Help Niko (our little ARPKD warrior) & family ❤️

After 7 years of trying to conceive we got our big fat positive on November 2nd, 2021. Finally our prayers had been answers after years of fertility issues.

the first half our pregnancy went relatively well. Yes, I do have diabetes but baby was thriving and I was okay. So I considered that a win.

Around 25 weeks I started bleeding, not knowing if it was my urine or baby I went to the hospital. We found out I had a pretty bad kidney infection but that wasn't the worst part of the visit.

The doctor saw I had Oligohydramnios, an extreme lack of amniotic fluid around baby.

Worried that I was PPROM, I was given a fancy helicopter ride to a better hospital. And admitted for for about 12 days. Thankfully I was not PPROM- and was able to go home while continuing to be monitored twice a week from my MFM.

Over the weeks, my fluid level would go back and forth, up and down but never going over 3 centimeters. I was being tested for every possible reason for the lack of fluid- without answer.

And over time we started to have a little more hope until the appointment where we were told that our son had 'echogenic' kidneys (meaning they were showing up brighter on ultrasound.) This alerted my MFM that there may be renal failure or diseases of some kind causing the lack of fluid.

This is when he decides to run a genetic horizon 274 test which would check for 274 diseases or genetic mutation that I may have. After two weeks it came back, I was a carrier of Autosomal Recessive Polycystic Kidney Disease. Not good.

So it was time to test James; if he was a carrier as well we would mostly have our answer. And two weeks later we received his results. And unfortunately he was a carrier for ARPKD as well.

ARPKD is normally fatal in newborn babies. It's like a more extreme case of Polycystic Kidney Disease PKD.

The issue with this disease is we won't know the extent of everything until he is born. While yes they are worried about his kidneys- it's actually his LUNGS that we are worried about.

Babies need amniotic fluid for their lungs to develop. So Niko could be born with lungs that just can't be helped no matter what they do.

In the case where he can breath, now we worry about his kidneys. We are looking at a long hard road ahead to maintain kidney function. It could be months before he is big enough to come home on a dialysis machine. Especially since our hospital is 3 hours away from our home.

This is where we are asking for the help from our friends, family and everyone in between. We definitely will be needing some type of financial help here.This will help us with short term living expenses, gas, and medical bills.

We also are hoping to get a better vehicle that will be more reliable and accommodating to our situation. 

And also our other son Noah can't be with us in the Hospital most of the time. So we would like to be able to pay anyone who helps us provide care for him.

if you find it in your heart to help us- just know it means more to us than anyone could understand. Being able to focus all our energy on our son is our main priority and we are hoping that money will be a small concern but as you all know today with gas prices, food prices and everything else. It's going to be hard.