Mason's Story

On January 4, 2010 I couldn't hold it any longer. I had to go and I was still out on the road for work. The box of 'special sticks' were on the passenger seat, screaming at me to use one. It was early afternoon and the box clearly states that I need to use it first thing in the morning when the stream is the most potent. I couldn't wait. I ran into a random restaurant bathroom, out of urgency not excitement, and did the deed. Surely the stick would read 'Not Pregnant'. But it didn't. 'Pregnant' in a random restaurant bathroom, middle of the day, by myself. It took everything I had to stifle my squeal and leave my cell phone in my purse. My heart pounded for the rest of the afternoon. And then I took another test when I got home, just to make sure. 'Pregnant'. My husband was stunned, I was in disbelief. My parents had some difficulties with trying to conceive, adopted my older sister and brother and then surprisingly created me. There was a possibility the same could happen for me. BUT! Now time to tell the parents. My mom had just had shoulder surgery, and I knew the perfect way to cheer her up.

So begins the next chapter of our lives.

Throughout the first 20 weeks, I felt physically pretty good. Tired in the afternoons and gagged when I brushed my teeth, but overall very good. And meal time became a favorite part of the day. But then, things changed.

April 15th started with butterflies, an extra long hair and makeup session, a dress purchased specifically for this day, and photographs before leaving for the doctors office. Dolls or GI Joe? Tea parties or mudpies? Penis. When Dr. Moore (awesome OB/Gyn BTW!) walked in the room, he had a concerned smile, and in my heart of hearts, it didn't feel right. He said, "So...It's a boy! That's pretty great!.....Is there any history of kidney problems on either side?" Crash. Rock bottom. I went from feeling the highest, most euphoric high a woman can have, to the absolute lowest of the low. There was something off on the ultrasound. Black areas in the kidneys that really shouldn't be there. We were referred to a perinatal specialist and when the receptionist made the appointment with us sitting right next to her, she said to the person on the other line that we needed this appointment 'like yesterday'. The knife in my heart was twisted and shoved a little deeper. My husband held my hand and squeezed, reading my mind and facial expressions. Desperation in my eyes. Is this really happening? Tell me this is a dream. The rest of the day was full of breakdowns, hugs, words that were trying their hardest to be as reassuring as possible, and more breakdowns.

Over the next 4 months we had monthly ultrasounds, each time hoping the perinatal specialist would say that they had made a mistake, everything seems to be fine and there's nothing to worry about, but that was never said and concern was always made clear. Still fluid in the kidneys, possibly a cyst. But always the question of what is actually happening in my sweet baby's belly. We wouldn't know until he is born. Travis and I would leave the appointments analyzing voice inflections, strategically placed 'what if's' and 'could be's'. We never knew if what they were telling us indicated that our baby would have the possibility of not making it. A cloud that was always there. I focused on his kicks and hiccups and knew that they were solid and had meaning. My baby was telling me he is strong and that he would fight when he was finally in our arms. Those kicks were what gave me confidence.

July 29, 2010 - At our 35 week ultrasound we got some different information. One week had made a huge difference in amniotic fluid and the doctor wanted to see us the next day. This could be time. I asked him if that meant we should pack our bags, half joking, expecting "No, no, it's nothing like that, we just want to monitor things...." But to my surprise he said that wasn't a bad idea. Later that afternoon, Dr. Moore called and asked for us to go ahead in to labor and delivery that night. He wanted to put me on IV fluids through the night and see what happens. We couldn't believe it! Our furniture hadn't arrived yet, I hadn't even thought about what goes into a hospital bag and we still had 5 weeks! That's over a month and in gestation time that's a long time!

July 30, 2010, Friday - Throughout the night my blood pressure stayed high, and the next morning Dr. Moore made his grand entrance and informed us that we weren't going to bother with another ultrasound to check the fluids. Today was the day. Talk about high blood pressure! I cried all day, out of fear, disbelief, confusion, and venturing into the unknown of what was actually going on with our baby's kidneys. We were going to find out in a matter of hours. I knew birth plans weren't usually stuck to, but this was NOT how I anticipated things to go. I tried to be excited for our family and best friend Anna, put on a brave face, but I couldn't hold myself together. The picture to the left says it all. Agony behind a forced smile. Finally after a very long 7 hours of waiting, it was my turn in the OR. We would be parents within the hour. Sureal. Spinal block. Curtains. Nurses. Glances at my husband who through this whole ordeal was my rock. Pressure.

"Here he comes!" "HE PEED ON ME!" And with those words a wave of relief swept over me. There is at least some hope that things may not be as bad as we thought. He has the ability to pee. Cries. And then I saw the most angelic face sticking out of a bundle of blankets with that classic pink and blue beanie. More tears. But these tears had different meaning. They felt different. I am a mother, we are parents, and our baby boy is here! Mason Montgomery Beasley, 6lbs 1oz.

As most preemie, c-section babies do, he had some respiratory problems, and I didn't see him for close to 10 hours. But for the rest of the weekend we had a perfect baby. Cried like a normal baby, peed and pooped like a normal baby. Surely things can't be but so bad in his belly. Maybe he just needed to be born and release the fluid with that momentous pull from my body.

August 2, 2010, Monday - This was the moment of truth. Time for his ultrasound to take a good look in his beautiful pink belly. Bad news. His kidneys had significant amounts of fluid in them. Surgery was necessary and it would happen the next day.

The diagnosis: Vesicoureteral Reflux. Each kidney has 2 ureters (tubes) when usually there is only 1. One of the ureters was flowing into a ureterocele (separated pocket in his bladder) therefore not flowing out of his body. This made the urine constantly reflux (flow) into the kidney making it very large. This also made the other kidney reflux but not as severely. There are 5 grades of reflux 1 being the least amount, 5 being the greatest. Mason has grade 5. His entire kidney fills with fluid. This could cause scarring and lead to eventual kidney failure. It is something that has to be watched over his lifetime, with some key checkpoints.

August 3, 2010, Surgery day - They didn't have to cut, they went through his urethra and incised the ureterocele in his bladder. Things started to drain and the surgeon noticed the ureter from kidney to bladder was really enlarged because of the pocket not filtering and fluid backing up into the kidney. We were really fortunate that we knew there was something to be checked and that Richmond has a really good pediatric urologist (there are only about 300 in the whole country, and a group of just 3 in Richmond).

After surgery, he had a really bad respiratory problem. Couldn't breathe, sounded awful and I hope none of you will ever have to listen to the sounds we heard for the next 4 days or so. It came from the tube aggrivating his little throat because it was potentially too large of a tube, on top of him being 5 weeks early. His creatinine level, checked by a blood test, which shows how well a kidney is functioning was 3.0 at the time of surgery. A normal infant's level is 0.3. Had we not known to anticipate this problem, he was headed to kidney failure.

We had switched hospitals for the surgery to be done and because he had been released from one hospital, he couldn't be admitted into the NICU. So he recovered in the PICU and we stayed by his crib practically 24/7, only leaving to take a shower and grab some quick food. Even that was done separately so one of us would be there with him. Over the next 10 days, he went through a lot. I started typing all the details of his recovery, but changed my mind. He had a hard time. We had a hard time. The creatinine level came down each day and eventually got below 1.0. We got to feed him again, after about 9 days of no food and IV only, and focused on getting some weight back on him. He had dropped from 6lb 1oz to 4lb 13oz. I had been pumping breastmilk the whole time that he was not allowed food and created a nice supply. It was the only thing that was constant. I knew I had to pump every 2 hours because if he was able to, that's about how often he would nurse. It gave me the faintest hint of being a normal new mother. As soon as he started taking my milk he improved even faster. (Soap Box: I cannot stress enough the benefits of breastfeeding for a baby, and if that doesn't work, pump. It is a baby's best source of nutrition, period.) Once he showed some weight gain, 5lb 1oz, we were able to take him home. We were finally a family of three.

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That is the first 2 weeks of Mason's life. A lot to take in all at once. A lot to revisit for me all at once. We are preparing for the next major step in conquering this problem, which instigated this blog. Mason's Story to continue in the next post.