Monday, April 30, 2012
part 1 Jennifers story. daughter of lily our schiz kid highlight
this is our second family we are highlighting
thanks so much for letting us share Lily's story
It was a typical Wednesday June 25, 2009. I recently just moved back to CO & was living with my mom & step dad. I came home from work ate dinner & watched True Blood on the DVR with my parents then went to bed. I woke up around 3am with back pain & abdominal cramps, it was around the time for me to start menstruating so I didn't think much of it, took Tylenol & plugged in my heat pad & went back to sleep. I called into work that morning & also told my mom I wasn't feeling well & was staying home. She had meetings in Denver that day about 1.5 hrs away but wanted me to call if I needed anything (It was very unusual for me to be sick, or miss work). Around 9am I started to have a lot of lower pelvic pressure, my back was aching & I felt like I had to urinate but nothing would come out when I tried... As I'm sitting on the toilet I look between my legs & can see a finger widths strip of hair!? Oh my god I'm having a baby!! I had been on birth control, never felt any movement, no morning sickness, I had my cycle normally, I was in complete shock! I tore the shower curtain back, placed my hand on the wall looked up at the ceiling & thought well if I can see hair the baby is ready & probably can't breathe. I strip off my clothes & start to bear down. Her head came out & I cleared her air way with my fingers, she cries!! My dogs come running down the hallway into the bathroom, I'm standing in the shower holding her head just overwhelmed trying to get my dogs to quiet down. I push out the rest of her body. I obviously wasn't expecting this so didn't have a receiving blanket handy... I grabbed my tshirt & wrapped her up, the whole time I'm waiting for contractions to start & the worst imaginable pain of my life but nothing is happening. It's been about 2 minutes I know I need to cut the umbilical cord. I put a hand towel between my legs & carry her to the kitchen. I grabbed scissors, a zip lock bag & wash clothes. Back in the bathroom I cut the cord, filled the sink with warm water & begin to wash her off. Still no contractions so I gently start pulling on the severed cord & the placenta came free, intact so I placed it in the zip lock. Lily this entire time is bundled up on the floor mats while I've cleaned up her, myself & the bathroom. I notice she isn't staying very warm so I strip down, lay her skin to skin on my chest & wrap us in my robe, while I text my mom. She is still in her meeting but will call me in 10 minutes... She was 90 minutes away & I didn't want to alarm her so I hadn't told her I just had a baby, just that she call me as soon as possible. I was very calm throughout the entire process, My water never broke, there was very little amniotic fluid when she did come out, I wasn't bleeding & Lily was breathing evenly so I thought everything was going well considering... My mom calls & I tell her the news, she is laughing (because I am quite the jokester) so I get off the phone & send her a picture message. She immediately calls back & says I'm calling an ambulance you are in shock!! I said mom I'm fine the baby is fine & I can't afford a $3000 ambulance ride. When you get here you can take us to the hospital, if the baby starts having difficulties I'll call but right now it's not an emergency. At this point my mom says, "Only you Jennifer!". Lily was gestationally 28 or 29 weeks (they had to guess because I didn't know that I was pregnant & had been having a regular cycle throughout) she was 14 inches long & weighed 2 lbs 9 oz. She was stabilized at our local hospital but they didn't have a NICU so she was then transported to The Children's Hospital in Aurora, near Denver Colorado.
The team there was fantastic, Lily was doing very well considering how premature she was. During transport she was intubated but was breathing on her own within 12 hours, she presented as a typical premie nothing seemed unusual. On the 10th day they did an ultrasound to look for a bleed on her brain, that sometimes happens with premies & the images weren't very clear so they ordered an MRI. This is when she was diagnosed with bi-lateral open lipped schizencephaly. I was told this was a very rare brain malformation, the umbrella term is cerebral palsy & that they didn't really know why this happens or what her quality or longevity of life would be. She also was diagnosed with CVI (cortical visual impairment) & Congenital Nystagmus.
When the attending neurologist Julie Parson, M.D. went over Lily's MRI with my mother & I, it was very difficult to focus on exactly what she was saying. I distinctly remember her saying she would more than likely suffer seizures, severe motor delays, have cerebral palsy with poor motor movement, vision and feeding problems. I took it all in, I was already overwhelmed with being a mother unexpectedly & then to hear this was just devastating. I asked if they knew which skills she would have difficulties developing with the areas of her brain missing, Julie said no, there really isn't a way to know because sometimes other areas of the brain can take over & new pathways be created. From that point on I refused to believe that my child would be a diagnosis or textbook. I remember going home that night & crying in my room for about 3 hours. Questioning why this happened! She had fought so hard to be here, was this really how her life was going to be?! How unfair!! They had given me some pamphlets with random statistics showing that 1:1,000,000,000 births resulted in schizencephaly, many were immobile, on ventilators, ranged from mild to severe mental retardation, were non-verbal. Basically the worst case scenarios & nothing dated within the last 15 years. Later that night I found Schiz Kidz Buddies a yahoo support group while looking for answers of my own on line.