Where to begin with this gift named Abrielle….
During her 20-week ultrasound doctors noticed an abnormality with her kidneys. Further ultrasound confirmed that she in fact only had one kidney and its placement was lower and more centered than typical. Later, they informed us that the existing kidney did not appear to be fully functional and what that could mean for her going forward. The only fear was in regard to any limits it might place on her quality of life. Those fears were quickly displaced upon her arrival as her personality showed she would outdo any limits that might be placed on her.
Her first act was tricking her doctors into thinking she was a normal sized baby. As she came into the world at 11 1/2 lbs. of juicy baby cheeks. She spent the first 30 days at the Duke Neonatal Intensive Care Unit and then she was home. Once home, she did what typical newborn baby girls do… she enslaved the entire house with her overwhelming cuteness. And as she grew, it was immediately apparent that she would use this super power as a weapon to love on those around her. She is without a doubt, the most caring, thoughtful little girl I know, which only amplifies her powers! She’s a sharer and a feeler in a world lacking both who doesn’t know what a stranger is. Her only kryptonite are shots. She will happily throw me under the bus to avoid a shot. Of which there are many. Even still, she has exuded the very meaning of her name, “God is my strength.”
The doctors were hopeful that she would be able to thrive with the one kidney despite its function only being about 23%. They informed us that the key to reaching that goal would be to keep the kidney from insult by dehydration or injury. As time progressed, that 23% dropped to 20%, then 18%, then 15%. They explained that as she was growing, her kidney was not well enough to keep up with the demands of her bigger body. She was also under weight, as one of the functions of the kidney is to help regulate growth. She underwent surgery to place an external feeding tube that would allow us to feed her while she slept at night to gain more calories as kidney issues can severely diminish a child’s appetite.
For the next 2 1/2 years as we slowly made growth gains, her kidney function equally slowly lowered. At this point we knew that dialysis would be on the horizon, but the doctors and ourselves were working to keep that reality at bay for as long as possible to give her as normal a child experience as one in the situation could wish for. Who knew that right around the corner in the late fall of, a simple UTI would make the decision for us.
Usually, in a body with two normal functioning kidneys, something like a UTI is concentrated in the bladder and fought off by the kidneys. In Abrie’s case, the UTI had made its way through the bladder and into the kidney itself causing its efficiency to drop to single digits. What started as low-grade fever turned into a 45-day hospital stay and an additional surgery to place a peritoneal dialysis catheter. This is the point where they categorize a patient with end stage renal kidney disease. Admittedly, this was nowhere near as scary as it always sounded in TV medical dramas. I guess it was really do to her demeanor. During the whole thing, she was her usually super friendly, extra nice self, except for when she had to get shots of course.
Soooooo, now fast forward 14 months later and we have grown enough to be ready to reach the next step in treatment. There have been a few setbacks. Notably the most recent being an infection in the peritoneal cavity that created the need to remove the catheter and implant a hemo-dialysis catheter via surgery. Only for the catheter to not work and have to be replaced a few days later during another surgery and then another to ensure she could go home. Through it all she has been stellar. No matter how frustrated she gets with the process of going to dialysis 3 days a week… or having to get nightly HGH shots to help her catch up on her growth (did I mention she hates shots?) she has been the reason why we can keep our sanity. My heart goes out to those parents with children going through things that cause physical anguish to the child, because the parent feels everything that the child feels. But when your child is relatively at peace with the process, it really takes a burden off the parent’s shoulders. That is the gift she’s given us.
At this juncture, we are preparing for a kidney transplant. Hopefully sometime in the first quarter of 2019. It comes with its own set of fears and concerns of a different nature. But overall, we’re just happy to be moving in the right direction. To reflect on this four years and the patience taken to get here, these next steps will just be another moment in that process. These things really help us comprehend the meaning of the term “perfecting faith.” In the meantime. we’re extremely grateful for all the words of encouragement, prayers, donations to COTA and blessings that people have shared with us.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.