My Big Boy is turning 4

I cannot believe that this boy is turning 4. He is so amazing and is a joy beyond words. Sometimes I get upset at myself for not know how sick he truly was when he was born, but then I think about that more and realize how inspiring it is to know and see how sick he really was and to see what he has become today.


Let me tell you about my amazing kidney baby and if you have heard this story before, sorry but this is my blog and I will tell it again and again. My Joshua Kayden was born on a Wednesday evening after 5 p.m. I had gone into labor that morning. I got up and got ready for my doctor appointment and was watching my friend Carrie's kids until I had to leave for the appointment. I had been having back pain and was really uncomfortable and I decided to take her kids over to the arranged babysitter a little early so that I could get to my doctor appointment a little earlier. Me and Lexi headed up to meet Josh at his work because I had called him and told him that I thought I was in labor and we were going to meet so that he could drive the rest of the way up there. I drove myself Saratoga Springs up to Murray while I was in labor and having contractions. I look back and realize I was so stupid to have done that, but I had no other choice. We met Josh and headed to the doctor where the nurse checked me and said yep I was in labor and headed to the hospital. I got to the hospital, they hooked me up to the I.V for fluids (I don't remember ever receiving any pitocin with Kayden) and then arranged for the anesthesiologist to come in for the epidural. After 5 hours I had a baby. He didn't cry at first but then he did and it was wonderful. He was my smallest baby weighing in at 6 lbs.



When we were ready to leave the hospital they said that he had lost some weight, about 11% of his body weight, and they wanted me to go to his doctor on Monday for a weight check. He also was jaundiced and he needed to get his heel pricked everyday until the levels went down. We followed their orders and did what we were told. When we went in on Monday to the doctors he still had not gained any weight and so we were told to come back in two days. I met with a Lactation specialist to make sure that I was nursing correctly and was also informed to keep track of his wet diapers and his poopy diapers and how much he was eating at each feeding. I did this and then went in for our next weight check and he still had not gained any weight. In fact he got down to 5lbs 6 oz which is over a pound from his birthweight. We decided to supplement with a bottle to see if that was any different, but that poor little boy would not eat for more than 10 minutes. But he was peeing through a ton of diapers. The decided to run some blood work because he had not gotten up to birthweight at his 2 week visit. That is when we found the problem. His labs were really crazy and they ordered more labs to be drawn. After the second set of labs were drawn it was decided that they needed to admit him into the hospital for failure to thrive because his levels were just all crazy. He was admitted at American Fork hospital where a kidney ultrasound was performed. That is where they found that he had really small kidneys. We were then transferred to Primary Childrens where we would meet with his new nephrologists, Dr. Raoul Nelson (who we love). These would be the doctors that would follow him until he turns 18.


Dr. Nelson then explained what was wrong with my baby. He had Hypoplastic Kidneys. Meaning his kidney were small and they would never grow. His kidneys had stopped growing while in Utero, probably around week 21 which is about when they do your first ultrasound. This ultrasound looked normal but little did we know that his kidneys were not growing. His kidneys were only 2 cm long and normal newborns are 5 cm long. His kidneys were actually failing at the time he was in PCMC, but once we got him hydrated and got him eating better, his kidneys started to work again but not to the extent that they needed to be. He did not need dialysis and his doctors goals were to help him grow and develop until the time came that his kidneys stopped working and that he would need a transplant. It was never that he MAY need a transplant it was always he WILL need a transplant.


I pumped for 6 weeks because we needed to know how much he was eating at all times, but after 6 weeks I got mastitis twice and I was done. We decided to switch him over to the formula called Similac PM 60/40 it is a special kidney formula. Feeding this little boy took forever. He would eat an ounce every hour and it was better if his formula was cold and not warm. I later found out that most kidney patients do not like hot food they like their food cold since it is easier on their stomach. When he was 3 months old we decided that it was time for an NG tube. At 6 months of age it was time for a G tube and then at 9 months of age it was time for a GJ because he was throwing up too much and his development was being affected. He was not even on the growth chart.


He has gone through so much:

• He has been on 10 different medications at one time and has had to take them numerous times a day.



• I have had to administer growth hormone injections and Epogen injections (those hurt him so bad and I remember the last time I had to give them to him I cried so hard).



• He has undergone a g-tube surgery, getting tubes and having his adenoids removed



• Had his button yanked out of his stomach so that we could put in a GJ tube



• Having his GJ tube changed every other month and being hooked up to his feeding pump 24 hours a day



• Numerous hospital stays due to dehydration. Even though he was on a feeding pump 24 hours a day, I knew that he when he was dehydrated and when it was time to go to the hospital



• Not being able to put weight on his legs because his it would literally cause him pain



• Being put in a stander to help him gain muscle in his legs



• Throwing up to the point he was throwing up blood



• Getting a hiatal hernia due to his throwing up



• Having a Nissen Surgery to repair the hernia



• Not being able to walk until he was 2 years old and then on Halloween deciding it was time to walk



• Learning to walk two weeks prior to being transplanted



• He has had to be poked for blood draws from the time he was 3 days old and they have never stopped. They have become further between them, but this is something he will have to deal with for the rest of his life.



• Being hooked up to a feeding pump every day since he was 3 months old.



• Having to pee in a bag or have a catheter put in once a month so that we could collect a urine sample to check for infections



• Has had walking pneumonia and viral pneumonia and he has had mastoiditis and had to have a PICC line to receive IV antibiotics for 21 days.



• Has had to have way to many IV's and whenever I have to get an IV I just think of him and if he can get through it so can I.



• And last but not least I am sure.....Received a life saving organ transplant on November 14, 2006 at the University of Utah Hospital.

He is such an amazing kid and has had so many trials. I am sure that he will have many more trials in his life and I know that he will get through them with flying colors. I think about that sick little boy and then I look at what he is today and I just weep with happiness that Heavenly Father has blessed our lives so much through him.

Stay tuned pictures will be coming soon.