Well, clearly I have neglected this site a little too much… if I am being honest, it totally confuses me! I am not the most tech savvy person out there. I am going to do my best to sum up our chaos from the last 3 years…
Realistically, in terms of our ARPKD journey, things were stable until January 2021. Lillian maintained 25% kidney function for 3 years. There were constant med changes, but she/we managed. And, she did well. January 2021, things quickly went downhill. Let me back up by saying Lillian’s beloved nephrologist retired in September 2020, and things were a complete mess when he left. We returned from Michigan in January after being gone for a month, and Lillian’s labs were all over the place. Her phosphorus had gotten extremely high, her potassium was high, and her creatine was the highest we had ever seen it. We assumed it was a fluke, just bad labs after being sick…
It wasn’t a fluke. In fact, it was the start of Lillian’s rapid decline. Oh, I forgot to mention, we had just announced we were pregnant with baby girl #2! From January to April, Lillian continued to decline, going from 25% function to 18% in April. April 28th, we agreed with Lillian’s transplant team to activate her on the DR registration. This was a donor registration with higher qualifications, meaning a more specific match. We did labs the following Monday, May 3, first thing in the morning. By 1:00pm the next day, Lillian was listed on the regional donor registration. She had dropped to 16% function, and we didn’t have the luxury of being picky anymore.
7 days later…almost down to the very minute, we were in Gainesville for surgery prep. Those 24 hours, from receiving the call that they may have found a match, to driving to Gainesville, to waiting for surgery time… at the time, seemed to move at turtles pace, but now looking back, its almost a blur because of how intensely fast things happened. Lillian underwent a 6 hour surgery at 11pm on May 11 to remove her right kidney and receive a new donor kidney.
I was 32 weeks pregnant, miserable, and terrified. Lillian was asleep when they wheeled her down for surgery prep. They told us we would have some time before they took her back… okay well that time was seconds, because they administered meds right there in the hall, had us sign consents, and took her. She started to wake up and panic, as I did everything in my power to keep my composure, but I couldn’t. Tears rolled down my face as I handed my baby over to a team I barely knew, a surgeon I met just 8 hours ago, entrusting them with her life for the next 6 hours. I paced that room, judged and critiqued every painting in those halls, stared at the patient screens, and paced some more. I sobbed in that small waiting room, terrified, repeating over and over “Please God protect my baby.”
Lillian’s right kidney that was removed was over 16cm… the full grown healthy adult kidney she received was 10cm. Seeing images of my daughter’s kidney broke me. I can search all day and see other peoples cystic kidneys, but seeing the monster that was inside my baby hurt. You feel helpless. Her surgery was/has been an amazing success. She spent 7 days in the hospital, of course stealing hearts and amazing every doctor that met her. She pushed herself and conquered every obstacle in front of her. She pushed through pain like nothing I have ever seen before, even refusing to take anything for pain, not even Tylenol. The next several weeks were spent going back and forth to Gainesville numerous times each week for labs and clinics.
4 weeks after Lillian’s surgery, I went in for a regular high risk check for baby girl ball (Quinn). I was 36 weeks pregnant with my c-section scheduled for that Friday, when I would be 37 weeks. I was by myself as we expected this to be a quick appointment for a “routine” amniotic fluid check. My appointment was at 3:00… well, in true Ball fashion, things weren’t okay and quickly changed.
I was sent downtown for monitoring, as they were not finding any amniotic fluid. Joe met me downtown, and I was monitored for 30 minutes. By 5:30, we had decided we would be having Quinn “later” that evening… Again, things happened at super speed, and Quinn was born via C-section at 7:45pm. Quinn Renee is now our second ARPKD warrior. Unlike big sister Lillian, Quinn was able to come home with us immediately after a few hours in the NICU for monitoring.
Just two weeks after entering the world, Quinn had her first ICU stay due to low sodium. This was a short visit, but involved a lot of adjusting and monitoring to be continued at home. Fast forward to August, things got very scary, very quickly (I’m realizing a theme here as a share this). Joe was in Michigan for his father’s passing, and my sister had flown down to meet Quinn. Lillian, Quinn and I drove a street over to my dad’s house… as I took Quinn out of her car seat, I immediately knew something was wrong. My baby was grey and clammy… struggling to breathe.
Over the next 3 days, I called 911 three times, and we were transferred via ambulance twice, the entire time Joe is still in Michigan. On August 8th, Quinn was admitted to the Wolfson’s ICU, Joe arrived home late that evening. Tuesday, August 10th, Quinn was diagnosed with Hypertensive Cardiomyopathy, having only 15% heart function. Our world felt broken. At that time, it was explained to us the Quinn was hanging over the edge of a cliff, barely holding on. There are moments from those first few weeks I didn’t share then…
There were too many times I saw my baby fighting for her life- literally. I stared day in and day out at an emergency surgical resuscitation kit, prepared and ready at her bedside… I stared at her resuscitation plan, terrified, feeling like I am choking on my worst fears. We struggled with infertility and 3 miscarriages for over 6 years, so Quinn not only is another ARPKD miracle, but a rainbow baby. Never in a million years did I anticipate ARPKD AND this… this felt so much worse. It felt like I was losing her, losing the miracle we prayed for for so long. There were so many ups and downs in her extensive ICU stay. After a week, she was transferred to the Cardiac Intensive Care Unit where she would stay for several weeks. She came home on 12 medications and an extensive outpatient care plan… she also came home with an amazing group of doctors and nurses that we will forever love, cherish and be close to.
Unfortunately, Quinn was only home for 2 days before being readmitted to the CVICU for an infection. Luckily, it was a shorter, simpler stay. Still, hard nonetheless.
She is now nearing normal heart function, and being followed very closely by her beloved cardiologist and nephrologist. We transferred her nephrology care to the same Gainesville Doctor Lillian sees after numerous issues and errors with her Jacksonville doctor.
So, needless to say, Joe and I are exhausted. I actually don’t even think that’s an accurate description anymore, were far passed that! We’re in a constant state of worry. Between Lillian’s labs, risk for rejection and immune compromised state… and Quinn’s heart function, blood pressure and also compromised state, there is a lot of high stress moments and fear.
All of this being said, we are blessed beyond measure. Lillian’s surgery happened so quickly… but immediately, neighbors stepped in to watch the dogs, mow the lawn, send meals, offer hospitality, and send numerous care packages. We came home to the streets decorated in green ribbon and friends in driveways welcoming Lillian home to a decorated home and yard with goodies! Quinn’s CVICU stay not only was hard on Joe and I, but Lillian. She did not handle the anxiety well, but without the help of friends and her amazing teachers and counselor, we would have struggled much more. We never had to worry about a meal, whether be it at the hospital or home, for 8 weeks. We were gifted Starbucks to keep us going and gas for the constant 40 minute drive multiple times a day. Joe was out of work for 10 weeks, and our family, friends and neighbors stepped up in a big way so we could all be where we needed to be. Someday I will find better words than “thank you”… I promise!
It feels like the last 6 months have flown by, but at the same time, its been the longest 6 months of our lives. We are beyond blessed to have the utmost amazing support. I promise to do better to update this site!
Please continue to share the girl’s stories, spread awareness, send love and lots of prayers. Lord knows we need them, CONSTANTLY! They are sooooo appreciated!