I stared at the pregnancy test on the counter, watching the line of urine move across the test. As it moved across the control line, it turned pink. Then it moved across the determination line. It turned pink. I was pregnant.

I had mixed emotions. I had a miscarriage just a month earlier. And since then, my grandmother had passed away. My husband and I were not trying for a baby, but my birth control failed. We discussed it and then we began to feel excited. After so much loss, it was exciting to be faced with life.

We decided to have a fetal DNA test to check for abnormalities. It came back positive, so we had an amniocentesis. That test showed that our baby might have a genetic defect that would result in a high probability of him dying shortly after birth.

The results were sent to a lab for further investigation and we had another ultrasound to follow up. We learned that our baby, a little boy, did not have the defect, but he did only have one kidney. We had many, many follow up appointments to monitor him. They also marked him as being small, however we believed that the initial dating ultrasound was incorrect.

At 37 weeks, the doctors scheduled me to be induced. The delivery went fairly well, with him arriving after a single “practice push”. He was small, just over 5 pounds. We named him Zavier. The doctors took him for his initial evaluation and realized he was only 35 weeks. My husband and I had been correct about his ultrasound dating.

He was admitted to the NICU, where it was discovered that his single kidney was covered in cysts. He started taking medicine and spent 2 weeks at the NICU, going through a feeding tube inserted, decreased bilirubin, a plan with a nephrology team where we discussed his need for a future kidney transplant.

Zavier is now 7 years old, turning 8 in just a few months. Since his initial diagnosis, he has received a kidney at age 2, from my amazing cousin. He also got a feeding tube surgically implanted in his stomach at 11 months old. His latest lifetime diagnosis was non-verbal autism.

It has not been easy at all, but it has been worth it. Taking care of Zavier is a full time job, but so is taking care of our other 4 kids. I decided to create this blog to share the adventures that our family has been through since Zavier entered our lives.

We’ve learned to cherish the importance of the little moments. The first time Zavier ate a biscuit, we shared a video with our extended family. We all cried. When he tries to blow out candles on his sibling’s birthday cakes and our singing breaks up into a series of giggles.

It’s hard. Repairing the holes in the wall from when he got put on prednisone and developed “roid rage”. Spending weeks in the hospital when he got Norovirus and when he developed PTLD. It’s a constant journey, but one that I feel blessed to be on.