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.
Lily's first picture
Lily first night home 54 days oldSchiz kid Highlight part 2 Liliy's story
My
mother & I went to Poudre Valley Hospital in Fort Collins, CO to
get a second opinion. I had brought the written reports & CD with
Lily's MRI results. This Doctor is a personal & professional friend
of my mothers' and we both wanted honest feedback on what to expect
for Lily's quality of life & what exactly her daily care would
entail. I was very anxious to get any & all the information on
schizencephaly that I could. She started our meeting by expressing
sorrow at Lily's profound diagnosis. She explained how physically,
emotionally & mentally exhausting it may be to provide care for my
daughter, and gave me information on signing over my rights and open
adoption. This was something that I had thought about before receiving
Lily's diagnosis because obviously she wasn't planned... This was all
so surreal, all the unknowns & infinite possibilities for her life,
I just knew that I couldn't walk away & entrust her care to
someone else.
Lily was still in the NICU at Children's Hospital but I had been meeting with all the service coordinators that I could to make sure that she would receive the maximum amount of therapies as soon as we were home. Lily spent 53 days in the NICU. She was home almost a month sooner than they led me to be believe she would be! Going back and forth from home to the hospital was hard. I rarely slept while I was there, her alarms were going off all the time because she would desat, then her heart rate would jump up, hearing tests, vision tests, neurologists, physical therapists, lactation, & the list goes on & on. I could not wait for her to be home! She was so tolerant of everything & her nurses kept telling me that she didn't present as most neurologically deficient babies. She came home on 1L of oxygen for the mandatory 30 days because of our elevation here in Denver, CO & her being premature & a multi vitamin supplement that she took orally with her bottle feedings. Lily has been healthy & we have been fortunate to not have many issues. Reflux & aspiration were the first noticeable problem, then she started having seizures.
Early Intervention provided Physical, Occupational & Speech Therapists that I got to interview & select to come to my home & work with Lily. She struggled to open her hands, track anything visually, hold her head up & drink from a bottle. She would also get extremely congested, I constantly was suctioning her nose, running a vaporizer & trying to keep her hydrated but eating was such a struggle. Every moment that she was awake I spent trying to feed her. She was burning more calories trying to eat than she was storing. For every 6 oz she drank she threw up 5 oz, then would be asleep for 40 minutes then wake up starving. This didn't happen with every feed but vomiting at least 3 times a day. Her therapists & I made light boxes for her to lay in, utilized pinwheels, bells,any crackly sounding or reflective materials, kinesiology tape, color therapy, sound therapy, aromatherapy, I used exfoliating gloves to "dry rub" all over her body to increase her bodies awareness & increase blood flow, side lying with correct body alignment to encourage mid line play, strengthening positions... On top of watching for seizure activity, doing her therapies & stressing about paying my bills; looking back I don't know how we made it through the days!
lily
MRI scan
Lily was still in the NICU at Children's Hospital but I had been meeting with all the service coordinators that I could to make sure that she would receive the maximum amount of therapies as soon as we were home. Lily spent 53 days in the NICU. She was home almost a month sooner than they led me to be believe she would be! Going back and forth from home to the hospital was hard. I rarely slept while I was there, her alarms were going off all the time because she would desat, then her heart rate would jump up, hearing tests, vision tests, neurologists, physical therapists, lactation, & the list goes on & on. I could not wait for her to be home! She was so tolerant of everything & her nurses kept telling me that she didn't present as most neurologically deficient babies. She came home on 1L of oxygen for the mandatory 30 days because of our elevation here in Denver, CO & her being premature & a multi vitamin supplement that she took orally with her bottle feedings. Lily has been healthy & we have been fortunate to not have many issues. Reflux & aspiration were the first noticeable problem, then she started having seizures.
Early Intervention provided Physical, Occupational & Speech Therapists that I got to interview & select to come to my home & work with Lily. She struggled to open her hands, track anything visually, hold her head up & drink from a bottle. She would also get extremely congested, I constantly was suctioning her nose, running a vaporizer & trying to keep her hydrated but eating was such a struggle. Every moment that she was awake I spent trying to feed her. She was burning more calories trying to eat than she was storing. For every 6 oz she drank she threw up 5 oz, then would be asleep for 40 minutes then wake up starving. This didn't happen with every feed but vomiting at least 3 times a day. Her therapists & I made light boxes for her to lay in, utilized pinwheels, bells,any crackly sounding or reflective materials, kinesiology tape, color therapy, sound therapy, aromatherapy, I used exfoliating gloves to "dry rub" all over her body to increase her bodies awareness & increase blood flow, side lying with correct body alignment to encourage mid line play, strengthening positions... On top of watching for seizure activity, doing her therapies & stressing about paying my bills; looking back I don't know how we made it through the days!
lilyMRI scanSchiz Kid Highlight On Lily Part 3
by Tricia SchizencephalyAwareness Dennis on Wednesday, May 2, 2012 at 2:56pm ·
Schizencephaly is a big scary sounding word, coupled with all these specialists telling you they don't really know that much about it is terrifying! Lily's biological father has never seen her or expressed the desire to understand what we go through on a daily basis. Without the support of my mom, step dad & boyfriend I don't know how I would have been able to make it through the very hard first months. I am a strong person & have always been very optimistic & positive about Lily.
I have tried my hardest to be the best advocate for her & make sure she has every opportunity to experience life. The hardest decision I have yet had to make for her was a surgical procedure. It took me 23 months to go forward with a g tube placement & nissen fundoplication. I was spending 9-11 hours a day feeding her, she wouldn't sleep for longer than 4 hours at a time, I was going to school to become a CNA and then she started having seizures. I was worried that with her reflux she wasn't retaining her seizure medicine & she was also not gaining weight. In my mind if you aren't getting the correct nutrition your development mentally & physically is affected, sleep patterns & you're temperament suffer. Lily deserved better than me just cleaning up her vomit & trying to feed her as much as possible the next time she had the strength to eat. I felt like a complete failure, I mean what kind of mother can't feed her own child?! I so desperately wanted her to one day just be able to drink from a bottle safely, and to be able to have some "normalcy". Now though I see her smiling, laughing, exploring the world & being so much more engaged, I truly wish I would've had this procedure done sooner. We still work on introducing foods to her everyday with different textures, purees & thickened nectars. We're currently working on using a straw & blowing bubbles.
In December 2010 previous to her gtube being placed she had Strabismus surgery. Lily's eyes, especially her left one, were constantly turned in. This surgery cut the muscles in the inner eye so that they would no longer cross, making her eyes sit level. The Ophthalmologist held the die up to my eye so that I could see the degree that her eyes were turned & there is no possible way she could have focused on anything, near or far! Just try it. Cross your eyes & try to focus on something, then move your head... Gives me a headache just thinking about that day! Lily had a bad reaction to the anesthesia & stopped breathing several times but other than that & blood shot eyes for several days, within a week I noticed her nystagmus (eyes shaking) diminishing, I felt she was able to track more effectively, neck strength increased & an improvement in her balance while supported sitting & tummy time.
Both of these procedures were done to improve the quality of her life but were not medically necessary. I can't help but feel that if my daughter was able to vocalize exactly how she felt, or explain how she understands her environment, that she would get better treatment. It is a terrible feeling to doubt everything you are doing. Is my daughter happy? Yes I think she is. It is evident in the sound of her laughter when being tickled, played with or talked to by her siblings, her beautiful smile or her sounds of distress when you walk away from her, or she reaches out & touches something that she wasn't expecting or didn't know was there, when we go places & she hears a new voice or feels the rain & wind on her face. She loves her life because she knows nothing else! I only hope she will always be so pure & happy. That is what I strive to provide for her everyday.
Lily in her Crawler
bath chair in the pool
Lily eating after her Gtube
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