Donate to Nova's Fight for a Brighter Future

About me and why I'm here :)

My daughter goes to Fairview Elementary in Pulaski, WI. In the middle of kindergarten in 2023 there was a new student. Her name was Nova. I kept hearing about her new "best friend" Nova. Well.....I finally got to meet this "Nova" and she is the most amazing little girl. She is so polite, patient, kind and spicy with the BEST fashion sense! Enter some months later and the begging for a sleepover from both girls! I find out that Nova has some health issues she deals with and that it probably wouldn't be possible because of a feeding tube. Thankfully I have medical experience and we were able to make it happen anyway! We had the BEST time and even got to go to a Packer game! Now, I really got to know Nova and knew she had been through it but still not knowing her story. Until today......I knew Nova hadn't been at school because of something going on with her health and reached out if there was anything we could do to help. I know how hard it is to ask for help, especially when you really need it.

Here is Nova's story (but trust me....it definitely does NOT define her):

From Nova’s Mom:

I have type 1 diabetes. I was required to do more OB visits due to being high risk. My entire pregnancy I was told everything looked good, never had any idea things were wrong. They delivered Nova at 34 weeks and 1 day because of preeclampsia, but being diabetic she was a pretty good size for 34 and 1.. 5 pounds 15 ounces. She easily would’ve been a 10-pound baby if she was able to marinate longer. My OB had to forcefully pull her out, as she was stuck in my pelvis... lots of bruising on both Nova and me. She was delivered, and immediately went to NICU. When I was able to get there, after getting feeling back in my feet, they told me that some of her lab work came back abnormal. Said it could just be from the delivery and they will re-check the next day. They did, and labs were still not better. She was extremely puffy as well, wouldn’t latch, wouldn’t eat. A week in St Vincent NICU and they transported her to Children’s because they said her case is so complex that Children’s is going to be my only option. She went in an ambulance while Nate (Nova's dad) and I drove. She actually made it here before we did. We talked with the kidney team and asked them in their professional opinion, what is likely the outcome. This was after 2 weeks of trying to figure out what is wrong with her, because at this point, I’m getting frustrated. I still remember the conversation like it was yesterday, her doctor came to us and said our best options would either be put her on peritoneal dialysis, or let nature run its course. Of course, I was flabbergasted! How could you sit there and tell a mother and father that a possible option would be to let nature run its course? It was at that time that they diagnosed her with End Stage Renal Disease and said her best chance is to get dialysis until she is big enough to fit a transplanted kidney. We immediately said to do PD dialysis, without hesitation. I’m very very good with anything medical and always have been, so I was up for the challenge.

She got her PD dialysis catheter and g-tube placed on December 4th. They actually called me in the middle of surgery to get consent to place the g-tube because they said kids with ESRD don’t have great taste buds and everything tastes “brown”, so they are very unlikely to eat and drink normally. Knowing that I said to place it because fed is best in every situation.

So, after her surgery, we needed to let the catheter heal in place and then learn how to do the dialysis in order to go home. It was a week-long training, LOTS of medical supplies we needed to bring home, and even more to be delivered.

February 2nd, 2018, we were able to go home, FINALLY. She’s been born for over 3 months, and she has never been able to go home. I continued to do dialysis for her at home for 3.5 years until she was big enough for transplant. I received a call in the middle of the night, I first ignored it because I was half asleep and didn’t realize who it was until they called again. I angrily answered because I honestly thought her supply company was trying to deliver her order, at 2:00 AM. I heard the words; this is so n so from Children’s Milwaukee and we have a kidney for your daughter. I sprung out of bed so fast. Nate, in a dead sleep, said... did I just hear what I think I heard? I said YESSS!!! I rushed to grab a sterile sample of her dialysis fluid, a few changes of clothes for both of us, my insulin and whatever else I could think of half asleep at 2 in the morning. Jumped in the car, and pretty much flew down to Children’s with Nate soon to follow. It all happened so fast. If I wouldn’t have answered their 2nd phone call, they would’ve called the GBPD and had them send an officer to the house to escort us down to Children’s. Soon after we got there, she went in and I think it was 6 hours later... they brought her back to me. I was expecting her to look better, but that soon was taken from me.

I walked in the room... she’s hooked up to 9 IV lines, has an incision from her chest to her private parts, HER FRONT TEETH ARE NOW MISSING, and she is still intubated. I dropped to the floor and ugly cried for an hour! Nate managed to scrape me up off the floor and I put my mama pants on and gave her the best and most comfort I could.

She had visits from all family members, therapy dogs, nurses, doctors... we were having a party! SHE WAS FINALLY MAKING URINE ON HER OWN! Something she didn’t do much of since birth, I was over the moon. And so was dad. We stayed at the hospital for a week, and then transitioned to the Ronald McDonald house across the street for a few months in their long-term rooms. Once they said we could go home, I’ve never seen so much hustle out of both Nate and me. We get to take her home, again…..

At this point, I am a mix of emotions. Ecstatic she finally received the gift of life, but also distraught because they had told me the deceased donor was a 19-year-old male, healthy. In order for my child to receive life, a young child had to lose his. We did great for the first 2 years, no major complications. Shortly after the 2-year mark, we go into cellular rejection. I rush her down here, pump her full of IV steroids for a week, things get better and stay better for about a year. Then we hit another hurdle, and this time the rejection she has was anti-mediated rejection. Her body was trying to reject the transplanted kidney. Great! Awesome! Now what do we do?

We did a few rounds of steroids, upped her anti-rejection meds, and watched it. For a while it was good, and then her creatinine started to slowly increase with no clinical explanation as to why. Allosure (the test they do to see how happy the kidney is) was clean, no CMV or BV (2 viruses that have a potential to cause damage to the kidney), Tacro level was good. She was still creating urine and using the restroom more frequently than normal. I wouldn’t have known anything was wrong unless we did more testing. So, we did an ultrasound and it showed nothing to be concerned about. So, we were starting to think, maybe this is just her new baseline creatinine, and we’re going to have to accept it. It wasn’t until they called in urology to take a look and they said her ureter has a kink in it. We’re going to put this nephrostomy tube in to allow the kidney to relax while it tried to heal.

So, we wait a few weeks. Absolutely nobody had been in contact with me on what was going on or what the estimated time was for this tube to be placed. I finally got on them hard, telling them I need an answer TODAY or I’m filing a grievance because this is unacceptable. You put this object in my daughter and then leave me in the dark... no. Not this mama. No one had called me for weeks. After the message I had sent to her transplant care team, I talked to all 3 teams within a matter of a few hours. It was great, I was able to talk with someone but still didn’t have answers because neither did they. This isn’t something that happens often. But they wanted to try all possible outcomes before resorting to surgery to fix it. Nothing was working. They placed a stent and a balloon to hold the ureter open. Works great until they took it out and then same thing... creatinine rises.

So now our only option is surgery. We schedule surgery. She’s been out of school because she’s hooked up to a urine bag, and now we’re here. They opened her up yesterday to find that it was just scar tissue from previous rejections pushing against her ureter causing it to kink. They removed that, and everything looks stellar. Put her back together and here we are. Her labs came back this morning more elevated than yesterday, so when they do rounds, I will pick their brain some more because I’m getting nervous with her continuing elevated creatinine.

Why I'm doing this for them:

Jessica (Nova's Mom) lost her job due to having to take time off to care for Nova and hasn't been able to find anything else accommodating. She also got laid off from her night-time side job to make some extra because the owner doesn’t have any hours for her right now. So in the matter of 2 months, She lost both her sources of income due to caring for their daughter. A hospital of all places could not accommodate what she needed so they fired her. Nate’s also been only working part time due to the weather. So they've been falling behind. Not to mention the gas to get to every appointment down there, food to eat while they are there. Nova will always get food because she’s inpatient, but they don’t always get to get food. They are extremely thankful for the Ronald McDonald house, as recently they’ve become more of a “home”.

From Mom today 11/22-Something has to give, because I’m drowning with no help in sight it feels. Bills are piling up and holidays are starting Yes, we are still down here. Will be for the next few days at least. We removed her foley today and IV will come out too. She’s eating and drinking. So hopefully not much longer. Even after we leave, we have to go back twice a week for the next 2 weeks to do labs. And then if those look good, they will go back into the OR and remove her nephrostomy tube. Which is also another trip and stay down here.

We haven’t been able to catch a break for years, and just when I think it’s in sight, it gets pulled away.