|Type of Gift||Other|
|Diagnosis||Cerebral palsy, HIE, tracheostomy, GJ tube, multiple seizure disorder, non-mobile, non-verbal|
|Gift Requested||Financial assistance towards a handicap accessible van|
|Price of Gift||$5,000.00|
Why we requested this gift
We are trying our best to put together funds to get a handicap vehicle. With the current inflation amounts this is outside of our reach. She’s 6 years old now and getting to the point where it’s difficult to transfer her from a wheelchair to a car seat, and being able to wheel her directly into a car and strap her chair down would make life so much more manageable for most of her caretakers. It won’t be much longer until she’s a size that my wife and my parents (who help us a lot with her) are no longer able to make the transfer as we do now.
Harper is our youngest of 4 kids, and while she’s the most complex child we have when it comes to medical needs, in many ways she is the easiest kid in the world to be a parent to! A kid who is always happy to see you, is never defiant, never talks back, and gives unconditional love to you regardless of how many mistakes you make. After a traumatic first childbirth where we almost lost both mom and daughter in a 2 month early emergency c-section, we played it as safe as possible with this one. However, as much as you try to force life to submit to your will, that typically isn’t the way it works. We left for the hospital early in the morning hours the day of our scheduled induction, a morning we’ve replayed in our heads hundreds of times since then. On the way to the hospital, about halfway into our 20-minute trip, something went very wrong. Jami began to scream in pain, and we couldn’t not figure out what was wrong. Thinking it would take longer for the ambulance to get to us if we stopped, we continued on at high speeds up the interstate trying to get to the hospital. Jami and I walked(!) into the hospital and tried to get some help, but they saw the pregnancy belly and assumed it was just a mother going into labor. Once we finally got upstairs and they hooked up the monitors we knew the problem was much worse than we expected as they could not find any heartbeat. A crowd quickly surrounded her and took her away to the back with little information given to me other than sit and wait.
I waited for what felt like an eternity in a silent hospital without a soul around, only to have a nurse come back in the room fighting back tears. She told me they did all they could and now they were working on my wife who was in critical condition, and that’s all she could tell me. I had a very broken conversation with God for an unknown amount of time as it seemed like time itself had stopped. How do I deal with losing a child? How do I face life without my wife? Still quiet, through my own sniffles and tears, I heard footsteps running down the hall. The nurse came in the room eyes wide open, as if she was in more shock than me. She said that my wife was stable, and they got a heartbeat on the baby! At that moment, I knew a real-world miracle had happened, but it wouldn’t be until later that I understood how big it was. Once the doctors finally came in to tell me what was happening the picture not only became clearer, but the canvas grew many times beyond the initial sight. One they way to the hospital, Jami had a full uterine rupture, and the baby became lodged between the stomach and abdomen wall. The previous scar from the c-section with our first child had broken, and that’s the pain she felt. Harper was disconnected from Jami, no oxygen from the umbilical cord for some unknown amount of time. When they finally delivered her in the OR, she was stillborn. Zero APGAR scored on the first three checks, meaning no breathing, no heartbeat, no signs of life through the first 10 minutes. But minute 12…strangely my favorite number 12, the number I’ve had on every jersey since I was a kid all the way through playing in college, minute 12 they got a heartbeat! The doctor said most mothers don’t survive, and babies going as long as she did without oxygen rarely survive. In fact, they didn’t think she would make it very long, and if she did, she may have no brain activity.
They put her on brain cooling for 72 hours. EEG showed brain waves were very erratic and she was suffering from a multitude of seizures. They didn’t give her much chance at any quality of life at this point. Through a lot of sleepless nights, a lot of tests, and lot of medicine attempts to try and slow the seizures, she finally stabilized. They began to regulate her body, put in a feeding tube in the stomach, and we continued to pray. 2 weeks into her life we heard the most precious sound for the first time, we heard her cry! For the first time she made a sound, and it was the most beautiful sound I think we had heard. A sound so many parents dread from kids, and we were about to dance for joy in that dimly lit NICU pod! Since that time, she has continued to grow and develop way beyond what they ever expected her to do. She has a wonderful attitude that loves to laugh and be playful. Her memory is functioning and she’s so full of personality when interacting with those she knows. She loves music and dancing and lights, and even though she can’t make words, or hold her body up or even keep her own head upright, she makes the most of life and movement. Across her life we continue to deal with seizures, typically lasting over 20 minutes and needing heavy doses to bring her out, so we are very familiar with ambulance trips at night about every 2 months. We juggle about 16 different medicines daily to try and keep those at bay as well as deal with the other many issues. She had to have a trach put in place early on to help deal with the many respiratory infections she would get, but has done tremendous with it, despite the learning curve we as parents never thought we would overcome with such a device. She’s had VNS implants, about 20 GJ tube change procedures, and countless therapy visits, so many adaptive splints and devices for her body, specialist’s visits, and sleepless nights with oxygen alarms going off every so often. It’s all completely worth it, though, every time I see that little girl look at me with a side eye and start smiling wildly. Our focus in life around her has changed from the days of worry to now days of adventure and pushing past limits. Thankfully we no longer have the mindset of keeping her at home, tucked away safe from everything out there in the world, but rather we look for ways to get her out into the world to experience life abundantly. This little girl has inspired so many people to date and we want her adventures to keep encouraging others in similar situations to get out of the feelings of fear, guilt, or of being inadequate to handle this type of life.