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.