Posts filed under: ‘hydrocephalus‘




Head rocker

James has been rocking his head back and forth alot lately, it might be time for another run to the doctor’s office. Does this happen to anyone else’s babies? His therapist thinks it could be fluid in his ears, which he has had several problems with this year.

Abigail and James

Abigail and James

3 comments May 28, 2009

James’ Story

pict0065babyjames1March 31,2008 was the worst day of my life! This was the day Jeremy and I went for our 20 week ultrasound. He left work and met me at Qdoba where we ate lunch and then we went over to the OB’s office for my appointment. When the ultrsound tpict0059babyjames2ech ran her wand over my belly, the first thing I remember seeing was the baby yawning. It was so cute. We were not planning on finding out the sex of the baby, just wanted to make sure everything checked out okay. I remember the head being very black looking, I didn’t remember the girls head’s looking like that. The tech said it looked like there was some extra fluid in the brain. She finished the ultraound and told us to wait for Dr. Koontz to come talk to use. We were nervous, but I didn’t think it would be a big deal. He came in with the pictures and said ” This is really bad folks.” He started to tell us about how the baby had about 10 times the amount of spinal fluid in his head then he should. He also said he had some cardiac abnormalities. He said the only thing we could do was continue the pregnancy or terminate it. We said we would continue on ( the thought of abortion is sickening to us.) He recommended we do an amnio to gain more information and that we see a neurosurgeon and pediatric cardiologist. He took me for the amnio and it was very nerve wracking. He used the ultrasound to insert the needle, I remember thinking Please don’t move now baby! I never thought I would have one of these done, but he made it sound like a good idea. The procedure went fine, so we went back to the room to see my regular doctor, Dr. Reinstine. He was very sad for us and gave us a hug, and told us we didn’t have to do anything else today, he just gave me his cell number so I could call him later. Jeremy took the rest of the day off, and we both went home, and we cried all the way home, and alot for the next several months. I came home and my dad was keeping our kids, and he could tell we were upset, we told him about the baby, and he gave me a hug and said he would tell mom for me and not to worry because he didn’t know anyone who had more faith than my mom did. She stopped by later today, and so did Jeremy’s mom and dad, and his brother and sister in law.  Our priest Father Joe came to our house with his pastoral associate Joanie and they prayed with us. I called in work the next day and sent an email to my co-workers to let them know what was going on. I work on a Mother/Baby Unit, so I didn’t think I could handle going in yet. Two very long weeks later, the amnio results came back normal, and we found out it was a boy! We were excited about that, I was almost sure it was a boy since I found out I was pregnant. We picked the name James Patrick, and told everyone about it. He was added to lots of prayer lists and people always asked about him. When I was 27 weeks, I was put on partial bedrest due to high blood pressures. This happened to me with my other pregnancies. I was put on Labetolol and had to stop working. When I went to the office for my 31 week check-up, my blood pressure was still very high despite the medications, so he admitted me to the antepartum unit at my hospital. I had to call my neighbor ( who had the girls) to tell her I wouldn’t be home, so she said she could keep them until my mother in law could pick them up that night. Thank God for her! I called my husband, and told him not to worry, he could just stay at work and I gave him a list of what to bring me that night ( we had been through this before with Ava). They took me for an ultrasound that night and then again the next day. The blood flow was being restricted through his umbilicul cord either due to my pre-eclampsia or his hydrocephalus. His body measured 28 weeks and his head measured 42 weeks! It was terrifying! The high risk OB came in to tell me that if we don’t deliver soon, he will probably be stillborn. They decided to do a c-section the next day, so I could finish my steroid shots. They left me on the fetal  monitors, and I had to transfer to a different hospital for delivery( so James could go to the NICU at Kosair Hospital). My priest came in that night to give me an annointing of the sick, and I felt very at peace after that. The next day at noon, I went back for my c-section and Baby James made his debut into the world. He apgar’d at 4 and 8, and was finally able to breathe on his own after a little bit of prodding. Jeremy brought him up to my face for a minute, but then they took him to the NICU. He was baptized 1 hour later. I did not see him again until the next afternoon, because I had to stay in bed and was on magnesium sulfate (anti-seizure medicine.) The nurses took some 8X10 photos and brought them to my room for me. He was stable and doing well so far. We got alot of good news that day, and it was such a relief that he was here and Alive! I will continue his story about his NICU journery in another post.

pict0084

1 comment January 29, 2009

Hello world!

James Patrick 7 months old!

James Patrick 7 months old!

This is the first entry to my first blog!  My source of inspiration for this is my baby James and my other 2 kids, Ava (3) and Abigail (almost 2). I thought it would be fun to keep track of things. James was diagnosed with hydrocephalus when I was only 5 months pregnant with him. It turned my world upside down, along with my husband Jeremy. We had a long year with a lot of ups and downs, so I am excited to start a fresh new year. James is doing so good now, he is 7 months old, corrected age 5 months. He is so loved by us and his sisters and all our family. He was born on June 18th 2008, and was 2 months premature due to his hydrocephalus and my pre-eclampsia. His apgar scores were 4 and 8. He weighed 4 lb 5 oz. and was 16 inches long and his head circumference was 37cm. He spent 2 long months at Kosair Children’s hospital and we brought him home 1 day after his due date on August 14th. He underwent 2 surgeries for his hydrocephalus along with many other things that preemies go through. He did learn to breastfeed after me pumping for 2 months for him and is still nursing well. He is a source of inspiration for us. Before I get off here, today is my husband’s 28th birthday, so Happy Birthday Jeremy!

2 comments January 27, 2009

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