Trying to keep up in this house isn't an easy task!!! Drake is having major trouble keeping his weight up. It seemed to slowly drop, but funny how Daddy saw it first this time. He 's down to 21.3 lbs. as of yesterday. He's looking quite frail and the orthopedic doc is concerned about his muscle mass around the joints.
And to top it off Drake has started having trouble with fainting spells!
I need to go back to fill in(this is once again where I wish I had been blogging all along). About 4 weeks ago, I had Drake on his changing table. He was being a very happy, good little boy (you can tell I'm not partial). I was looking down in the drawer to get a diaper when I noticed his legs go limp and fall flat. I saw his body twitching all over and his eyes rolling up. I immediately called for Shane to bring me the telephone. It only lasted a few seconds, but then they started every 30 seconds or so 5 more times. As I 'm trying to keep calm and decide who to call. Of course it was at one of those times where every one's office is closed and gone home. I didn't think we needed to call the hospice on call nurse or the doctor's after hours, I didn't really want to sit at the ER for hours just to wind up back home tired and frustrated finding nothing.
I guess I wasn't too panic stricken due to seeing grand mal seizures on my fire department days and then witnessing several variances of seizure activity in some of Drake's class mates. So who do I call? My friend and Drake's teacher Lori. I know, I know, I shouldn't have probably made her my first, but I knew she would tell me to get to the ER if she thought I was wrong in my assumptions. She has a very calming way about her and with her 20 some years experience, I knew she was my BEST option. She told me what to keep an eye on; color, breathing, timing of them and timing apart.
I did place a call to the Neurologist the next day(Friday) then again on Monday, only to have the nurse call with little concern to tell me what Lori had already said. They scheduled an EEG the following week only to find nothing.
So no more activity the rest of that evening, next day as a matter of fact, it took 3 more weeks to see yet another episode. This time was a little different, same time as before(8:00pm), but he was in his chair, upright. I was playing with his feet getting his nightly toddy ready when out he went, like a light, it happens so fast, out of no where land. It's an eerie sight to see your child pass out. He came to in about 3-5 seconds then out again 20 or so seconds later. This time I wanted action, so once again, I set put to make phone calls to everyone I could the next day with once again little urgency. I know I'm new this type activity for Drake, but give me a little grace to help figure this out!It may seem I'm saying again an awful lot, but is what has happened again and again and again.There I said it, again!!!!
Finally, the Neurologist(whom I will write about another day) has set another EEG. This time a sleep deprived EEG to try and force this same activity.Whatever!! We'll see next week and pray for Drake's original Neurologist to be wrong about the likelihood of seizures to occur at some point.
Saturday, February 23, 2008
Saturday, February 16, 2008
Starting All Over
I will try and start an update weekely on Drake starting today. It might take awhile to catch everyone up from the past and I'll forget these moments as well. I hope you have been enjoying the story about Drake up untill now. This will be a continual blog from here, so please check back every so often to get an update or just to see how our life is going.
A Brain Storm!!!
I think I have been putting off this particiular entry due to the memory lapse. I beleive that God lets you forget certain things so you can go on with your everyday life.
So, Shane and I had a follow-up appointment with the Nurologist,Dr.Roach, to see what the CT scan showed. (This was one of the few appointments Shane was able to go.) The doctor walked in and started small talk as always and proceeded to tell us about his findings.
It went something like this. "Drake is missing a part of his brain and his brain is not growing." That's all I heard him say as I froze in horror!!! How are you suppose to react to such news ? What questions do you ask? Was this what it feels like when your heart truley breaks?All I could say as I looked at the floor, wishing I could curl up on it and dissapear, was "STOP". I had to stop the doctor in mid sentence. I asked him to please stop talking so I could think. The doctor paused a moment and then proceeded to say he was sorry and that he thought we had heard this information before. It's one of those times I looked back wondering where exactly he thought we had gotten information before seeing him .But I guess there isn't really ever a "good" time to get such news.
The information, as it turns out, was Drake has microcephaly,colpocephaly and agenisis of the corpus callosum.I will define each:
Microcephaly is a neurological disorder in which the circumference of the head is significantly smaller than average for the person's age and sex. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. Two copies of a loss-of-function mutation in one of the microcephalin genes causes primary microcephaly.
Infants with microcephaly are born with either a normal or reduced head size. Subsequently the head fails to grow while the face continues to develop at a normal rate, producing a child with a small head and a receding forehead, and a loose, often wrinkled scalp. As the child grows older, the smallness of the skull becomes more obvious, although the entire body also is often underweight and dwarfed. Development of motor functions and speech may be delayed. Hyperactivity and mental retardation are common occurrences, although the degree of each varies. Convulsions may also occur. Motor ability varies, ranging from clumsiness in some to spastic quadriplegia in others.
Generally there is no specific treatment for microcephaly. Treatment is symptomatic and supportive.
In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.
Colpocephaly is a type of cephalic disorder. This is a disorder in which there is an abnormal enlargement of the occipital horns - the posterior or rear portion of the lateral ventricles (cavities or chambers) of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter in the posterior cerebrum. Colpocephaly is characterized by microcephaly (abnormally small head) and mental retardation. Other features may include motor abnormalities, muscle spasms, and seizures.
Although the cause is unknown, researchers believe that the disorder results from an intrauterine disturbance that occurs between the second and sixth months of pregnancy. Colpocephaly may be diagnosed late in pregnancy, although it is often misdiagnosed as hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). It may be more accurately diagnosed after birth when signs of mental retardation, microcephaly, and seizures are present.
There is no definitive treatment for colpocephaly. Anticonvulsant medications can be given to prevent seizures, and doctors try to prevent contractures (shrinkage or shortening of muscles). The prognosis for individuals with colpocephaly depends on the severity of the associated conditions and the degree of abnormal brain development. Some children benefit from special education.
Agenesis of the Corpus Callosum (ACC) (agenesis comes from the greek word "γεννεσις" meaning birth, creation precluded with "a" which gives the opposite meaning) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. Agenesis of the corpus callosum occurs when the corpus callosum, the band of tissue connecting the two hemispheres of the brain, fails to develop normally, typically in utero, resulting in disconnected brain hemispheres. The development of the fibers which would otherwise form the corpus callosum become longitudinally orientated within each hemisphere and form structures called .Signs and symptoms of Agenesis of the Corpus Callosum and other callosal disorders vary greatly among individuals. However, some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, chewing and swallowing difficulties, early speech and language delays, and social difficulties. Recent research suggests that specific social difficulties may be a result of impaired face processing.[6] Unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger's syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.
So, I asked some of the inevidable questions. Is he going to be mentaly dissabled, will he ever know that we are his parents, how long will Drake live? I'm not sure weather I really wanted to know the answers to these questions, but I felt the need to ask.Of course there were no answers to those type qustions. He did tell us that Drake might be more prone seizuers, and that his cooridination might be imparied.
Shane and I did'nt talk much on the car ride home. What do you say to the person you love and made all this happen with? After we got home and put the boys to bed, I cried myself to sleep, and the next day and the next. This is where I wish I had been blogging all along so I did'nt have to repeat the news so many times to so many people. It was funny that the same questions came from several people, will he out grow this or is'nt there a surgery to fix it? The answer was and still is NO!
I think this was where I began feeling as if I was losing Drake. My hopes and dreams for him were begining to change, it seemed more like I was'nt sure what my hopes and dreams should be for a child that might never know us as the people who love him more than any other being on the planet. I guess I felt as if I did'nt even know my own son, or even wanted to.
About that time I started talking to an old friend, Taylor Swink. We had been friends through her husband for several years. It seemed she had heard of our trials. Taylor called to see how we were doing and what was going on with Drake. She told me it was okay to take time to grieve for the child we would not have (since I truly felt as if he were dying) .Wow, what a revelation that was for me. I was finally given permision to be sad for Drake, to be sad for me, to be sad for our family, just to be sad. Thank-You!
So, Shane and I had a follow-up appointment with the Nurologist,Dr.Roach, to see what the CT scan showed. (This was one of the few appointments Shane was able to go.) The doctor walked in and started small talk as always and proceeded to tell us about his findings.
It went something like this. "Drake is missing a part of his brain and his brain is not growing." That's all I heard him say as I froze in horror!!! How are you suppose to react to such news ? What questions do you ask? Was this what it feels like when your heart truley breaks?All I could say as I looked at the floor, wishing I could curl up on it and dissapear, was "STOP". I had to stop the doctor in mid sentence. I asked him to please stop talking so I could think. The doctor paused a moment and then proceeded to say he was sorry and that he thought we had heard this information before. It's one of those times I looked back wondering where exactly he thought we had gotten information before seeing him .But I guess there isn't really ever a "good" time to get such news.
The information, as it turns out, was Drake has microcephaly,colpocephaly and agenisis of the corpus callosum.I will define each:
Microcephaly is a neurological disorder in which the circumference of the head is significantly smaller than average for the person's age and sex. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. Two copies of a loss-of-function mutation in one of the microcephalin genes causes primary microcephaly.
Infants with microcephaly are born with either a normal or reduced head size. Subsequently the head fails to grow while the face continues to develop at a normal rate, producing a child with a small head and a receding forehead, and a loose, often wrinkled scalp. As the child grows older, the smallness of the skull becomes more obvious, although the entire body also is often underweight and dwarfed. Development of motor functions and speech may be delayed. Hyperactivity and mental retardation are common occurrences, although the degree of each varies. Convulsions may also occur. Motor ability varies, ranging from clumsiness in some to spastic quadriplegia in others.
Generally there is no specific treatment for microcephaly. Treatment is symptomatic and supportive.
In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.
Colpocephaly is a type of cephalic disorder. This is a disorder in which there is an abnormal enlargement of the occipital horns - the posterior or rear portion of the lateral ventricles (cavities or chambers) of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter in the posterior cerebrum. Colpocephaly is characterized by microcephaly (abnormally small head) and mental retardation. Other features may include motor abnormalities, muscle spasms, and seizures.
Although the cause is unknown, researchers believe that the disorder results from an intrauterine disturbance that occurs between the second and sixth months of pregnancy. Colpocephaly may be diagnosed late in pregnancy, although it is often misdiagnosed as hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). It may be more accurately diagnosed after birth when signs of mental retardation, microcephaly, and seizures are present.
There is no definitive treatment for colpocephaly. Anticonvulsant medications can be given to prevent seizures, and doctors try to prevent contractures (shrinkage or shortening of muscles). The prognosis for individuals with colpocephaly depends on the severity of the associated conditions and the degree of abnormal brain development. Some children benefit from special education.
Agenesis of the Corpus Callosum (ACC) (agenesis comes from the greek word "γεννεσις" meaning birth, creation precluded with "a" which gives the opposite meaning) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. Agenesis of the corpus callosum occurs when the corpus callosum, the band of tissue connecting the two hemispheres of the brain, fails to develop normally, typically in utero, resulting in disconnected brain hemispheres. The development of the fibers which would otherwise form the corpus callosum become longitudinally orientated within each hemisphere and form structures called .Signs and symptoms of Agenesis of the Corpus Callosum and other callosal disorders vary greatly among individuals. However, some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, chewing and swallowing difficulties, early speech and language delays, and social difficulties. Recent research suggests that specific social difficulties may be a result of impaired face processing.[6] Unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger's syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.
So, I asked some of the inevidable questions. Is he going to be mentaly dissabled, will he ever know that we are his parents, how long will Drake live? I'm not sure weather I really wanted to know the answers to these questions, but I felt the need to ask.Of course there were no answers to those type qustions. He did tell us that Drake might be more prone seizuers, and that his cooridination might be imparied.
Shane and I did'nt talk much on the car ride home. What do you say to the person you love and made all this happen with? After we got home and put the boys to bed, I cried myself to sleep, and the next day and the next. This is where I wish I had been blogging all along so I did'nt have to repeat the news so many times to so many people. It was funny that the same questions came from several people, will he out grow this or is'nt there a surgery to fix it? The answer was and still is NO!
I think this was where I began feeling as if I was losing Drake. My hopes and dreams for him were begining to change, it seemed more like I was'nt sure what my hopes and dreams should be for a child that might never know us as the people who love him more than any other being on the planet. I guess I felt as if I did'nt even know my own son, or even wanted to.
About that time I started talking to an old friend, Taylor Swink. We had been friends through her husband for several years. It seemed she had heard of our trials. Taylor called to see how we were doing and what was going on with Drake. She told me it was okay to take time to grieve for the child we would not have (since I truly felt as if he were dying) .Wow, what a revelation that was for me. I was finally given permision to be sad for Drake, to be sad for me, to be sad for our family, just to be sad. Thank-You!
Friday, January 25, 2008
1,2,3, how many doctors do you see?
As I sit here looking back at my calendar, everything becomes a haze of memories. I can't decide weather to tell every little detail or skip some of the daily struggles. I think I should start by saying at this point Drake is still only less than 4 weeks old.
My mother(Marian) began coming every weekend to help with the laundry and rocking of the baby. She also accompanied me to several doctor appointments. It seemed great to have an extra set of ears to hear all the information thrown at me so I could go home and explain the best I could to Shane. He went to as many doctor appointments as possible, but that became MY full time job. Shane went back to work after Drake was two weeks old. He has been the BEST dad/daddy/father any child could wish for! He continued to work 7 days a week and still not complain when I needed him in the middle of the night to help.
My best friend Kennette started coming to rock Drake several nights from 9 p.m. till midnight. We would set an alarm clock to get up for her to go home. It was the one way she thought she could offer relief before the all night crying spells began. (At this point it seemed Drake would cry even when you touched him.) My mother-in-law(Carole) helped during the weekdays weather it was to listen to me or share a cup of coffee. I also had a baby nurse(Ms.Thelma) to help. She was there to hold Drake through the nights while we tried to settle back in to reality. Now that I look back it sounds like I had it made. Maybe I should have bought a box of bonbons and enjoyed it. For some reason though the sound of your child crying consistently took away from even the simple things!!! Even the joys of a newborn.
So the doctor appoints started flowing like hot lava. You could see them coming, but couldn't run fast enough to get away and there was certainly no way to stop them. After the appointment with Dr.Kirse(ENT) at Brenner Children's Hospital, we decided to have all possible doctors in one location. It would take a year(or two) to tell about all appointments held. I will do my best to summarize the majority and hit on the important stuff. Looking back at my 2005 calendar, Drake had an 1-3 appointments every week for 17 weeks in a row.
Dr.Hill (gastroenterologist) was an important doctor. Little did I know at the time he would be the one to play a key part of Drake's well being. He began putting him on Previcid to help with reflux. It seemed he was on a different kind of medicine from the pediatrician and Dr. Hill said sometimes it's known to cause headaches. Great, first I was starving my child, then providing headaches. He did reassure me this wasn't colic, I'm wasn't sure if this was good news or not, since colic usually subsided at some point in time.
The next set of people we started seeing was at the CDSA(Children's Developmental Services Agency). This is a place where Guilford County provides services for families that need help. I remember talking on the phone, in desperation, to a woman who was an Occupational Therapist. Her name was Kim Millsaps, she began to give me tips on getting Drake to use his bottle better. He seemed to not enjoy taking his milk like most children. I thought wow, here is someone that deals with this daily and I had never even heard of what an OT does. We went to visit the CDSA for temporary therapy with Kim. Silly me,thinking "we won't need such help for long". There we were introduced to Nancy Norman (head of the CDSA) who showed our family they really did care about Drake. And then Brooke Juneau with Family Support Network / M.O.M.S.(mothers of miracles).
We were assigned a "case worker" Carmen Ward. Yet another angel sent to us. I knew there was a long list of doctors and therapist for us deal with, as it turns out God gave us Carmen to over see the beginning of this endeavor. She began setting us in place with all the help we could get from therapy to support groups to contacting doctors when I didn't think I could make one more phone call. I was told she would be with us till Drake was 3 (CDSA protocol). Once again thinking, Yea Right, we won't need it that long.
Sometime in between all this, we began seeing the Audiologist(Claudia Mason) who helped get Drake his hearing aid! Which by the way took him 2 years to decide sound wasn't such a bad thing. He cried at every appointment which made it very difficult to see if he was adjusting to the sound the BAHA hearing aid offered!
Next,the Geneticist (Dr. Tamison Jewett), she proceeded to explain to us the unknowns of Drake and her deepest concern for his well being. She is doctor which has true compassion for her patients and took two hours explaining Drake's abnormalities and unusual features. That wasn't an easy appointment either, but one of importance. I guess this is where I realized we had a child with "Special Needs". You NEVER think you are going to hear those words come out of your mouth when taking abut your own child! I don't guess there is anyway of preparing for such moment. Drake decided he would be full of "moments"!
We saw the Cardiologist, Urologist, Physical Therapist, Nutritionist and a Develpomental Pediatrician(Dr. Mary Christiaanse, I'll tell her tale later) all with little excitement! Which was a good thing in my book since no news was good news! We even began Drake on Massage therapy(Wendy Cheek). She would come to the house out of the kindness of her heart to work. It was the first time I recognized Drake could relax. We joked it was the "Jesus Position" for him. After he finally let go and relaxed, he would lay there flat on his back with both arms spread eagle. I thought to my self what kind of drugs does she give him. Nothing it turns out, but there was this stuff called "Gentle Baby". It cost $75 for a half ounce bottle, I would have painted all the walls in my house if I could have. It was truly liquid gold, some sort of essential oils that seemed to help when Drake smelled it. Only a couple drops on your finger tips would do!
The optomologst(Dr.Weaver) proceeded to tell us how difficult it was to determine his ability to see. This was one doctor that got a zero in field of personality. He wasn't very polite or personable, which seemed odd since ALL the doctors till now went out of there way to explain there views of our son. He was actually down right abrupt, and it was like pulling teeth to get answers. After a couple months of once again consistent crying, at each appointment, he explained Drake was blind and might have no vision AT ALL! This was the first time I went for a second opinion at Duke to see a Dr. Buckley. He explained that Drake was in deed blind, but to what degree couldn't tell. He assured me that Dr. Weaver was one of the finest doctors he knew and thought Drake was seeing (funny analogy) one of the best. So I decided to put aside the personality conflict and settle for a great doctor. But for those of you that know me well, I did have to tell him that I'm not going to settle on being told the bare minimum about my son and that my questions need to be answered with out argument! Since then we have gotten along beautifully!!
There was also the plastic surgeon(Dr.Argenta) who needed to see his ears. The shape and placement would be something to keep a measure on. He said when he was 5-6 years old we will talk the possibility of surgery along with Dr. Kirse. This will be an on going observation to deal with of Drake's deafness. Dr.Kirse had previously ordered a CT scan where Dr. Argenta found Drake also has a submucus cleft pallet. This is where he has a cleft pallet, but covered by a normal shaped mouth. We were told he would check back also in 5 years with this. There is a 50/50 chance weather children need surgery for this. Yet, again another reason he probably couldn't suck on the bottle well. Drake was also found to have a floppy pallet and narrow passage ways, the reason he sounded like he snorted and had a week cry all the time. The doctor was also concerned with Drake's head size(microcephaly) and shape. There was little opening at his soft spot(fontanel) and referred us to the neurologist.
Tuesday, January 22, 2008
This is Where the Whirlwind Begins!!!
Let me begin by saying, God has brought people into our lives to help us through this.Family and friends included! It has been interesting to see how people react to such news about a child. A person's true colors really do shine through at times. For those of you that have truly been there you know who you are. And we thank-you for being here and holding us high to help Drake and our family deal with such obstacles.
There was an angel nurse with Guilford County Dept. of Public Health, Joy. She came to weigh Drake and check on me.(Guilford Co. does this with all new borns now) I think the hospital gave her a heads up about the crying spells. (Thank-you Guilford Co. for trying to keep an eye on the new postpartum mommies!) Not to mention I was listening to Drake cry more than myself.(colic?) Her job was to come 3 visits in a two week period and check on the baby.I'm still not sure weather it was me or the baby she really came to check on. Joy came to our home for over 9 months and helped us understand the importance of advocating for our child, (she also has a special needs grandchild) Little does she know the impact she made on our lives.
She was very concerned with the fact he cried all the time and wasn't gaining weight. She listened to everything I thought it could be. She had plenty of suggestions to help, some worked, some didn't. I was desperate to do anything to get Drake to sleep and stop crying!!!
With in two weeks Drake had an appointment with the Audiologist at Women's Hospital. This is where we found out that Drake was indeed Deaf. She tried to explain he had a Bone Conduction Hearing Loss. This is where his cochlea works, but somewhere between the outer ear and inner ear, there was trouble.Probably due to the lack of open ear canals, who knows?. She referred us to an ENT in Greensboro,Dr.Jacobs.
The following week, I had a follow-up with my OB, Dr. Lowe. (which by the way delivered both my children) This is where I started taking medication for the crying spells. He assured me I didn't have to feel this way all day long. He never belittled that I might be crying because of my circumstances with the baby. I'm so grateful for the recommendation of the medication! Even though I still cried, it seemed I could focus on the importance of taking care of Drake and Grant!!! I think what might have done it for me was when I was sitting on the side of the tub one afternoon, crying AGAIN, when Grant came in. He asked"Mommy, why do you cry all the time?" Too much for a 3 year old to have to understand! That's when I thought I'd better "Put on my Big Girl panties and deal with it!" So thanks again to Dr.Lowe for allowing me to do so.(take the meds that is, he,he!)
So in the mean while, I was once again blessed, to have a group of family & friends from MOPS (Mothers of Pre-Schoolers), which started bringing my family meals. For almost 6 weeks, my kitchen was wondering what happened! Who ever could imagine that something as simple as not having to cook could be such a BIG deal? I will admit I missed 95% of theMOPS meetings that year. ( more details later)
So on to the First in the series of Drakes Medical appointments:
Dr.Jacobs (ENT), proceeded to talk to me about the minor concern of Drake's Ears and the BIG concern of his feeding habits. She played the biggest part of his nourishment and feeding issues. This was a time I was truly happy I hadn't tried to breast feed, since I found out he didn't even know how to suck!! Dr. J suggested a particular bottle called a Haberman Feeder. Never heard of one? Well, they don't sell them at Walmart or Target! My mom (bless her) ,who was with me at the time, and I had to go to the hospital and get them. At $25 a pop!!! Yes, can you believe it?, And that wasn't a 3 pack either like the Gerbers or Dr.Browns.
The concept with the Haberman was made for children with cleft pallets.( but, Drake didn't have one of those?) All the child had to do was to bite down or press their lips together on the nipple and the milk would drip or Squirt if you will, in the mouth. It came in a 5 part nipple and yes, the parts were TINY and go down the drain EASILY!!! But all the same he immediately got the idea and began feeding. Nothing like starving your child for 3 weeks, only to figure out this concept.
She also said she needed to refer us to another doctor because she felt Drake had more issues than she could handle. She began talking about different "syndromes". At the time, I had only heard of Downs Syndrome and began to panic. I think that was a moment of whirlwind when I realized things are far more serious than I originally understood.
Now I need to remind you that through all this Drake was crying approximately 20 hours a day. Of course The feeding was the first consideration of the culprit, only to find it didn't stop with a full belly.
There was an angel nurse with Guilford County Dept. of Public Health, Joy. She came to weigh Drake and check on me.(Guilford Co. does this with all new borns now) I think the hospital gave her a heads up about the crying spells. (Thank-you Guilford Co. for trying to keep an eye on the new postpartum mommies!) Not to mention I was listening to Drake cry more than myself.(colic?) Her job was to come 3 visits in a two week period and check on the baby.I'm still not sure weather it was me or the baby she really came to check on. Joy came to our home for over 9 months and helped us understand the importance of advocating for our child, (she also has a special needs grandchild) Little does she know the impact she made on our lives.
She was very concerned with the fact he cried all the time and wasn't gaining weight. She listened to everything I thought it could be. She had plenty of suggestions to help, some worked, some didn't. I was desperate to do anything to get Drake to sleep and stop crying!!!
With in two weeks Drake had an appointment with the Audiologist at Women's Hospital. This is where we found out that Drake was indeed Deaf. She tried to explain he had a Bone Conduction Hearing Loss. This is where his cochlea works, but somewhere between the outer ear and inner ear, there was trouble.Probably due to the lack of open ear canals, who knows?. She referred us to an ENT in Greensboro,Dr.Jacobs.
The following week, I had a follow-up with my OB, Dr. Lowe. (which by the way delivered both my children) This is where I started taking medication for the crying spells. He assured me I didn't have to feel this way all day long. He never belittled that I might be crying because of my circumstances with the baby. I'm so grateful for the recommendation of the medication! Even though I still cried, it seemed I could focus on the importance of taking care of Drake and Grant!!! I think what might have done it for me was when I was sitting on the side of the tub one afternoon, crying AGAIN, when Grant came in. He asked"Mommy, why do you cry all the time?" Too much for a 3 year old to have to understand! That's when I thought I'd better "Put on my Big Girl panties and deal with it!" So thanks again to Dr.Lowe for allowing me to do so.(take the meds that is, he,he!)
So in the mean while, I was once again blessed, to have a group of family & friends from MOPS (Mothers of Pre-Schoolers), which started bringing my family meals. For almost 6 weeks, my kitchen was wondering what happened! Who ever could imagine that something as simple as not having to cook could be such a BIG deal? I will admit I missed 95% of theMOPS meetings that year. ( more details later)
So on to the First in the series of Drakes Medical appointments:
Dr.Jacobs (ENT), proceeded to talk to me about the minor concern of Drake's Ears and the BIG concern of his feeding habits. She played the biggest part of his nourishment and feeding issues. This was a time I was truly happy I hadn't tried to breast feed, since I found out he didn't even know how to suck!! Dr. J suggested a particular bottle called a Haberman Feeder. Never heard of one? Well, they don't sell them at Walmart or Target! My mom (bless her) ,who was with me at the time, and I had to go to the hospital and get them. At $25 a pop!!! Yes, can you believe it?, And that wasn't a 3 pack either like the Gerbers or Dr.Browns.
The concept with the Haberman was made for children with cleft pallets.( but, Drake didn't have one of those?) All the child had to do was to bite down or press their lips together on the nipple and the milk would drip or Squirt if you will, in the mouth. It came in a 5 part nipple and yes, the parts were TINY and go down the drain EASILY!!! But all the same he immediately got the idea and began feeding. Nothing like starving your child for 3 weeks, only to figure out this concept.
She also said she needed to refer us to another doctor because she felt Drake had more issues than she could handle. She began talking about different "syndromes". At the time, I had only heard of Downs Syndrome and began to panic. I think that was a moment of whirlwind when I realized things are far more serious than I originally understood.
Now I need to remind you that through all this Drake was crying approximately 20 hours a day. Of course The feeding was the first consideration of the culprit, only to find it didn't stop with a full belly.
Monday, January 21, 2008
Happy Birthday Baby Drake 08/24/05
The delivery was a c-section. Between the docs and ourselves, we thought it would be a better choice , not knowing how things would go with the "only baby in the world syndrome" delivery. Things went beautifully!! I think I even heard a sigh of relief in the room after Drake was born.
The first thing I noticed after they handed him to me was the shape of his ears. I said "somethings wrong with his ears!" They were the shape of little ruffled potato chips. I had never seen anything like them, cute, but different. The docs didn't say much about it. (I have since learned they seldom do)
Afterwards, Shane and the baby went off to do the first bath thing while I tried to enjoy my last few moments of rest and recovery. ( I had joyfully prepared for this moment since my first son "Grant" was a cesarean baby too.) After a while in recovery Dr.Dees, the pediatrician, came in to see me with an update. She told me that his ears had very small openings called aural atresia. The shape was also defected called microtia. At that moment I knew all wasn't well. Call it mothers instinct, call it paranoia or call it whatever you wish, but this was the moment I knew things were never going to be the same. I cried as they wheeled me to the room where everyone could come to celebrate in the birth. All I could do was cry every time someone asked me how we were. (maybe a little postpartum, maybe not) I think I stopped long enough to take a nap, just enough to wake and find Drake liked to cry too. I should have known he cried more than usual. Weren't they at least wait suppose to wait till you get home to start that?, not Drake. He wasn't feeding well either, but we were learning his ways the best we could. I did feel a little more confident with the second child, after all who can't deal with a child that cries every time you touch him? ( a little foreshadow for those interested)
The next day the pediatrician came in to tell us that Drake didn't pass his hearing screen. Shane and I still today laugh about how we talked that night saying"No problem, we can learn sign language!" Dr. Dees also mentioned his chin was slightly small. At the time we didn't think that was something to be too worried over. (they forgot to tell us he was considered "a poor feeder".) So four days later, we headed home to live happily ever after.
Sunday, January 20, 2008
Ultrasound City
At this point, I began going to Duke for ultrasounds apox. every 2-3 weeks. Since none of the doctors knew what to expect they offered a couple test to try and help see the chromosomes better. AT Mt.Sinai University in NY,there was one particular test that set us back several hundred dollars.We felt the need to try this to find out what we were dealing with to help us make the best decisions and know what to expect. (Little did we know that we would spend the next two years trying to figure this out.) This particular test called the CHG, was the most advanced test to see if there was any parts of the chromosome missing(called deletions) or extras(called duplicates). The results showed neither and gave us an 80% chance that there would be NO problems. ( What a plan GOD had for us!!!) Who wouldn't like to go to Vegas with those odds?So we proceeded to go to genetic counseling, even though it seems all I did was cry. The counselor was very reassuring and good at explaining that it was nothing we could have done to change this. I was worried "Did I take too many Advil or maybe I should have been better about keeping up with those damn BC pills". That wasn't the good part, you should have been there when she asked us " is there any chance you two are related?" Of course I replied" Yes, we are married." The counselor said,"No, I mean like cousin, sibling, etc." And yes, she has had all of the above imaginable.So after that I decided to make the best of our situation and try to research this rare problem all I could. How it happened, why this occurred, what did others look like that had such a chromosome abnormality, what was the life expectancy? Wondering what I found? NOT A THING, zilch, zero, nada, nothing. I kept forgetting that Drake was the ONLY one in the world with this particular chromosome abnormality. This seemed to be the beginning of finding out the extreme rareness of it all and everything isn't so cut and dryLet me go back a little bit and explain what exactly A Complexed Balanced Translocation is. In the world of chromosomes every one has 46. 23 from the mother, 23 from the father. At conception Drake's decided to rearrange them little selves differently (called denovoed). In a typical "translocation", it occurs with only two. It's sort of like two pens switching tops. The counselor said this happens quite often and people don't even realize it. As long as there is nothing missing or added there shouldn't be any problems.(that is where the 80% chance no problem came from) With Drake he has 3 chromosomes involved,#1,4,&14. With out a picture to show, these 3 little buggers mixed themselves up and put themselves back together again. Think of 3 pens broken in about 5 different places and while mix/matching taped back together.So the counseling continued throughout the pregnancy, just to say what great parents we are.(like we didn't know this) The Duke doctor held several Level 2 ultrasounds(really cool 3D pics). They wanted to keep an eye on his growth from his head to his toes. I held my breath every visit and every visit showed a perfect(which he is) baby boy. They even did an electrocardiogram on his heart. It seems a lot of people with chromosome problems have heart trouble. Not Drake, once again, perfect!With that sigh of relief, we were ready to have a baby!!!(keep in mind aprox. 20 weeks have gone by since all this started)Now don't get me wrong I cried myself to sleep several nights. And some say why would you want to know or it's better not having that stress on yourself and the baby. For me and Shane we wanted to know! We wanted to prepare and know the facts. Little did we know, how little we didn't know.But it made us feel better, It made us stronger together. I can look back now and still to this day know I would have done the same thing!!!!!!!!!!
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