John

Parent's Names: Cathy and Gary
Child's Name: John
Child's Date of Birth: 5/8/2007
Email: gary1craig@yahoo.com
Location: San Jose, California
Diagnosis: PUVs, grade V VUR, megaureters, dysfunctional bladder, dysplastic right kidney, stage 4 KD, GERD

Story:

I decided not to have the regular 16 week ultrasound as I was particularly stressed at the time. This was my 6th baby, my husband was out of work AND my father was dying. I didn't think I could handle the stress if there was a problem with the baby. So I hoped for the best and everything seemed to be okay. 3 days late, on May 8, 2007, I went into labor and was so excited to be off to the hospital to finally meet my little one, to hold him and nurse him. Labor was easy but my water did not break until I was pushing. When John was born he had a huge belly and was not breathing. The nurses acted fast placing him on the warming table, calling the doctor, stimulating him and bagging him. John was not responding and his heart rate started to go down. It was surreal. Finally after 4 1/2 minutes he took a breath and they rushed him off to the nursery where he was put under an oxygen cube. I cried and I prayed and called everyone on my contact list asking them to send up prayers for John. Hours later the transport team came and prepared him to be transported just 40 minutes away at Santa Clara Kaiser where they had a level 3 nursery. The team wheeled him in and he did not look good, kind of grayish. The doctor said he was in critical condition and that he might not make the bumpy ambulance ride.

At Santa Clara Kaiser, John was hooked up to an occillator and was on all kinds of medications. He had 3 nurses. They told me he had 2 hypoplastic lungs and kidney issues. Prognosis - he had 2-5 days to live. I stayed at the hospital for 2 days and then went home without my baby. The doc called us a couple of times telling us to come in NOW. They didn't think he was going to make it. At 8 days, the doctor said that he had elevated CO2 and that he had the occillator turned up very high to try to vent the CO2. He was in severe danger of getting a popped lung and they didn't think he could survive that. The doc told us he would most likely have a bad brain, bad lungs and bad kidneys and they couldn't really justify poking him and putting him through all of these procedures. When we arrived at the hospital the doctor suggested unhooking him from the breathing machine. My husband and I did not want to do that. We went to sleep for an hour as it was 5 AM and when I awoke, I exclaimed, "Honey send out prayer requests!" We did... and a few hours later we went back in to see John. His CO2 was down and his urine output had doubled. He made it through! The nurses called him a miracle baby because they all believed he was going to die.

From then on John improved little by little. A nephrostomy tube was in place to drain his kidney and after they performed the VCUG, he also had a catheter. There were several obstacles that John needed to overcome: severe edema, jaundice, yeast infection, UTI, a popped lung and GERD. I finally got to hold my baby after one month and jubilantly brought him home when he was 2 1/2 months old. However he had severe GERD so we ended up back in the hospital 3 days later and stayed another 18 days while the docs tried to figure out why he was throwing up. We left with an NG tube and he was fed continuously for 20 hours from a feeding pump. He threw up every couple of hours all night long for the first year. Wow talk about sleep deprived!

John still throws up at least once a day and is not that interested in food. I have come to realize he needs electrolyte replacement and a lot of water. He is fed through a g-tube, needs to be cathed daily and has a catheter at night. John has one non-functional kidney and the other is about 20% functioning. We are treating his constipation and this seems to help his bladder function better. Although he is small for his age, he does all the things a two year old does. He loves his 5 siblings and loves to make us laugh.

It has been very challenging but I have come to accept these challenges. God has provided for all of our needs and has given me strength to care for John's special needs. I have great hope that somehow in the big picture God is working all these things for good and for His glory. I look forward to the special plans that He has in store for this miracle baby.