Thursday, April 16, 2009

Ethan's Story

My pregnacy with Ethan was great! I never, ever, suspected anything could be wrong. I felt great....never got sick. Not even once. I was gaining weight on track, felt good and even had energy to exercise!

December 1, 2008 was the big day! This was the day we were scheduled to have our anatomy scan and try to find out if we were having a little boy or a girl. We were so, so excited. Jackson came with us to the ultrasound and he even got to see his little brother on the screen (tv as he called it.) The ultrasound itself went pretty good. As I look back at it, I remember now how the tech. took quite a bit of time on the stomach area. I'd know why later.

A week passed and I was still thinking all was well. Then, came my regular OB appointment on December 8, 2008. I went in and the first thing Dr. M said to me is, "feeling ok?" "yeah, sure am!" I said. It was then Dr M. told me that it looked like my baby had a multicystic kidney on his left side. The good news? The right side appeared to be normal, but there would need to be more tests done. Cystic kidneys can be a marker for chrosomal disorders. He was going to set up an appointment with a perinatologist (baby specialist) in Little Rock where there could be more tests done to see what this was all about.

I remember thinking to myself, "ok, so a person can live with just one kidney, right?" I held it together in the Drs office. But as soon as I get to the elevator I call Richard. "Dr M. says the baby has a kidney problem and there will have to be more tests done." I tried to be brave....I tried. A person only wants to hear that their baby is PERFECT in every way. But the truth is, not every baby is perfect.

What would this mean for my baby? Would he die? Would he urinate? Would he have a big left side where his kidney was dialted? All of these thoughts raced through my mind. I got out in the car and the tears flowed. They flowed hard and fast. What's going to happen now? I racked my brain, trying to think of what I might have done to cause this. Did I take some kind of medicine? Did I eat a wrong food? I was, of course, trying to make sense of it all when in fact, it was just a fluke of nature. Just they way God wanted Ethan to be made.

So, then my next call was to my best friend, Leah. Now, Leah happens to be a nurse for my pediatrician. So, she told the Dr. the news and asked his advice. It could be multicystic kidney, or could be hydronephrosis (urine reflux). It could be a lot of things....too early to tell just yet. That was pretty much the story. The big story, baby had a potentially lethal problem and the waiting was killing me!

January 20, 2009: My first appointment with Dr. W., the perinatologist at Little Rock. During this initial visit, there was a bunch of looking and discussing going on in the room. At one point, I heard the Drs/techs. say something about a duplicate system, but then another view ruled that out. The diagnosis: Yes, the baby does have something wrong with the left kidney. It IS dialated and the left kidney IS larger than what it should be.'s still too early to tell exactly what's going on.

More waiting....

January 23, 2009: Another follow up ultrasound appointment with Dr. M. I was now at 28 weeks and maybe we could see something more now. Nothing new. Kidney still dilated and much larger than normal. Right kidney still looked GREAT!

February 12, 2009: I went to a prayer group that I was invited to so they could pray over me and Ethan. I willingly went. I needed all the prayers I could get. The prayer group made this sweet prayer cloth for Ethan and I wore it faithfully. Tucked into my pants, as close to Ethan as I could physically get it. I prayed and cried and prayed some more. I NEEDED my baby to be ok. After this prayer group, I had a sense of peace about the whole situation. I felt OK. I felt OK.  I remember lying in bed that night crying and then, it was like this peace came over me and I remember saying to myself (or God), "So, this is what it's like when you take away the worry? THANK YOU!" I needed to rest. I needed to put it all in God's hands. It is what it is and I knew God HAD this. He had it. It was the next day and my mom told me about an experience my dad had that night.  Dad said he got up after he went to bed and had this unexplainable urge to tell Mom that he was supposed to tell her that Ethan would be ok. He would be ok. This made my mind rest easier too.

March 4, 2009: Another ultrasound in Little Rock. This time, a little more could be seen. Duplicate collecting system was mentioned again. Right kidney still looked great. Dr. W gave us a 25% chance of the right kidney developing cysts as well. If this were to happen, it would be lethal for the baby. I mean, a person can't live without a kidney! My BABY could die. No, this isn't right. A 25% chance that the baby could develop other cysts but that means that there was a 75% chance that the problem would stay unilateral.

March 26, 2009: Another appt. at Little Rock. I'm now at 37 weeks. It was decided at this appointment that I could deliver at Fort Smith. Up until this time, it was unknown whether I would deliver at Ft Smith or Little Rock close to Arkansas Children's Hospital. I was so very relieved when they said I could deliver at Ft. Smith since they had a NICU there too, if needed. Left kidney still very dilated but amniotic fluid level still looked good.

April 16, 2009: Ethan was born in 3.5 hours from start to finish! It was a good birth and as soon as he was born, he was sent down for tests and it was finally determined that he DOES have a duplicate collecting system. This means that he has two ureters instead of one from his kidney to his bladder and one of those ureters ends in a dilated ureterocele inside his bladder, which would require surgery at some point in the future.

June 8-9, 2009: Ethan had his tests done at Children's hospital. He had a regular ultrasound, a VCUG test to look for urine reflux and a nuclear kidney function test, which lasted for 1 hour and thankfully Ethan slept through most of it. His kidney funciton test revelaed that he had lost about 15% of his kidney function on his left side. This was good news! The ureterocle inside his bladder would need to be incised to help with the urine reflux. Surgery was set.

June 25, 2009: Ethan had his cystoscopy to incise his ureterocele. At first, we were told to expect at least one night in the hospital since he was less than 3 months old. But, after he woke up from surgery, and they saw him eat just a bit and wet one diaper, they sent us home. This was a Thursday. By Saturday morning, he just wasn't getting any better. He wasn't nursing normally, he was urinating normally, he was screaming when he urinated. My gut told me something was wrong.

Emergency room here we come! We were admitted. He was cathed. Frantic Dr. calls were made between his pediatrician and Dr R who did the surgery just a few days before. Ethan's blood pressure was extrememly elevated and his levels were up....his kidneys weren't going their job. He hadn't urinated in about 9 hours and he wasn't even close to eating anything. It was decided to transport us back down to Children's where it all started.

We got checked into Children's around 11pm and a battery of tests were started. Richard arrived around 1am. I had never made the trip from Ft Smith to Little Rock so fast in my life. I was thankful for FAST!  It was decide that after the surgery, the ureterocele slipped down into his prostate where it created a sort of "curtain" not allowing Ethan to urinate properly. His catheter was left in place and we were discharged for home on July1.

July 5 was the big test. This was the date that the catheter was to be taken out. IF Ethan urinated on his own, then GREAT! If not, then a new procedure would have to take place. One that I DID NOT want to have happen. It worked! The cath. therapy worked! His bladder and kidneys were given time to rest and it worked! He was urinating on his own and back to his usual, happy self! PRAISE GOD!

July 6, 2009: Another ultrasound in Fort Smith to see exactly where the ureterocele was located now. It was beginning to collapse up against the bladder wall, just as it should be. Looks good!

August 4, 2009: Another ultrasound and all looks good. Ureterocele is collapsed up against the bladder wall, just as it should be. Right kidney still looks good!

November 17, 2009: Another ultrasound. Left upper pole of the left kidney appears dysplastic and shriveled...a sign it is dead. Dr R is retiring and another ped. urologist will be taking over Ethan's case. He doesn't have to come back until April for comparision tests and surgery to take out that upper "stump" of his left kidney will be decided about then....depending on what the tests show.