Hypoxic Ischemic Encephalopathy

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Complications of birth injury

When I was born the doctor told my mother I may have lost oxygen to my brain. I also had a hole in my heart, and saw a specialist until I was eight years old. When I was three months old I saw a neurologist because I was not sitting up straight. I always had a hard tim with balance, and never learned to ride a bicycle. As a young adult I had seizures. Later in life, I did a search of these symptoms and came up with hypoxic ischemic encephalopathy (HIE). This term seems to fit me, but doctors never put all the pieces together.

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Nursing and in home care during COVID-19

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE


Gratefully Grieving

Have you ever had a feeling that you almost can’t describe? A feeling that you’re really not even sure if anyone else has ever felt? Maybe it’s embarrassing or you think nobody else will understand so you keep it to yourself. I have this feeling almost daily.

My daughter was born into mass chaos. She was completely lifeless and grey. She was rushed out into the hallway and resuscitated and immediately put on a ventilator. Within an hour she was on life support and put into hypothermia. It turns out that we had what is known as a fetal maternal hemorrhage and it basically means that her body bled into mine while she was still in the womb. She had no blood in her body, which meant she wasn’t getting oxygen to her brain. For days the doctors prepared me for her to die. The neonatologist was constantly telling me how sick she was and how he’s never seen a baby with FMH with as little blood as she had bounce back, and at the very least she would be severely brain damaged.

When she was 14 days old she had an MRI that showed massive brain damage. The neurologist, a neonatologist, and a few others came in on day 15 and explained that she would never live a normal life. She would never eat on her own, she would never talk, she would never walk, and she would be solely dependent on her dad and I for the rest of her life. They diagnosed her with a condition called #PeriventricularLeukomalacia secondary to #HypoxicIschemicEncephalopathy. It meant that she would have #CerebralPalsy as well.

Fast forward 2 years and she does everything that she was never supposed to do, except walk. She talks constantly, she feeds herself everything that we eat, she’s never had a feeding tube, and she’s working hard on motor ability so that eventually she can walk.

Here’s where that weird feeling comes in…

As her mom who once thought she would live in a vegetative state, I am obviously overjoyed that she couldn’t be further from a carrot, but I’m also sad. I’m sad for her that she has to work so hard at everything, but I’m so thrilled that she has abilities that exceed all expectations. I’m sad that she’s 2 and instead of going on Friday morning play dates we head off to physical therapy, but I’m happy for access to amazing therapists who are helping her everyday. I am extremely thankful for a daughter who tells me “love you too!” but I grieve the daughter who I chase around the kitchen and licks the spoon after we mix up brownies together.

I get so caught up in how I think I “should” feel rather than just letting myself feel, and I think a lot of special needs moms do the same. We have it engrained in our minds that we should be grateful for EVERY LITTLE THING, and we are, but it’s okay to also grieve those things we don’t have and don’t get to experience. Maybe I’ll start referring to this as grateful grieving so I feel okay about letting it happen. You should do the same if you find yourself in this position. Give yourself grace mama, and remember that emotions are normal and we’re buckled into this rollercoaster together.


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