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What My Name Means:
Joseph: Hebrew, Biblical, God Will Increase
Anthony: Latin, Worthy of Praise; Greek, Flourishing
We have created a journal of our thoughts and emotions of our journey so far. We have added some of our favorite links and pictures down below, so take a look. Don't forget to sign JoJo's guestbook and let us know that you stopped by.
Hello, as everyone knows, Our Little Angel was born on October 4th, 2004 at Evans Army Hospital, Colorado Springs, CO. He passed away on October 13th, 2004 at Memorial Hospital. We got to spend 9 precious days with him and make a lifetime full of memories. He was laid to rest in Tacoma, WA on October 20th, 2004 at New Tacoma Cemetery in Lullaby Land. We would like to thank everyone for their thoughts, prayers, and kindness. We couldn't have made it through the most difficult time of our lives without you.
I don't even know where to start, the day that JoJo was born is such a blur. Joey, Randi, and Mom would probably be able to help with more of the details, but I will try my best. I went into labor on October 3rd, 2004. It was mild at first, mom and I even went shopping at Walmart. It started getting worse around dinner time so we went to the hospital. They hooked us up to the monitors, but the nurse said that she didn't think that it was time. She said they already had alot of 1st time moms. So off we went back home. A couple of hours later we went back to the hospital for good. We ended up getting a great doctor. My water broke and she put us in one of the labor and delivery rooms. I ended up getting the epidural and tried to sleep on and off that night. Joey and Randi tried to get some sleep in the waiting room, while mom tried to sleep in the room with me. JoJo's heart kept skipping beats and it was scaring us. The nurse said that it wasn't a big deal so they shut the monitor sound off so we could get some sleep. At around 6CM they gave me some pitocin to speed up the process. Not to long after that a bunch of people rushed into the room looking at all of the monitors, talking amongst themselves, and examing me, JoJo wasn't doing very well. We didn't know what was going on, except that his heart wasn't doing very well. They made me move positions to try and get JoJo's heartbeat up, but nothing seemed to be working. They told me that I had to sign some papers and that I was going to have an emergency c-section. They started ripping things out of the walls as they started wheeling me to the operating room. It all happened so fast, I was terrified. They hooked up another IV and tried to test to see if my epidural was working. They didn't have time to make sure the epidural was working and put the gas mask over my face and that was the last thing that I remember until I woke up. Joey didn't even have time to finish scrubbing in to see JoJo born, he was born at 8:33AM, 6lbs 10oz, & 20". He had the cord wrapped around his neck once and he didn't breathe on his own for the first 5 minutes of his life. His apgars were 1, 6, & 8. He finally took a big breath & started crying. I don't know if I dreamed it, but I think I started coming out of it at the moment he started crying. If I did hear him cry, that would be the first and last time. They took him out of the room and let Joey, Randi, & Mom see him on their way to taking him to the NICU. The first time I got to see JoJo was by a picture that Joey had taken. He was such a beautiful baby, I couldn't wait to hold him, he was all mine, I was now a Mommy.
You would think that all would be well, it wasn't. JoJo was really sleepy, but the doctors said that he would get better within the next 24 hours, he was just tired from the complicated delivery. On the 2nd day, one of the nurses noticed that he was having tongue tremors. They did some testing, but couldn't figure out what was wrong so they transferred him to a hospital better equipped for special babies. No-one could tell us what was wrong, the only thing that they could come up with was lack of oxygen sometime before he was born. Around day 6 we were told that our son would probably be a vegetable for the rest of his life and that we would have to make some difficult decisions. We spent as much time with JoJo as possible. I often feel guilty because I was readmitted into the hospital with an infection from the c-section with a 104 temperature and didn't get to spend as much time with him as I would have liked. Up until 3 hours before JoJo passed away, the doctors used the diagnosis hypoxic-ischemic encephalopathy (lack of oxygen). Three hours before JoJo passed away, the doctor rushed in with a diagnosis, and it wasn't any better than the original diagnosis. A doctor in Denver had diagnosed him with NKH. We didn't even know what it meant or had time to digest the diagnosis, JoJo's little body just couldn't fight any longer, he was now our sleeping Angel.
Baby Joseph passed away from NKH or Nonketotic Hyperglycinemia. It is a rare metabolic disorder that we didn't know he had until 3 hours before he passed away. NKH can't be cured. As of now there isn't any prenatal testing in the US because it is such a rare disorder. As for newborn screening, only 2 states ( N & S. Dakota) test for NKH. We are hoping that we can educate the public and hopefully get more states to test for this disorder and others. We are also trying to start a non-profit foundation so that we can help educate the public and maybe get some help for the children living with this disorder.
Dr. Van Hove and the assistant doctor are trying to make a NKH research center in Denver at the Children's Hospital. He said that they aren't currently receiving any grant money nor do they have a fund set up specifically for NKH. They said that it is going to cost about $20K to get the clinic up and running and that it should only cost about $40K annually. He is hoping that they will be able to do the CVS testing soon, but is unsure due to manning and funds.
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