On November 30, 2007 my life changed as I knew it. I was exactly 39 weeks pregnant with my second child. My day was like any other, however, my night wasn't. At around 10:00 I started having some hard back pain. I thought I may be in labor but wasn't really convinced. I laid in my bed for 30 minutes or so before deciding to call my mom for some "motherly advise." I told her I had a constant pain in my back, but, it didn't sound like labor to her. She asked me if the baby had moved any that day (she had never asked me this with either of my pregnancies)! But, it had occurred to me I hadn't. I felt like something wasn't right. You know how you go to Walmart with your grocery list and before you leave you make sure you got everything on that list but, you still feel like you forgot something, that gut feeling you have. Well, that is what I felt. I knew right then I needed to go to the hospital. By 12:00 I was admitted and hooked up to the monitors. The nurse noticed with the first contraction that the baby's heart rate was dropping, dramatically. She called my Doctor and immediately prepared me for a c-section. Before I knew it I was in the operating room being cut open to remove my baby from my body. At 2:10 am my son, Christian was on born on Dec 1, 2007. Weighing 6 pounds and 3 ounces. He wasn't breathing and was not healthy at all. He was taken to the nursery with the curtains closed, were he couldn't be seen by our family while trying to resesitate. Meanwhile, I was sewed up and wheeled to recovery, anxiously waiting to hear about my baby. My Doctor and the Pediatrician came in soon after I was taken to recovery and told me my son had to be flown to Kosair Children's Hospital where he would be cared for in the NICU. He was in critical condition and was not expected to make it. I was in shock and could believe what was going on. I was given some medication that knocked me out. They brought him in my room in an incubator before he was flown. But, I was so drugged up and he was covered with a blanket, all I could see was his sweet little hand and some of his thick red hair sticking up. This was the first look I got of him and he was already about 2 hours old. He was taken away at 4:30 AM and I had didn't get to see him again till 7:00 PM the next day. I saw my son for the first time when he was close to two days old and he was hooked to numerous monitiors and machines. Seeing my son hooked to everything possible about brought me to the floor (literally). The next few days were the hardest. We were told that Christian might not make it and if he did the damage to his brain coul
d cause him to be severally disabled. He night not ever walk or talk. The next few days we started getting answers on what his little body was going through.
d cause him to be severally disabled. He night not ever walk or talk. The next few days we started getting answers on what his little body was going through. -He was diagnosed with Hypoxic Ischemic Encephalopathy (characterized by brain injury due to asphyxia and/or reduced cerebral blood flow).
-He was in respiratory distress at the time of birth and may of caused significant brain damage due to lack of oxygen to the brain.
- Which lack of oxygen caused, his kidneys to shut down and Persistant Pulmonary Hypertension (a serious disorder in which the arteries to the lungs remain narrow (constricted), after delivery, limiting the amount of blood flow to the lungs and therefore the amount of oxygen in the bloodstream.)
-He developed sepsis as a result of swallowing some meconium.
-The senses in his body were so disorganized that he could not tolerate touch, sound or light. That kind of stimulation could of killed him.
-He had hydrocephalus (which is extra fluid on the brain)
-He had a dilated aorta in his heart.
-He had to have a blood transfusion and a platelet transfusion the day he was born.
*The day he left the NICU they sent a summary home all the health issues he had while in the NICU and it is 2 pages long. I don't know what half the words mean. But, I listed the major health problems.
- Which lack of oxygen caused, his kidneys to shut down and Persistant Pulmonary Hypertension (a serious disorder in which the arteries to the lungs remain narrow (constricted), after delivery, limiting the amount of blood flow to the lungs and therefore the amount of oxygen in the bloodstream.)
-He developed sepsis as a result of swallowing some meconium.
-The senses in his body were so disorganized that he could not tolerate touch, sound or light. That kind of stimulation could of killed him.
-He had hydrocephalus (which is extra fluid on the brain)
-He had a dilated aorta in his heart.
-He had to have a blood transfusion and a platelet transfusion the day he was born.
*The day he left the NICU they sent a summary home all the health issues he had while in the NICU and it is 2 pages long. I don't know what half the words mean. But, I listed the major health problems.
The whole time he was in the NICU he was sedated, were he could rest easier and help keep him stable. By 5 days old he had enough strength to make his first cry sound. At 10 days old he was taken off of his High Frequency Ventilator machine and was put on C-pap (a machine that circulates clean air). By 11 days he moved his hand for the first time. He was finally stable enough to receive his feeding tube at 12 days old, this was also the day I got to touch him for the first time. I rubbed lotion on his dry arms. He had never had any nourishment up till this point and caused him to drop to 4 pounds. He lost over 2 pounds in 11 days. That is huge amount for a baby! But, everyday he continued to get better and gain weight back a little at a time. At 17 days old I was able to hold him for the first time!! He spent his first Christmas in the NICU, which was so hard, considering we had a 2 year old as well and couldn't be two places
at once and she was not allowed in the NICU by the hospital. At 26 days old he had newborn hearing screening, past in the left ear but, failed in the right. He was referred to have further testing done. He was completely weaned off of all sedation medication by 27 days or so and spent the last couple of days only hooked to a heart monitor. He had his MRI done before he left the hospital and we were told the hydrocephalus may require having a VP shunt placed in his brain later in the future. We were told he may need heart surgery due to the enlarged aorta, that could explode and kill him.
On December 30, our baby boy did what I thought he may never do....come home! He was welcome home by all of our family. We were told that any kind of germs or sickness could land him back in the hospital and just 7 days after being home he had to go right back. He had RSV and spent 10 more days in the hospital. He spent 40 days in the hospital the first month and a half of his life. My husband and I wondered if our lives would ever be normal again.
The day after he got out of the hospital for the second time, started his never ending process of going to his specialist's to keep a close eye on him. Over the next few months that is what our live consisted of....going to all the Doctors, not to mention all the further retesting he had to do. In March at 3 months old, his hydrocephalus stabilized and the amount of fluid in his brain was normal and still is to this day at 2 years old! Cardiologist did another echo on his heart and the aorta was a normal size for his heart. At 3 months old he was dignosed with torticollis (a shortened muscle on one side of the neck) and was referred for physical therapy. We had one battled left to face.....his hearing test. His hearing loss was officially diagnosed on May 1, 2008 at 5 months old. He had normal hearing in the left and severe to profound hearing loss in the right.
at once and she was not allowed in the NICU by the hospital. At 26 days old he had newborn hearing screening, past in the left ear but, failed in the right. He was referred to have further testing done. He was completely weaned off of all sedation medication by 27 days or so and spent the last couple of days only hooked to a heart monitor. He had his MRI done before he left the hospital and we were told the hydrocephalus may require having a VP shunt placed in his brain later in the future. We were told he may need heart surgery due to the enlarged aorta, that could explode and kill him.
On December 30, our baby boy did what I thought he may never do....come home! He was welcome home by all of our family. We were told that any kind of germs or sickness could land him back in the hospital and just 7 days after being home he had to go right back. He had RSV and spent 10 more days in the hospital. He spent 40 days in the hospital the first month and a half of his life. My husband and I wondered if our lives would ever be normal again.
The day after he got out of the hospital for the second time, started his never ending process of going to his specialist's to keep a close eye on him. Over the next few months that is what our live consisted of....going to all the Doctors, not to mention all the further retesting he had to do. In March at 3 months old, his hydrocephalus stabilized and the amount of fluid in his brain was normal and still is to this day at 2 years old! Cardiologist did another echo on his heart and the aorta was a normal size for his heart. At 3 months old he was dignosed with torticollis (a shortened muscle on one side of the neck) and was referred for physical therapy. We had one battled left to face.....his hearing test. His hearing loss was officially diagnosed on May 1, 2008 at 5 months old. He had normal hearing in the left and severe to profound hearing loss in the right.
Throughout the next year his development was the biggest issue and he was showing delayments. He was enrolled in first steps at 7 months old, targeting his motor issues along with continuing to get PT services for his torticollis. Every milestone was a bit delayed but eventually he learned how to roll over, sit up, crawl and even walked! But by 15 months he was not saying mama and dada and we added speech therapy to our developmental intervention. The speech therapist started using sign language for Christan's communication. By 18 months he was signing a few words and was only saying cat. His torticollis improved by about 95% and he was let go by the PT after 13 months of therapy. At 20 months therapists and Doctors started noticing sensory issues and he was pick
ed up by occupational therapy in October of 2009. This was the hardest battle for me, seeing as I didn't understand about Sensory Processing Disorder and his OT was not helpful. So, we switch and got a better one in Feb of 2010. In November of 2009 he had his 3rd ABR done at Vanderbilt University, which showed normal results in the left ear but he had full profound hearing loss in the right ear. He is now being followed by the National Center For Childhood Deafness in Nashville TN. He also has had a Teacher of the Deaf to work with him and will advocate for him when he starts Preschool. In April of 2010, he was diagnosed with significant speech delay by a level 4 speech pathologist. His "team of people" are doing everything possible to help him with his significant speech delay and single sided deafness.
Christian now uses sign as his main source of communication. Signing up to 60 words and using 20 on a regular basis, even signing full sentences (when not being a stubborn little boy.) He has flare ups with his torticollis every now and then. He doesn't use his right hand as often as he should....only when he has too.
As far as his health...HE IS COMPLETELY HEALTHY!! His sensory issues are still a problem but he is allowing techniques to be done now so it is getting better. His development and speech is the major concern now for the Neurologist. He knows in time Christian will talk but he may never have articulate speech. Christian once had about 15 specialist's, but he has been released by all but two, the ENT and Neurologist. He won't see Cardio again until when he is 4 and the Genetist when he is 4 as well, which is pretty amazing! To date he has had NO surgerys and is not expected to ever have any!
I never thought in a million years he would of gone through half of what he did. But, it happened. It is still happening, he is still fighting battles. But, we have beaten the odds many times! His team of Doctor's never believed in him...but I did and I believed in the power of God! My son is a fighter that keeps on fighting. I wish I could change all the bad things that happened to him. But I would not change my son....he is exactly who he is meant to be. I love him for who he is despite the challenges he faces on a day to day basis. No matter what happens I will always be there for him pushing him along the way. I will never give up on my boy and I hope he never gives up on his self!
ed up by occupational therapy in October of 2009. This was the hardest battle for me, seeing as I didn't understand about Sensory Processing Disorder and his OT was not helpful. So, we switch and got a better one in Feb of 2010. In November of 2009 he had his 3rd ABR done at Vanderbilt University, which showed normal results in the left ear but he had full profound hearing loss in the right ear. He is now being followed by the National Center For Childhood Deafness in Nashville TN. He also has had a Teacher of the Deaf to work with him and will advocate for him when he starts Preschool. In April of 2010, he was diagnosed with significant speech delay by a level 4 speech pathologist. His "team of people" are doing everything possible to help him with his significant speech delay and single sided deafness.Christian now uses sign as his main source of communication. Signing up to 60 words and using 20 on a regular basis, even signing full sentences (when not being a stubborn little boy.) He has flare ups with his torticollis every now and then. He doesn't use his right hand as often as he should....only when he has too.
As far as his health...HE IS COMPLETELY HEALTHY!! His sensory issues are still a problem but he is allowing techniques to be done now so it is getting better. His development and speech is the major concern now for the Neurologist. He knows in time Christian will talk but he may never have articulate speech. Christian once had about 15 specialist's, but he has been released by all but two, the ENT and Neurologist. He won't see Cardio again until when he is 4 and the Genetist when he is 4 as well, which is pretty amazing! To date he has had NO surgerys and is not expected to ever have any!I never thought in a million years he would of gone through half of what he did. But, it happened. It is still happening, he is still fighting battles. But, we have beaten the odds many times! His team of Doctor's never believed in him...but I did and I believed in the power of God! My son is a fighter that keeps on fighting. I wish I could change all the bad things that happened to him. But I would not change my son....he is exactly who he is meant to be. I love him for who he is despite the challenges he faces on a day to day basis. No matter what happens I will always be there for him pushing him along the way. I will never give up on my boy and I hope he never gives up on his self!
Thank you for the time you took to learn about my son. I hope you will follow as I update through the rest of his journey.
