Beautiful Day

My posts are here to help others which means I often share the hard times but this morning, I felt like sharing

Daddy's new tractor

something happy and special. Jay is a farmer which means he is up early and home late. Therefore the few minutes we spend together as a family are very precious to me. As I watched Jay show James some new dance moves this morning, I realized that it is so hard to imagine what life was like before James came along. Of course Jay and I had a wonderful marriage before James but now we have a wonderful family. How special I feel to be the proud wife of a wonderful husband and the proud mother of a happy and strong baby boy. Do I want James to be in perfect health? Of course! But would I trade him in for another baby? NO WAY! 

When times get hard, dance your troubles away!

James is a special needs baby because he requires a lot of medical treatment and prevention but I have a secret for you...I am spoiled! Not to brag but James is the perfect baby, he is funny, cuddly and he only fusses when he is hungry. He never whines just to whine, he is never in a bad mood and he loves, I mean LOVES being around people. Just last Sunday at Gigi's, James was passed from aunt to aunt, cousin to cousin and of course Gamma to Gigi. He was in heaven, especially since he has a thing for the ladies. Let me tell you, he was batting his eyelashes, making googly eyes, showing off his dimples (the ones on his face) and blew raspberries like no one's business. He also got to meet his Aunt Brittany for the second time and I think it was love at first sight. James tried to mesmerize her with his smiles so she would not leave. 

Big Brother 

Bath Time!

By the way, James has recently figured out what those big white fluffy things that hang out in the bathtub are. He decided to see what happens when you pull that long furry thing that wags and wiggles. Jamison (the cat) is definitely not looking forward to the terrible twos. 

Jamison and Bailey

Baby James Has Had Enough!

Two Sundays ago I awoke to a horrid scene. Our precious James was not himself. He was pale as a ghost, grunting in pain and burning up with a temperature. At 10PM that night, Jay and I packed James up and rushed to the emergency room. We both knew something was wrong.

While waiting to see the ER Doctor, I changed James' diaper and to my surprise there was a tinge of blood in his urine. That prompted me to ask the doctor for a urine culture because having a baby with PUV means they are more at risk for urinary tract and kidney infections. After an examination and a heartbreaking catheter culture, the doctor released James with a prescription for antibiotics and told us to follow up with the Nephrologist that morning (at this point it was 4:30AM).

We drove home and caught about an hour of sleep then went to Baltimore to see the Nephrologist. The exam seemed to be going well. James is up to 15lbs, 25 inches and on the outside looks like your average healthy baby boy. Everything went well until the doctor checked James' heart rate. The look on her face told us things were worse than we thought. She excused herself and called James' pediatrician. By now Jay and I are tired, physically and emotionally tired. More bad news is not what we were prepared for.

Apparently James' grunting and tachycardia worried the doctors so we were sent down to the Pediatric ER. James had x-rays to rule out pneumonia and heart/lung problems, another catheter culture and a slew of blood work. The x-rays were fine but the urine showed infection as did the blood work. James also had a temp of 102.5 and his heart rate was around 202 bpm. The poor little guy was miserable, to look at him was like looking at another baby. He didn't look or act like our baby boy. To be honest, I felt like we were going to lose him. It is overwhelming having a baby with such severe health problems, all we want is to see him happy and healthy.

An infection we can deal with, as long as it isn't a kidney infection. I change his diapers even when they aren't wet just to avoid the possibility of a kidney infection. If James kidneys scar even more, he would most likely need a transplant. Transplants don't last long, maybe 10 years if you take meticulous care of them. Another round of doctors came in the speak with us and said that James was going to be admitted into the Pediatric unit. We weren't expecting that and let me tell you, any fears we had before were multiplied by a thousand, make that a million.

Just so I don't make this too long, I will condense the rest. Come to find out, James had a kidney infection. He was released Wednesday afternoon and was back to his old self. Flirting with the nurses, dancing up a storm and eating all he could. James' special nurse from the NICU even came to visit. The doctors think that James still has urine reflux so he will be tested again in May to see if the previous test in March was wrong. Until then he will continue taking antibiotics and I will continue to give him extra kisses.

On a brighter note, James has started solid foods. He loves sweet potatoes but carrots he could live without.

Please feel free to email me if you would like the full story of James' stay in the hospital. And if you don't mind, please say a little prayer for our sweet little guy, he has suffered enough.
Thank you and as always God Bless.

From the NICU to the pageants!

While sitting in the NICU all day with baby James, never did I imagine he would ever get the chance to compete in a baby pageant. Well, this past Saturday, Gamma (Grandma) and I put a suit on our little guy, packed him up and took him to his first pageant.

How did he do? Take a look for yourself...

He won best hair, best attire and was 2nd runner up in the main competition. Our baby boy is on his way to the Mid-Atlantic finals!

Jay and I have not decided if we are going to actually enter him in the next pageant as it is very expensive and well, we don't want it to go to his head. Next thing you know he will be bossing us around and demanding we get his onesies from Macy's instead of Wal-Mart. Plus it takes a lot out of a guy.

The down side of pageantry  =)

You could say that Baby James is still feeling well and to the best of our knowledge he is still recovering more and more each day. James has an appointment on the 18th so please send extra prayers for normal kidney function levels. And while you are sending prayers his way, please include my Aunt Katie, Uncle Keith and my cousins Sharon, Sara and Stephanie. They had a barn fire and lost several animals, farm equipment and most sadly all of Stephanie's personal belongings. This is a very sad and tragic time and they need all of the love and prayers you can send their way. Thank you.

Be sure to check back after the 18th for an update of James' levels. And Blessings and Prayers to all.

Latest Lab Results

Baby James had his 1 month follow up with the nephrologist on Monday. For Jay and I, it is a whirlwind of emotions. Several days before James' appointments, we start to get anxious, impatient and let's just say our nails become nonexistent from all of the biting. The prayers kick in overtime and we enjoy each minute with James a little more because we do not know what is around the corner.

Our big boy

The nephrologist was amazed to see how much weight James has gained. He went from a birth weight of 7.7lbs to 4lbs and now he is a whopping 12lbs. He is definitely not spindly! James has also grown just about 3 inches. It looks like he may have a good shot at being tall like his daddy.



At James' last checkup his creatinine was .56  which usually would fall under the normal category. Now that has all changed this a new medical report as of last month now states he should be under .3. Jay and I aren't doctors, but we do not see how he can be within the normal range and then be considered in the high range just because of a new chart. It reminds me of the morning news when they tell you that eggs are good for you one day and then say they are bad for you the next.

James napping with daddy

The good news is that if James' levels go down to .3 or below, he can get off of all of his medications and special formula. The thought of James living more and more like a healthy baby really brought joy to our hearts. No more yucky tasting medicine, no more worries of how we are going to find his special formula, no more reminders of his damaged kidneys. Jay and I were sure James would be under .3. There was no way he wouldn't be. Especially because his levels were dropping so quickly.

Jame's blood was drawn and then the wait began. It was going to be a long 24 hours.

Before we left the hospital, Jay took James up to the NICU to visit the nurses. During their visit, Jay heard of a young woman who is expecting her own little bundle of love with PUV. She was visiting the NICU so she could find out what to expect when her little guy is born. I wish I had met the mother to be but Jay did give the nurse the address to the blog to give to the young woman so she could read about our story. If you are reading this, I have one bit of advice for you. Something I wish I had listened to when I was pregnant with James, enjoy your pregnancy. Never did I think I would miss being pregnant. Don't get me wrong, I am much happier being able to hold my baby boy in my arms. But, pregnancy is amazing and I wish I had set some of my worries aside. Especially during my baby shower which was 2 weeks after we found out about James's condition. I felt guilty if I enjoyed even the simplest of things like a good meal, a hardy laugh and even the company of my wonderful family. I had no reason to feel guilty, James' condition was not from anything I did and there was nothing that could be done until he was born. Just kick your feet up, enjoy the amazing changes you are going through and bond as much as possible with your little guy until he gets here.



Lazy Sunday afternoon

Now to the part I am sure you were waiting for, James' lab results. Like I said, Jay and I were positive James would be under .3. We were ready to take him off of all of his medications, I was already doing research on a good formula to supplement with. The nephrologist called with the good and not so good news. The good news is that James' creatinine was down to .46. The bad news obviously was that it was below .3 which meant he has to continue with his shots and medication. However, with his levels being so low, he is now closer to the 70% of PUV babies who will not need a transplant. That is HUGE since he was closer to being in the 5% of babies needing a transplant. Hopefully within a month, James' levels will be low enough so he can get off of his medications. That is good enough for now because taking a few medications is nothing compared to going through a transplant. We feel so blessed and fortunate to have such a wonderful little guy in our lives.

We can really tell that James is feeling better. He is smiling and dancing and is starting to take on this larger than life personality. He also looks like a totally different baby. Looking back he was somewhat sickly looking before even though compared to the other NICU babies he was large and healthy looking.

Jay and I often ask ourselves if life even existed before James was born because it feels like he has always been with us. We are without a doubt, one happy little family!

Our wonderful family

James' Big Day - His Sonogram and VCUG Test

 

Yesterday was the day we have all been anxiously waiting for, James had his sonogram and VCUG. Everything went well, and out little guy was a trooper. He sure is a wonderful baby! After the tests we went up to the NICU to see his favorite nurse, Laura. She was shocked to see how good (and chunky) James looks.

All of the nurses were angels in the NICU, but nurse Laura had a special bond with James. She was the first woman he tried to smooch at the young age of 2 weeks old. Plus she always made me feel very comfortable during my daily visits and encouraged me to do as many motherly duties as I could. We will be sure to keep all of the nurses updated with James' progress since they all played a huge role in his recovery.

After our visit, we went to see the surgeon. Jay and I weren't expecting the worst nor the best. We thought James was right in the middle with his recovery even though of course we always pray for the best. We waited anxiously in the waiting room trying to conjure up as much small talk as possible to help pass the time. Finally, we went back into the room and about 10 loooong minutes later the surgeon came in and said "There is my miracle baby". What wonderful words to our ears! Then the surgeon told us that he had to look at his records twice to make sure he had the right patient.

The reflux is gone, and Jame's bladder is able to void properly without refluxing into the kidneys. That is a huge deal since he was a grade 5 which on a scale of 1-5 is the worst. The pediatrician said usually patients don't recover from a grade 5, it is severe and a second surgery is normally required. The kidneys looked good with no further damage and one has decreased in size which means that a lot of the fluid has flushed out. After all of the wonderful news, I asked the surgeon if that meant that James would no longer need a kidney transplant. He told us that one bit of really good news doesn't eliminate all of the prior bad news. However, if James was his little guy, his anxiety level would go down knowing that everything looks so good. We go back in 3 months for another sonogram...I pray to Lord that everything continues to improve because I do not want my sweet little guy to go through so many transplants. 

After our trip to the hospital, James and I went to visit Nana and PopPop. We always have a good time during our visits. James even put on a show with giggles and smiles for PopPop.

It has been a very long two months.

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.