Stacy Mom to 1 with Stroke in Utero, 22q11.2deletion, Quad CP, Factor V Leiden, Severe Reflux
Let me introduce myself, my name is Stacy and I am married to Jeff and we have the cutest little monkey named James who was born @ 39 weeks on August 29th 2009 via emergency c-section. During the entire 9 months, James just liked to kick back and relax; he was not a mover and shaker. My mom would tell me all the time that I was not much of a mover either. Around 6pm on August 28th my water broke and we were off to hospital to give birth to our little man. I remember as I was leaving the condo, I said to Jeff, “when we come back, our whole world will change, you ready for this?”… boy was I right!!
On August 28th @ 10pm I was hooked up to the fetal monitor and we were watching James heartbeat go pitter patter, pitter patter, but it was not good enough for the docs and nurses. They wanted to see him moving more and kicking up that heart rate. I told the nurses this was normal, he was not much of a mover. The nurse was checking me and hooked a monitor to James’ head to see if we can catch his movements better that way. While she was hooking the monitor to his scalp, she was tapping his head and he didn't move. After that moment, she called the doc and next thing I know I am having a c-section to get him out just in case he was in distress. The c-section was quick and painless but when James was born, he didn't cry, he only had a two vessel cord, low muscle tone but was shaking his arm. He went to one way to the NICU for some further examinations, & I went the other way to my room. We had no idea how true my statement was before we left the hospital, our lives were about to take a WILD ride!
James spent 2 months in the NICU (8/29/09-10/29/10) and while he was there we found out that he:
- had a stroke during my 1st trimester
- no suck/swallow reflexes; he has a g-tube to eat
- he has a blood clotting disorder called Factor V Leiden;
- his optic nerve in his left eye never fully developed and he is extremely far-sighted
- he has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22.
- he has sever reflux and had a surgery called Fundoplication to prevent further reflux
- diagnosed with Quad Cerebral Palsy in September 2010
After James got out of the NICU we were in and out of the hospital for several months. During one of those hospital stays in January 2010, we saw some strange twitches. We called GI doctor because it looked like reflux. The GI called neurology and we were diagnosed with Infantile Spasms; a form of Epilepsy. We tried medicine after medicine but nothing seems to work. We are still holding hope that our little man will find the right path to become seizure free.
James just turned 2 in August 2011 and has not met any of his milestones, except getting bigger and cuter!! We love James with all of our heart and soul and plan on doing anything and everything to help him. Even though it will be financially straining on Jeff and myself, James will receive anything he needs to make his life the best it can be.
On August 28th @ 10pm I was hooked up to the fetal monitor and we were watching James heartbeat go pitter patter, pitter patter, but it was not good enough for the docs and nurses. They wanted to see him moving more and kicking up that heart rate. I told the nurses this was normal, he was not much of a mover. The nurse was checking me and hooked a monitor to James’ head to see if we can catch his movements better that way. While she was hooking the monitor to his scalp, she was tapping his head and he didn't move. After that moment, she called the doc and next thing I know I am having a c-section to get him out just in case he was in distress. The c-section was quick and painless but when James was born, he didn't cry, he only had a two vessel cord, low muscle tone but was shaking his arm. He went to one way to the NICU for some further examinations, & I went the other way to my room. We had no idea how true my statement was before we left the hospital, our lives were about to take a WILD ride!
James spent 2 months in the NICU (8/29/09-10/29/10) and while he was there we found out that he:
- had a stroke during my 1st trimester
- no suck/swallow reflexes; he has a g-tube to eat
- he has a blood clotting disorder called Factor V Leiden;
- his optic nerve in his left eye never fully developed and he is extremely far-sighted
- he has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22.
- he has sever reflux and had a surgery called Fundoplication to prevent further reflux
- diagnosed with Quad Cerebral Palsy in September 2010
After James got out of the NICU we were in and out of the hospital for several months. During one of those hospital stays in January 2010, we saw some strange twitches. We called GI doctor because it looked like reflux. The GI called neurology and we were diagnosed with Infantile Spasms; a form of Epilepsy. We tried medicine after medicine but nothing seems to work. We are still holding hope that our little man will find the right path to become seizure free.
James just turned 2 in August 2011 and has not met any of his milestones, except getting bigger and cuter!! We love James with all of our heart and soul and plan on doing anything and everything to help him. Even though it will be financially straining on Jeff and myself, James will receive anything he needs to make his life the best it can be.