxious, alpha female, control freak. Not being able to plan or control this situation is HARD.
Ive been reading A LOT of different articles in medical journals to better understand Lennyn’s complex condition. All three conditions are frightening and confusing on their own. Google is a scary place to be but instead of getting scared over what I’m reading, one thing that’s easy to see is that Lennyn is already beating the odds.
Hydrocephalus and IVH come with their own challenges, some the same of IPH (Developmental delays and CP). But today, let’s look at her IPH alone :
IPH is only seen in 10-15 percent of infants that have a bleed in the germinal matrix (IVH). Only 10-15, so right off the bat more PROOF that our girl is CLEARLY special ☺️. She should probably play the lottery or something.
IPH is most common in babies weighing less than 750 grams. Not Lennyn! That pork chop weighed 4 pounds (1927 grams)
Mortality is at 30-60 percent for this condition of bleed. Well our Lennyn is 100 percent alive and sassy too. Beating the odds again.
Survivors are at increased risk for cognitive and motor delays and complications including blindness, deafness, seizures, and cerebral palsy. Cross blindness off the list for Lennyn. This is however, where Lenn’s seizure disorder comes in play.
Studies show that 45 to 80 percent of IPH survivors are diagnosed with cerebral palsy. We have so much hope that Lennyn will also beat this odd. In fact, we’re certain that she will.
Regardless of Lennyn’s prognosis one is thing is certain, we’re ready for whatever is thrown at us and whatever lifestyle changes we need to make as her parents. Our family is also on board and ready. Everyone keeps saying how strong we are, or how brave we are. Know that our strength comes from Lennyn. That poor baby has been through the wringer. She’s the brave one. She’s the fighter. We’re just following her lead of courage and resilience.