Our First Diagnosis....

When Lizzie was born we had no idea that she would have any urological problems. When she was six weeks old, my sister delivered her fourth baby in Memphis, TN. Things were going so well with us, that we decided to make the trip home to meet the new addition. Thank God that we did. On the last day of our visit, Lizzie slept a little more than usual, and she didn't eat very well. She was still her sweet, happy little self, and I dismissed it as "normal baby stuff".

That evening her temperature spiked to 103.1, and we took her directly to LeBonhuer urgent care. From there we were taken by ambulance to LeBonheur Children's Hospital. At this point I was pretty scared, but the adrenaline pushed me through without much thought. When we got to the hospital, we were taken straight to a room where they began trying to place an IV. All I remember thinking is that I had never seen a such a tiny needle, and that they were going to try and put that tiny little needle into my baby's tiny little hand. How did this happen?

I wasn't really sure what to think, or even how to feel. I was trying to breastfeed between doctors and nurses running in and out, and people constantly giving me information... half of which I didn't understand. I was terrified by this point. My husband was 3 hours away, but I was so grateful to be in a well known Children's Hospital and not my small town hospital back home. I think that may have saved my baby's life.

After getting the IV in, they told me that they were going to do a spinal tap because they were concerned about an infection in her brain. Luckily my dad was with me, because I had to leave her alone, and that felt wrong, and sad, and down right scary. Of all the people in the world, dad is one of the few that can keep me calm, and keep me believing that there is a silver lining. I am not always inclined to look for it on my own. He kept me focused on the good things... her vitals were good, she was still eating fairly well.

Her spinal tap was clear, which was a good sign, but we would have to wait on test results. Next we went for chest x-rays. Talk about surreal. Here I am following this metal bed that looks like a jail cell, and inside is my brand new sweet little baby! I don't know where I am going, or what to expect... and I am all alone this time. I was the only one allowed back for the test, and this was the most difficult hour so far. The x-ray was terrible. They sat her on a tiny little bicycle seat, pulled her arms up over her head, and closed a clear plastic circle around her. She screamed like I had never heard her scream before. It was heart-wrenching. Here I am, all alone, with breastmilk soaking the front of my shirt, and hearing my baby scream in terror. How was I going to do this? It was all I could do to stand up.

We finally made it through the x-ray and were taken back to the ER. We were told that she would be put on antibiotics and fluids and we would wait on test results. We were moved to a room around 2am. We tried to rest, but how can you rest after such a night? The doctors came around early, and we were told that she had a bladder and kidney infection, an infection in her lungs and after later blood test, her blood showed infection as well. They also found a heart murmur, and put her on a heart monitor.

She was scheduled for a VCUG, to see if she had a condition called Vesicoureteral Reflux. This is a condition where urine travels from the bladder back into the kidneys. When a child gets a urinary tract infection, the infection can move from the bladder back into the kidneys if they have reflux. An infection can scar the kidneys, which can lead to kidney disease and/or renal failure. This was not our only concern, however. Her heart rate was very fast and was constantly setting off the monitors. They told us they were going to do an EKG as well to check for any heart troubles.

Luckily, the EKG came back normal, and they decided that the heart murmur was a result of the infection. Her fever had also gone down with the antibiotics, and we were able to do the VCUG. During a VCUG, they inject a radioactive die into the bladder through a catheter. If the dye moves to the kidneys, it's reflux. It is graded 1-5. I found a great site, and I will link it here shortly. This site shows what each grade looks like, and gives a great parental guide, complete with questions to ask your doctor. Lizzie had grade 5 reflux. It was also discovered that she had 3 ureters. At least now we had a diagnoses, that seemed like more than half the battle.

We talked to the doctor, and were told that grades 1-3 usually resolve on their own or are corrected with deflux injections. Grades 4&5 usually required surgery. We were told that prophylactic antibiotics (a small dose of antibiotics every day to help keep infection away) were generally effective in controlling the reflux, and that if it hadn't gotten better by age 5 they would consider surgery. We would have to see a urologist for tests every 6 months or so, but life would be back to normal soon. What a relief!

I have never been so relieved, or felt such joy. I felt like we had dodged a bullet. After 6 days in the hospital, we were released. We stayed in Memphis a few more days to be on the safe side, but soon we were home and back to normal (whatever that is!) We anticipated some stress a few years down the road, but thought we were free and clear for a while. Little did we know, but our roller coaster ride through the medical system had just begun.