Kidneys...let's get it together!

Marek came home with just 11 days in the hospital. He never required the NICU and was very healthy...especially for a preemie who arrived seven weeks early. In so many ways I feel that I do not have the right to complain about any "small" health issues as his health could be much worse. In reality, we should still be in the NICU, waiting for him to breath on his own...hoping that he will gain the weight necessary to go home.

Marek is home with us...where he belongs. He shows how he is getting stronger each day. He eats well, wakes up for feedings, and asks for more when he is hungry. He is becoming more active and becoming stronger as he tries to sit up. He has increased his ability to maintain eye contact and recognizes both Gregg and my voice.

It looks like our last real hurdle will be his kidneys.

During my pregnancy I was sent to a Maternal/Fetal specialist. At first, I was referred because he had a 2 vessel umbilical cord (instead of three) and elevated AFP results (that could mean spina bifida). At the ultrasound, they told us his heart and spine looked great, but that his kidneys were slightly dilated. They told us that this is common in boys and that the problem usually resolves itself.

October 10th I had a follow-up at the Maternal/Fetal Specialist. His left kidney looked a bit better, but his right was still swollen. Again, they reminded me that the kidneys usually correct themselves and just asked for an ultrasound once Marek was born.

Two days after Marek was born, he had an ultrasound. His left kidney was "mildly" dilated while his right kidney was "moderately" dilated. This stayed true when he received a second ultrasound before we left the hospital. This meant we needed a follow-up at the Children's Hospital and Marek was put on an antibiotic to keep away any kidney infections. The specialist had warned us that a kidney infection in an infant could mean that he would lose the kidney.

Marek had his first real outing as we traveled to the Children's Hospital in Birmingham on 11/22/11. We packed up and left around 8:30. The drive seemed to take forever, but Marek did so well! Once we arrived we first went to the urology department. They sent us for an immediate ultrasound. When we met, finally, with the urologist he told us what we did not want to hear. Although his left kidney looked great, his right kidney was more swollen. I held back tears as I feared for the doctor to tell us that Marek needed surgery.

The urologist explained that when the kidney is swollen, it can mean that there is a "blockage" leading to the bladder. To rule out a bladder problem, we were sent to have a VCUG test. This required a catheter to be inserted, dye to be pumped into his bladder, and x-rays to be taken as he urinated. I tried to keep it together as we went immediately for the test. Marek seemed unsure as to why we were getting him undressed again but as the nurses attempted to give him a catheter, we fed him so he would stay calm. Well, it took 4 people to insert the catheter!! By the end, Marek was over the experience and pretty fussy. Once the catheter was in he calmed down and we were able to have the test.

Again we went to the urology department. The urologist told us that Marek's bladder functioning looked great, so the problem is definitely in the kidney. He felt confident to hold off and not send him immediately to surgery.

We have a follow-up on January 24th. At that time, Marek will be given a test to see his kidney functioning. Normally, the kidneys each perform 50% of the work. In Marek's case, they will allow 60/40 work distribution. If his right kidney does not function at least 40%, we will need a surgery.

The urologist made the surgery sound simple. They will make an incision below his right ribs, cut out any blockage, sew everything back together, and he may be able to come home the next day. I sat there in the chair biting the inside of my mouth so I would not cry. I looked at my tiny baby and tried to imagine him having surgery...someone cutting him...and the pain he would feel without the understanding needed to realize WHY he had to be in pain.

Gregg and I were silent for the first part of the drive home. We finally approached to the topic to get some of the awkwardness out of the experience. We admitted that it was not the WORST news (we did not get sent directly to surgery), however, it was not the best news. I think both of us naively believed everything would be perfect when we came in and were saddened that Marek did not get a clean bill of health.

So, January 24, 2011 we will be back to at the Children's Hospital. We hope, and pray, that Marek's kidney corrects itself.

Our little trooper waiting for the urologist...