Cerebral Palsy by definition is a group...In this episode, the founder of Shine...
- Letters from Lex
- Shop LittleWins
- LittleWins Store
When I was trying to get LittleWins started, I interviewed 173 amazing families who opened up to me about their life stories. I wanted to build LittleWins into something that could be a helpful service for all, and if I could find the most common pain points amongst us all, maybe I solve those first. What I didn’t know is that people just like me were feeling just as alone. So, I led with my story. I said I know this is not easy; let me start with mine, and if you’re comfortable afterward, I’d be so grateful to learn from yours.
I tell you this now, in case anyone else needs to hear it, you’re not alone, and if you need it- I’ll go first—Ava’s Story.
I was shocked to find out I was pregnant with twins, to see not just one beating heart in that nine-week ultrasound but two. I was even more surprised when I found out they were both girls. Twin girls! Aside from my natural nervousness to be a mother of two babies, I had an easy pregnancy. I felt good. I worked out, took the vitamins, closely followed my doctors’ advice.
At around 34 weeks, there was concern from my doctors that the girls were running out of room in the womb and that twin B (Stella) wasn’t growing as she should be. So we were closely monitored, and at my 36-week checkup, my doctors decided the girls were near enough to full term for twins to induce labor.
And on November 5th, 2013, we went straight to the hospital, where I began the induction process. I labored all night and into the following day. The administered Pitocin was making Stella’s heart rate drop to a concerning level. After pushing three times to see if a natural delivery was an option, the doctors decided to have an emergency C section due to Stella’s dropping heart rate. Because I did not have a working epidural for so many hours, they had to put me under anesthesia. When that occurs in a “crash C,” the Father cannot be in the operating room.
I was alone.
I was worried for my babies but tried to remain calm not to let them feel my fear as I breathed deeply into the anesthesia. Then the room went dark.
When I woke up, I was in the worst pain. Searing pain like I’ve never felt before. I was still in the operating room, not yet moved to post-op, and there was quiet eerie energy. I heard someone say, “she’s awake.” I didn’t know where my babies were and felt as if the people remaining were almost avoiding me.
The nurses took me to a post-op room where I begged for medication, my body convulsing from the pain. I was met there by my now ex-husband, who had just seen the babies wheeled away separately. He told me Ava’s skin was purple and was on some assisted breathing machine manually operated by a nurse. I began to feel the dread, and if it weren’t for the unbearable pain in my body, I would have screamed, WHERE ARE MY BABIES!!!
Just then, a woman approached my bed and told me Stella was doing well and headed to the NICU for observation. She would likely stay there for a few days due to low birth weight and monitor her heart rate. Then, almost casually, the woman mentioned that twin A (Ava) suffered head trauma, lost blood and platelets, and was not breathing for 11 minutes. Ending with, she will likely be brain-damaged for the rest of her life. And then she disappeared. I felt the blood drain from my head. I struggle to find the words to describe the terror, my heartache, and confusion I felt all at once at that moment. What had happened?
As soon as they took me to the postnatal floor, the room I would stay in for the next five days, I was determined to see my babies for the first time. When it was going to be a while for a wheelchair, I walked. I saw Stella first; she was so tiny. She was magnificent as she peacefully slept in an incubator with a special light for jaundice.
The setting was not how I imagined our first meeting to be, but I didn’t care; there she was. My heart swelled with gratitude and love like I had never known.
I walked further down the hall to the PICU, where Ava was on 24-hour observation. I first saw a nurse glued to the screens, carefully watching all the attached monitors to my baby. I turned the corner to see her for the first time. She was naked, uncovered, motionless, and had more wires attached to her little body than I’ve ever seen. On her head was a tiny cap I later learned is called a cooling cap. Her doctors had recommended head cooling, which slows down brain activity, a helpful step for people showing signs of seizure-like activity.
I went to her side. I saw her face was so swollen. She looked like a sleeping angel, and suddenly I could no longer hear all the beeping of the monitors. I couldn’t see all the other people in the room. It was just us. I swallowed my tears, took a deep breath, and I said,
‘Mommy is here now, sweet girl, I’m here, and I love you so much.’
Doctors, nurses, and specialists came and went. I did my best to listen to their words, searching for an explanation. But, unfortunately, we still don’t know how Ava acquired what they referred to as a “mystery skull fracture.”
In the days that followed, I focused my energy on things I could control. I started pumping breast milk on a regular schedule. I felt it was the least I could do for my girls and the regimented schedule gave me a sense of normalcy. I stayed with them all day. I read to them, sang to them, told them about myself and their Dad. Every time I felt the fear and the dread for what this might mean for my daughter, I reminded myself of the simple fact, this is our new “normal.”
After the doctors discharged me from the postnatal ward, I returned home. My home, which I left ready to welcome twin babies, remained a daily reminder of what had gone wrong.
After two weeks, the doctors released Stella. And what I thought was painful leaving them at the hospital before was leaving Ava by herself. She had a list of things she had to be able to do to be released. I focused all my energy on getting her to achieve those goals. Miraculously and to the surprise of her doctors, she was able to in just one week. She was in the NICU for a total of 3 weeks. Not only had she survived, but she was also growing stronger every day, and it was in her strength and courage, I found my own.
The doctors gave us vague instructions on how to acquire the care she would likely need for the rest of her life. From the number to call for a state-run program (Early Intervention) to provide physical therapy, occupational therapy, and speech therapy; to some upcoming appointments for checkups, and that was that.
I made appointments with Early Intervention specialists. It only took a few weeks to realize that this program would not produce the sustained care that Ava needed. We got a different therapist almost every session, which meant spending the first half of the hour going over her situation, leaving little time for actual therapy. Hopefully, others have had a different experience, but this was mine. I was frustrated. I couldn’t find enough information on the internet, and none of the ‘What to Expect When You’re Expecting’ books I read offered anything close to helpful.
My sister-in-law, at the time, an OT in San Francisco, was connected to a very well-known pediatric therapist in the Chicagoland area. I’ll forever feel I owe a debt of gratitude for that moment. We got an appointment to see her, which felt like enormous progress. Although she couldn’t see Ava regularly due to her busy schedule, she gave us a contact for an OT who had been working with Easter Seals for 20+ years. I reached out to her and started Ava on a regular twice-a-week schedule with her. By this time, Ava was five months old. It became clear I would need to build my team of therapists, formulate a plan around their availability, and acquire the necessary letters of medical necessity and prescriptions for our insurance to cover what it could.
For years, she had nine times a week therapy. Some in-home and some at clinics. It was a lot to maintain and sometimes very heartbreaking to sit through when she would struggle or cry, but it made it all worth it when she showed progress, no matter the size.
Through this journey that continues today, I learned so much about this community that I had no clue of before. I started to think, what if I never got out of the Early Intervention program? What if I never sought private care? Couldn’t afford it? Where would Ava be today? I started talking to other parents and caretakers at the clinics we visited. I realized our pain points were the same. Our struggles, fears, journeys, and successes are so very similar, yet the means to acquire the care and equipment varies among other factors. I started to think about these families and their children daily. Every time Ava had a breakthrough moment, I attributed it to her effort and the access to the necessary tools she needed to thrive. I thought of the individuals I had met who may not be able to see the same success. I became obsessed with trying to find a way to help these people, my fellow members of this incredibly inspiring community, and that’s when LittleWins was born.
I’ll be eternally grateful to the families who walked me through their daily lives, their struggles, their triumphs. By no means did they have to, but they believed in this concept. Because of them, I found a solid plan for the first version of LittleWins.com, and it’s because of them that I will forever live up to the hope they instilled in me by sharing their incredible stories and listening to mine. All of it is for my kids. For all the kids who come up after them. It’s an honor, a duty, and a privilege to me. Thank you for your time.