James' first time at church

Today was a very special day for our family. Jay, Nana (Jay's mother Harriet), James and myself went to church together for the first time.

James is on prayer lists all over the country and that is no exaggeration. We have even had phone calls from people whom we have never met, telling us that James is on their prayer list. Our special guy even made it onto the Shriner's prayer list. Talk about a support system! The least we could do was to start him early with his devotion to God.

You can read into things to make them fit your current situation, but sometimes I feel that they happen for a reason. For example, the message today was about taking that first step even though you do no know what is down the road ahead. Kind of like what we are going through with James. Sure, we know that we have many more bumps in the road , maybe even some blocks. But, that is not going to deter us from taking it step by step with a positive outlook at what lies ahead.

Speaking of what lies ahead, James goes in for a follow up VCUG (Dye x-ray test) and sonogram on Friday. Jay and I are very anxious to see the extent of James' kidney damage. We know they are not going to be normal, or probably even close to normal. But we are hopeful that there is enough good tissue left, so he does not need a transplant.




 

James with his big brother Jamison

I kept things a little light and to the point in my previous post. Mostly because I am new at blogging and partly because it is still hard for me to share all of the details about the state of James' health. Though, after sharing my advice and story, I realized that not only is this blog good for other people seeking support but it has also been therapeutic for me, making it easier to be more open about our situation. With that said, PUV is a very serious condition, and our sweet baby James has had a hard fight and continues to do so. Looking at him you would think he is the healthiest baby boy in the world. But inside his system is working hard to recover from major trauma. We weren't sure if he was going to make it home from the NICU, this was all new to us. Like I said, Jay and I are not doctors, we had a lot of questions and did not know what to expect. To be honest, we still don't know what to expect. Then again, no one knows what the next day will hold for them. Enjoy life, appreciate your loved  and keep the spirit of the Lord in heart. Only God knows what our future holds, how many more tears we have to shed and how many more smiles we have to share.



Please post your prayer request. They do not have to be PUV related. As God's servants, my family and I would be more than happy to include you in our daily prayers.



Please check back soon for a PUV update.

James with his Great Grandmom

Our Miracle Baby James And His Battle With Posterior Urethral Valves

Welcome to my blog, my name is Nicole and my husband Jay and I are the proud parents of a sweet little baby James. The purpose of this blog is to share our son's battle with kidney failure and Posterior Urethral Valves with the intentions of giving hope and support to parents going through the same journey. I am not a doctor nor a specialist on this matter. I am simply a mother sharing her story and giving back to a world that has given us so much.

Even though it is long, here is my condensed explanation of our story.

My pregnancy started out just like any normal pregnancy. I had cravings, mood swings, mixed emotions, cankles...You know, the usual good and not so good things that come along with being pregnant. That all changed during a visit to the ER for what I thought was labor (turned out to be first timer jitters.) I was 32 weeks pregnant and all of my sonograms looked normal, wonderful actually until a tech took another one at the ER. My husband Jay and I knew something was wrong when the tech said she would be right back. Everyone knows when a doctor or nurse says they will be right back, there is something not quite right. About 5 minutes later the tech came back with the doctor in charge and they asked Jay and I if we knew about our son's kidneys. Of course we had no clue there was a problem since all of his other sonograms looked so good.

We followed up with my OB and he took another sonogram to confirm that there was actually an issue and not an error with the ER sonogram. Jay and I looked at the monitor to get another sneak peak at our precious little guy and had the most terrifying shock of our lives. I was a florist and Jay is a farmer so we have no clue how to read sonograms, but when the radiologist moved the wand over James' kidneys we saw a huge black "cyst" twice the size of his right kidney. It was clear, even to us, that there was something terribly wrong.

A few minutes later Jay and I sat down with the OB to go over the report. James had a distended "Keyhole" shaped bladder and a 4CM "cyst" on his right kidney. I say "cyst" because it is just a term they used for fluid buildup, it is not an actual cyst. We were referred to the top Pediatric Urologist in Maryland and after 2 very long weeks, we met him to go over our options and the possible outcomes. Basically, we had to wait until James was full term because the instruments used in investigating the problem we too big to use on a preterm baby. Another long and emotional wait!

Proud mom and dad to be

I was scheduled for an induction on a Wednesday but James just could not wait, he decided to come out on Sunday 01/02/2011, a day late of being a New Years baby. There was a lack of communication at the hospital and James did not receive the tests and treatments he needed right away until 2 days later. Another sonogram was taken and it revealed that his other kidney was failing him and he had a creatinine level of 2.8 (.1-.59 should be the normal range for a newborn.) Finally he was transported to the University of Maryland NICU where he received all of the special care and tests he needed. By the time he was transfered his creatinine had gone up to 3.4. We are so fortunate to have such wonderful top rated hospitals in Maryland. I don't know what would have happened had James not received immediate care.

Let me tell you, the nurses and staff at the NICU are angels. There is no other way to describe them.

James in the NICU

After 2 weeks of IV fluids, medications, tests (sonograms, VCUG, and a lot of blood work) and diet changes, James went in for surgery to repair whatever was wrong with his system. The surgery took about 15 minutes and the doctor confirmed that he had Posterior Urethral Valves. PUV is a condition where there are extra flaps of skin in the urethra which cause the urine to reflux into the kidney which then causes hydronephrosis . Usually 1 kidney will take in all of the reflux to save the other kidney. James' kidney took all it could take so the other kidney suffered major damage. The condition is only seen in males. I have included a "helpful links" page where you can find a more in depth explanation. 

James chowing down

James was in the NICU for 3 weeks. He was seen by Cardiologists, Nephrologists, Urologists, Neonatalogists and the wonderful NICU nurses. They all had a feeling that James may require dialysis and kidney transplants.  Not something Jay and I wanted to hear. Having to see our little guy hooked up to all of the monitors and catheter was hard, and missing his first 3 weeks at home was even harder. Jay and I were exhausted spending all and every day at the hospital. Hearing that James may not turn out to be the healthy baby we hoped and prayed for was crushing to us. Our days were filled with tears and our hearts were hurting so badly. Yet, we remained positive and reached out to friends, family and most importantly, God. James was put on prayer lists all over the country and had hundreds of people praying for his recovery, most of whom we did not know. 

James with his Great Granddad

When James was released from the hospital his creatinine levels were 1.94. A major improvement from when he was admitted. The Urologist said he had hoped to see his levels come down to at least a 1 within a year. Well, James is almost 2 months old and his levels are .56! They are within normal range and continue to improve each day. His odds of needing a transplant have declined and he is gaining weight and looking like a normal healthy baby boy. It is truly a miracle that he has improved so much in such a short amount of time. He is not out of the woods yet but his chances of having enough kidney function are very high. James is scheduled for another sonogram and VCUG test on March 4th. I will be sure to post an update.

PUV is a lifelong condition. Even if the blockage is fixed and blood levels go down to normal, the child still has to be monitored throughout their entire life. There is no guarantee that the ureters will not continue to reflux and there is no way of telling how much good kidney tissue is left until the child is older. The good news is that so much research has gone into the condition, the chances for survival have gone up significantly. With the proper medications and diet, PUV can be easily and safely managed.

Please contact me if you have any questions about our experience. I left out a lot of little details which may be helpful to you, so feel free to ask anything at all.

Thank you for your time and interest in my story.