Our little Silas is 6 WHOPPIN' MONTHS OLD! I can hardly believe it. So
proud of him and his sweet laugh and uber goober baby cheeks. He is such
a cute baby. Toadally hoppin' over that froggie of mine :) Thanks for
sharing this milestone with us.
Oh and.... happy 3 months breastfeeding to us too! More on this math soon ;)
Thursday, January 31, 2013
Resources & Support (from his caringbridge)
I often get questions from people about my son's condition from people
who obviously are masters at google and wikipedia. So, for all who may
be searching for answers, here are some better resources and supports
The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!
Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.
Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)
Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!
And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.
Hope you all have a great day and thanks for visiting!
The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!
Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.
Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)
Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!
And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.
Hope you all have a great day and thanks for visiting!
Wednesday, January 30, 2013
Sleep Deprivation & Tears (from his caringbridge)
4:30 AM- Slam head on nightstand trying to hit snooze on my phone. Oh right, it's EEG day! Ugh! Roll out of bed
6:30 AM- Get kids up. Pack lunches. Make breakfas
7:30 AM- realize the middle child with curly hair lost my keys, call mother in law, freak out, dig through dirty clothes basket, find keys
9:00 AM- Check In at OPSU at NHRMC FOR EEG.
10:00 AM- EEG COMPLETE
So, it was quite the day. Arriving late after a hectic morning at the house, not having my wallet (thankfully we have been there so often they don't usually need our ins. cards and such), and then nearly being hit by a car on the way to the hospital. I was actually happy when we were shown to the room and the electrodes were placed with little fan-fare from Silas. He did fuss a little. Thankfully, we had a well-experienced tech at the helm. Paul, our tech, had been doing this for about 20 years. It was interesting watching him stare at my son, then back at the screen, even if a bit alarming. I did ask him about what he saw, and he said *MOST of it looks like involuntary movement* but threw in the disclaimer about Dr Tennison, our neurologist, doing the reading and report. He told me Dr. Tennison usually has quick turn-around time and to call later today if I had not received results by 4pm. So I called, no results yet. Hopefully soon. You'll know when I know. As always, we wait and see...
Edited to add a few questions I was just asked twice by two different people:
What will the results answer?
A few possible answers we might get for our questions:
1) is his shakiness seizure activity
2) where in the brain are the abnormal movements coming from
3) does he have any abnormal brain wave activity that gives us any information about why his head is so small
6:30 AM- Get kids up. Pack lunches. Make breakfas
7:30 AM- realize the middle child with curly hair lost my keys, call mother in law, freak out, dig through dirty clothes basket, find keys
9:00 AM- Check In at OPSU at NHRMC FOR EEG.
10:00 AM- EEG COMPLETE
So, it was quite the day. Arriving late after a hectic morning at the house, not having my wallet (thankfully we have been there so often they don't usually need our ins. cards and such), and then nearly being hit by a car on the way to the hospital. I was actually happy when we were shown to the room and the electrodes were placed with little fan-fare from Silas. He did fuss a little. Thankfully, we had a well-experienced tech at the helm. Paul, our tech, had been doing this for about 20 years. It was interesting watching him stare at my son, then back at the screen, even if a bit alarming. I did ask him about what he saw, and he said *MOST of it looks like involuntary movement* but threw in the disclaimer about Dr Tennison, our neurologist, doing the reading and report. He told me Dr. Tennison usually has quick turn-around time and to call later today if I had not received results by 4pm. So I called, no results yet. Hopefully soon. You'll know when I know. As always, we wait and see...
Edited to add a few questions I was just asked twice by two different people:
What will the results answer?
A few possible answers we might get for our questions:
1) is his shakiness seizure activity
2) where in the brain are the abnormal movements coming from
3) does he have any abnormal brain wave activity that gives us any information about why his head is so small
Monday, January 28, 2013
"But His Head Doesnt Look Small" (from his caringbridge)
This is probably the comment I hear most often when I explain what the
term microcephaly means. Head appearance can be deceiving. Because of
how Drs measure the circumference of the head, many children who don't
physically appear to have smaller-than-average heads in fact do. Even
Silas' physical therapist had a difficult time seeing his "small head"
until I showed her a photograph of him with a typically developing baby
his age.
"But why does a small head matter?" comes in a close second. There is no way to measure the size or weight of the human brain while it is in the body. We can examine the structure, placement, size relative to other portions of the brain, proportionality overall, and even distinguish surface texture. A normally developing brain has ridges and groves that give it that funny wrinkled appearance we have all seen on models. Brain growth determines head growth. In fact, if the head is not growing, it is a sure bet neither is the brain. The growth of the brain is what CAUSES the head size to grow. Head circumference growth directly shows brain growth, ALWAYS. This is why you may also see microencephaly as part of Silas' diagnosis. Although, many physicians just use one or the other. Because we know Silas' head started out smaller than the average baby of his gestational age, is growing at a slower rate than typically developing babies, we also know the same is true for his brain
The next logical question usually follows: What does slow brain and head growth mean? How does it affect Silas
This may well be the most difficult and least conclusive question to answer. Brain growth accounts for a baby meeting milestones- like learning to eat, clap, roll over, sit up, walk- as well as emotional maturity, physical coordination, and intellectual ability. What we do know is that Silas has been slow to meet his milestones and required physical therapy help in this area and occupational therapy help to learn to feed properly. What we do not know and cannot predict is how the continued slow growth of his brain will effect him in the future. This effects every baby differently. There are children with small brains who are minimally effected and others who depend on their family for every aspect of daily living. Only time will reveal where on the spectrum Silas will fall.
We do have a few positive predictors to consider. One, physical therapy helped him catch up on his milestones. Two, his father has a smallish (about 5th%) head and is of normal inteligence. Three, he has been able to learn new skills with guidance. Four, he shows some signs of fine-motor development beginning (scratching, pointer to thumb reflex at random) which are precursors to later milestones.
So, how can you help? If you have the chance to play with Silas, use lots of varying positions for playing. He loves tummy time. Encourage him to try and reach for objects. Help him with supported sitting and give him a toy to hold. Talk to him, mimic his sounds, and let him try to mimic yours. Please do not give him food. He is not ready for this and cannot control his gag reflex which is a choking hazard. Love on him. Tickle him. Smile at him. He will probably smile back!
"But why does a small head matter?" comes in a close second. There is no way to measure the size or weight of the human brain while it is in the body. We can examine the structure, placement, size relative to other portions of the brain, proportionality overall, and even distinguish surface texture. A normally developing brain has ridges and groves that give it that funny wrinkled appearance we have all seen on models. Brain growth determines head growth. In fact, if the head is not growing, it is a sure bet neither is the brain. The growth of the brain is what CAUSES the head size to grow. Head circumference growth directly shows brain growth, ALWAYS. This is why you may also see microencephaly as part of Silas' diagnosis. Although, many physicians just use one or the other. Because we know Silas' head started out smaller than the average baby of his gestational age, is growing at a slower rate than typically developing babies, we also know the same is true for his brain
The next logical question usually follows: What does slow brain and head growth mean? How does it affect Silas
This may well be the most difficult and least conclusive question to answer. Brain growth accounts for a baby meeting milestones- like learning to eat, clap, roll over, sit up, walk- as well as emotional maturity, physical coordination, and intellectual ability. What we do know is that Silas has been slow to meet his milestones and required physical therapy help in this area and occupational therapy help to learn to feed properly. What we do not know and cannot predict is how the continued slow growth of his brain will effect him in the future. This effects every baby differently. There are children with small brains who are minimally effected and others who depend on their family for every aspect of daily living. Only time will reveal where on the spectrum Silas will fall.
We do have a few positive predictors to consider. One, physical therapy helped him catch up on his milestones. Two, his father has a smallish (about 5th%) head and is of normal inteligence. Three, he has been able to learn new skills with guidance. Four, he shows some signs of fine-motor development beginning (scratching, pointer to thumb reflex at random) which are precursors to later milestones.
So, how can you help? If you have the chance to play with Silas, use lots of varying positions for playing. He loves tummy time. Encourage him to try and reach for objects. Help him with supported sitting and give him a toy to hold. Talk to him, mimic his sounds, and let him try to mimic yours. Please do not give him food. He is not ready for this and cannot control his gag reflex which is a choking hazard. Love on him. Tickle him. Smile at him. He will probably smile back!
Sunday, January 27, 2013
Solving a Mystery (from his caringbridge)
One of the issues I am having with Silas lately is discerning what is
him having an off day and what is him having something that warrants a
medical opinion. As his mom, I distinguish every cry. I know if it's
hunger, fatigue, pain. But sometimes I'm not sure . Last night is a
perfect example
We had already had our night feeding. The girls were in bed. Silas was asleep. All of a sudden, he woke up with this piercing cry. Because of his microcephaly there are times he is shrill. Last night was one of those. I tried intercepting the cry with cuddling, changing, feeding, patting, investigating for too tight clothing or wrapped fingers, toes, etc in mommy's hair. No luck. It just kept on. After 30 minutes I was concerned enough to look up the vitaline number and consider calling, and in an instant he was quiet and acting happy
What gives? Did he just have a bad day or is it something invincible causing him pain? I don't know. I think this may be my biggest struggle. Not knowing what is wrong with him in those moments and all of my soothing techniques failing to help him. There is nothing that saddens me more than watching my child(ren) cry and being unable to help.
We had already had our night feeding. The girls were in bed. Silas was asleep. All of a sudden, he woke up with this piercing cry. Because of his microcephaly there are times he is shrill. Last night was one of those. I tried intercepting the cry with cuddling, changing, feeding, patting, investigating for too tight clothing or wrapped fingers, toes, etc in mommy's hair. No luck. It just kept on. After 30 minutes I was concerned enough to look up the vitaline number and consider calling, and in an instant he was quiet and acting happy
What gives? Did he just have a bad day or is it something invincible causing him pain? I don't know. I think this may be my biggest struggle. Not knowing what is wrong with him in those moments and all of my soothing techniques failing to help him. There is nothing that saddens me more than watching my child(ren) cry and being unable to help.
Saturday, January 26, 2013
Unpredictable: Neuro Consult Update (from his caringbridge)a"
I am sorry it has taken me so long to chronicle our appointment with Dr.
Tennison. Partly, I have just been busy with other appointments, partly
I have been trying to gather my thoughts. I am going to do this
chronologically
We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.
Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.
We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life
We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.
The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source
He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions
I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do
We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...
We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.
Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.
We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life
We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.
The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source
He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions
I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do
We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...
Wednesday, January 23, 2013
Another Day, Another Appointment (reposted from his caringbridge)
So, I have not updated on the big neurology appointment we had last Friday, but I promise to get to it tonight.
Today we saw the pediatrician about some sleep disturbances Silas has been experiencing, and while we don't think they are seizures, we also can't know with certainty without an EEG. So, we put that on the books for Jan 30th at 830AM. It's a sleep-deprived EEG so I have the joy of waking him at 430 am and trying to keep him awake until his EEG, and you know how they just LOVE to run behind! Wish us luck, good brain wave vibes, and SEE SOMETHING thoughts! I either want a *FOR SURE* yes or no! Nothing inconclusive PLEASE
Today we saw the pediatrician about some sleep disturbances Silas has been experiencing, and while we don't think they are seizures, we also can't know with certainty without an EEG. So, we put that on the books for Jan 30th at 830AM. It's a sleep-deprived EEG so I have the joy of waking him at 430 am and trying to keep him awake until his EEG, and you know how they just LOVE to run behind! Wish us luck, good brain wave vibes, and SEE SOMETHING thoughts! I either want a *FOR SURE* yes or no! Nothing inconclusive PLEASE
Wednesday, January 16, 2013
Twenty Questions (reposted from caringbridge)
Our Neurology consultation is less than 48 hours away
and I am reminded that I should make a list of questions for and about
my son, but I don't even know where to begin stringing coherent words
together. For anyone out there who may be reading this and have
experience in special needs or microcephaly, what are some of the
important questions to ask? What are some of the important things to
make sure the neurologist knows? Thanks in advance!
Monday, January 14, 2013
Food for Thought (reposted from his caringbridge)
One of my current battles with Silas's healthcare team right now is
whether or not to introduce him to solids. His physicians suggest it is
important because he has had delays. But after talking to other moms who
have babies and children with microcephaly, there are some unique
concerns for Silas
When Silas progressed from bottle feeding, it was not a perfect transition, but we were grateful to be past the ng tube and syringe feedings. We were assured he would become more efficient and proficient as he got used to the bottles, but he never did. He would drool milk out one side of his mouth. He made an awful clicking sound while bottlefeeding, and he drifted to sleep before the bottles were finished. It was all these signs that led us to Kacey Trout, the Occupational Therapist who noticed his lip ties and possible tongue tie. She gave us homework to improve the tightness in his lips and allow for a wider latch on the bottle. It worked, sort of, but he still had other struggles with his bottles. The sleepy feeding concerned me most
About 4 weeks after his bottle strike, which led to us learning to breastfeed, I left him with a bottle for family and went somewhere for a bit. My phone rang and I ended up having to go get him. He wouldn't take the bottle. At first we thought it was preference, but as I tried once a week for the next 4 weeks, it became quite apparent that not only did my son struggle with bottlefeeding still, but worse he had honestly forgotten the proper motions for his tongue. He didn't know what to do with that thing in his mouth! This is called regression
What am I getting at here? Because of Silas having a history of feeding difficulties and regressing and losing skills he is no longer using, starting solids could be very tricky. Many of the moms with children who have microcephaly said their children did not have an easy transition and struggled to learn to feed. Some even required feeding tubes because they could not take in full nutrition by mouth.
So, because I want to preserve breastfeeding for Silas, as it is the most nutritionally sound for the first year of life, I am taking the path of least resistance. I will not offer my son any solid foods unless he gives me cues that he desires them (picking them off my plate, mouthing them, etc). Silas and I will continue our feeding relationship and work on developmental milestones like holding a spoon, pincer grasp, and other food-related milestones in other ways. The goal will be to make it to 1 year before solid food becomes an important part of his life. This approach will offer Silas the easiest path to success in beginning solids and remove some of the worry from me over possible regression.
When Silas progressed from bottle feeding, it was not a perfect transition, but we were grateful to be past the ng tube and syringe feedings. We were assured he would become more efficient and proficient as he got used to the bottles, but he never did. He would drool milk out one side of his mouth. He made an awful clicking sound while bottlefeeding, and he drifted to sleep before the bottles were finished. It was all these signs that led us to Kacey Trout, the Occupational Therapist who noticed his lip ties and possible tongue tie. She gave us homework to improve the tightness in his lips and allow for a wider latch on the bottle. It worked, sort of, but he still had other struggles with his bottles. The sleepy feeding concerned me most
About 4 weeks after his bottle strike, which led to us learning to breastfeed, I left him with a bottle for family and went somewhere for a bit. My phone rang and I ended up having to go get him. He wouldn't take the bottle. At first we thought it was preference, but as I tried once a week for the next 4 weeks, it became quite apparent that not only did my son struggle with bottlefeeding still, but worse he had honestly forgotten the proper motions for his tongue. He didn't know what to do with that thing in his mouth! This is called regression
What am I getting at here? Because of Silas having a history of feeding difficulties and regressing and losing skills he is no longer using, starting solids could be very tricky. Many of the moms with children who have microcephaly said their children did not have an easy transition and struggled to learn to feed. Some even required feeding tubes because they could not take in full nutrition by mouth.
So, because I want to preserve breastfeeding for Silas, as it is the most nutritionally sound for the first year of life, I am taking the path of least resistance. I will not offer my son any solid foods unless he gives me cues that he desires them (picking them off my plate, mouthing them, etc). Silas and I will continue our feeding relationship and work on developmental milestones like holding a spoon, pincer grasp, and other food-related milestones in other ways. The goal will be to make it to 1 year before solid food becomes an important part of his life. This approach will offer Silas the easiest path to success in beginning solids and remove some of the worry from me over possible regression.
Sunday, January 13, 2013
World of Questions (reposted from caringbridge)
From the first ultrasound revealing his possible double
collecting system to his first broken cry in the operating room where he
was born, I knew something was unique about my son. I knew our journey
would be new, different, and that there would be struggles, but what I
did not know is just how many questions I would have.
In those first 48 hours my questions brought me to tears. Why can't I see him? Why can't he nurse? Is he going to be okay? It was difficult enough dealing with my own trauma from our emergency c-section, but the ceaseless concern and separation from my son was awful.
During those first days, we just were not sure why he was having so many struggles. He was acting like a 33/34 weeker, not the 36 week baby he was. The Pediatrician chalked it up to WWMS WHIMPY WHITE MALE SYNDROME, saying that boy babies tend to struggle more when early. And there was the trauma of my failed induction, finding out he was footling breech, and having the unplanned emergency c-section, plus all the magnesium sulfate I was given to prevent seizures from pre-eclampsia. So no one was certain why he couldn't feed or maintain his temperature or was having pulse-ox issues. What we did know is he needed to get better, so on day 5 the NICU staff came into our room and told me he was going downstairs to their unit. We were hours from discharge and Silas just wasn't getting better. It was time for further action. So that brought even more questions into our lives. When would he be coming home? Would he always need an NG tube? What was causing all this
When we got to go home a week later, he was taking milk from a bottle. We were happy with his progress and exuberant about our family being back together. Things were looking up.
It didn't last long, the period of no questions. Silas continued to struggle through his bottle feedings and wasn't progressing in milestones. We kept being told it was because he was early, that we had to consider his adjusted age, but he wasn't even holding his head up and he should have been able to do that, right?
As each new question came up, and each milestone passed without being met, I began to wonder if we would ever understand our son's struggle. Was he really so delayed from being 4 weeks early? I had doubts. His Pediatrician ordered Physical Therapy evaluation because of his feeding delays and apparent pain. The lactation consultant kept working with us to foster a good relationship there, but it was three months before we ever saw the fruit of that labor. There were nights I sat crying, holding a crying baby who was hungry but wouldn't eat for a reason I couldn't understand. I would watch as his hands tremored and clenched wondering if these were what infant seizures looked like, or I would cradle him and try to imagine him one day crawling, walking, speaking. But at three months old he still wasnt doing anything more than a month old baby, and I was becoming discouraged and so we started therapy, hoping it would help him along.
At his four-month checkup I heard the word microcephaly for the first time, and while it was terrifying to put a name to what may be delaying our son, it was also relieving to know it wasn't all in my head.
Today I still have questions and I probably always will. But as we get closer to his neurology consultation, I find myself asking what we might find out, what his future will hold, and hopeful that we are on the road to finding some answers to where this crazy road is heading.
In those first 48 hours my questions brought me to tears. Why can't I see him? Why can't he nurse? Is he going to be okay? It was difficult enough dealing with my own trauma from our emergency c-section, but the ceaseless concern and separation from my son was awful.
During those first days, we just were not sure why he was having so many struggles. He was acting like a 33/34 weeker, not the 36 week baby he was. The Pediatrician chalked it up to WWMS WHIMPY WHITE MALE SYNDROME, saying that boy babies tend to struggle more when early. And there was the trauma of my failed induction, finding out he was footling breech, and having the unplanned emergency c-section, plus all the magnesium sulfate I was given to prevent seizures from pre-eclampsia. So no one was certain why he couldn't feed or maintain his temperature or was having pulse-ox issues. What we did know is he needed to get better, so on day 5 the NICU staff came into our room and told me he was going downstairs to their unit. We were hours from discharge and Silas just wasn't getting better. It was time for further action. So that brought even more questions into our lives. When would he be coming home? Would he always need an NG tube? What was causing all this
When we got to go home a week later, he was taking milk from a bottle. We were happy with his progress and exuberant about our family being back together. Things were looking up.
It didn't last long, the period of no questions. Silas continued to struggle through his bottle feedings and wasn't progressing in milestones. We kept being told it was because he was early, that we had to consider his adjusted age, but he wasn't even holding his head up and he should have been able to do that, right?
As each new question came up, and each milestone passed without being met, I began to wonder if we would ever understand our son's struggle. Was he really so delayed from being 4 weeks early? I had doubts. His Pediatrician ordered Physical Therapy evaluation because of his feeding delays and apparent pain. The lactation consultant kept working with us to foster a good relationship there, but it was three months before we ever saw the fruit of that labor. There were nights I sat crying, holding a crying baby who was hungry but wouldn't eat for a reason I couldn't understand. I would watch as his hands tremored and clenched wondering if these were what infant seizures looked like, or I would cradle him and try to imagine him one day crawling, walking, speaking. But at three months old he still wasnt doing anything more than a month old baby, and I was becoming discouraged and so we started therapy, hoping it would help him along.
At his four-month checkup I heard the word microcephaly for the first time, and while it was terrifying to put a name to what may be delaying our son, it was also relieving to know it wasn't all in my head.
Today I still have questions and I probably always will. But as we get closer to his neurology consultation, I find myself asking what we might find out, what his future will hold, and hopeful that we are on the road to finding some answers to where this crazy road is heading.
Saturday, January 12, 2013
Running Ragged
I should have started this blog long ago, but I didn't. I should have, but something prevented me from doing so- whatever that something was, I do not know it's name. Either way, here I am trying to piece together the past almost six months into a coherent face for you all who are reading.
From the very beginning, Silas had struggles with breathing, body temperature regulation, feeding, blood sugar levels, and movement.
We knew when he was in the nursery, before moving the NICU, at the hospital that his kidney was dilated and he had GERD. He has had three ultrasounds on the kidney and a barium swallow test for the GERD. He sees both a urologist and gastroenterologist for the GERD and hydronephrosis.
He bounced between NG tube feedings and syringe feedings two or three times before progressing to taking food by bottle. Even after he was home from the hospital and gaining weight, he did not progress to latching at breast the way we assumed he would. Six weeks came and went with no progress. We saw an ENT for a possible tongue tie, a P.T. for a possible torticollis affecting his ability to position properly. He was miserable. It was not until he was three months old that he was able to breastfeed and that came about because he striked his bottles and we landed in the hospital for dehydration monitoring. I firmly believe if that had not occurred, we would not be breastfeeding today. I am so grateful for the Lactation Consultants locally who worked with us to get Silas where he needed to be. They offered countless hours of encouragement, support, and never gave up on us, even when every thing we tried seemed to be another dead end. We finally got there, and when we did, we had a whole team of people celebrating with us!
Suck, swallow, breathe- some of the most vital abilities a baby needs and my son couldn't coordinate them well at all in those first weeks. The NICU provided him with proper training to regulate his swallowing and sucking, but the breathing part was something he couldn't be taught. So, we worried and watched round the clock to make sure he didn't show any signs of breathing difficulties. Those first few days at home with him, I was on the NICU phone line with a nurse daily. Something about having a NICU baby makes you feel like a first time parent all over again. We finally grew past these difficulties around 6 weeks and boy did I feel good about that.
Since birth Silas has had tremors in his arms and legs. We knew these were neurological symptoms, but had no idea what they pointed to. This has continued throughout his infancy. We see neurology later this month for a consultation. More on that later.
Silas also has had severe delay from birth onward. At first we thought it was just him being a little early but when all our attempts to get him nursing failed and his stiffness, morrow reflex, and tremors did not subside we were referred to a wonderful occupational and physical therapist for intervention. Physical therapy has been a God-send. Silas was very behind when he began meeting with Renee. Thankfully now, almost three months later he is current on most of his age-adjusted milestones.
My weeks are slammed with Dr visits of one kind or another. I always feel like Im stretched so thin the holes are beginning to show. My hair is a mess. My clothes are wrinkled. My eyelids are so droopy I could trip over them, but I am doing what is best for my baby. I am being his advocate and getting him the help he needs.Dont ever give up on your child- you are the only voice they have.
From the very beginning, Silas had struggles with breathing, body temperature regulation, feeding, blood sugar levels, and movement.
We knew when he was in the nursery, before moving the NICU, at the hospital that his kidney was dilated and he had GERD. He has had three ultrasounds on the kidney and a barium swallow test for the GERD. He sees both a urologist and gastroenterologist for the GERD and hydronephrosis.
He bounced between NG tube feedings and syringe feedings two or three times before progressing to taking food by bottle. Even after he was home from the hospital and gaining weight, he did not progress to latching at breast the way we assumed he would. Six weeks came and went with no progress. We saw an ENT for a possible tongue tie, a P.T. for a possible torticollis affecting his ability to position properly. He was miserable. It was not until he was three months old that he was able to breastfeed and that came about because he striked his bottles and we landed in the hospital for dehydration monitoring. I firmly believe if that had not occurred, we would not be breastfeeding today. I am so grateful for the Lactation Consultants locally who worked with us to get Silas where he needed to be. They offered countless hours of encouragement, support, and never gave up on us, even when every thing we tried seemed to be another dead end. We finally got there, and when we did, we had a whole team of people celebrating with us!
Suck, swallow, breathe- some of the most vital abilities a baby needs and my son couldn't coordinate them well at all in those first weeks. The NICU provided him with proper training to regulate his swallowing and sucking, but the breathing part was something he couldn't be taught. So, we worried and watched round the clock to make sure he didn't show any signs of breathing difficulties. Those first few days at home with him, I was on the NICU phone line with a nurse daily. Something about having a NICU baby makes you feel like a first time parent all over again. We finally grew past these difficulties around 6 weeks and boy did I feel good about that.
Since birth Silas has had tremors in his arms and legs. We knew these were neurological symptoms, but had no idea what they pointed to. This has continued throughout his infancy. We see neurology later this month for a consultation. More on that later.
Silas also has had severe delay from birth onward. At first we thought it was just him being a little early but when all our attempts to get him nursing failed and his stiffness, morrow reflex, and tremors did not subside we were referred to a wonderful occupational and physical therapist for intervention. Physical therapy has been a God-send. Silas was very behind when he began meeting with Renee. Thankfully now, almost three months later he is current on most of his age-adjusted milestones.
My weeks are slammed with Dr visits of one kind or another. I always feel like Im stretched so thin the holes are beginning to show. My hair is a mess. My clothes are wrinkled. My eyelids are so droopy I could trip over them, but I am doing what is best for my baby. I am being his advocate and getting him the help he needs.Dont ever give up on your child- you are the only voice they have.
What is Microcephaly?
Microcephaly or "small head" occurs in about 2% of the population. It can be caused by genetics, syndromes, or injuries. The current standard for microcephaly is a head circumference measuring 3 or more deviations below normal on the growth chart. Microcephaly touches each person differently, so the variation of signs and symptoms is vast. Some microcephalic children have no signifiers other than the below-average head and brain size. Others may be severely effected and require constant care and supervision. No doctor can predict the person's quality of life, struggles, or health concerns for the future. It truly is a wait-and-see disorder. Regardless of the severity of the disorder, those with microcephaly are amazing and beautiful. They deserve every happiness and provision possible to ensure they have the best life available to them. Love them, cherish them, and know that no matter what, they are still the same sweet, loving, fun people you know them to be.
The Nitty Gritty
So, everyone wants to know the statistics.
Here is what we know:
Silas has the following conditions - microcephaly, hydronephrosis, GERD, tremors, epicanthal folds, low set, misshaped (elf) ears, high-pitched broken cry, feeding difficulties (NG, syringe, bottle, finally breast), mild developmental delays.
Here is what we aren't sure of:
Possible seizure-like activity, cause of microcephaly?
Birth Stats:
Current Stats:
Here is what we know:
Silas has the following conditions - microcephaly, hydronephrosis, GERD, tremors, epicanthal folds, low set, misshaped (elf) ears, high-pitched broken cry, feeding difficulties (NG, syringe, bottle, finally breast), mild developmental delays.
Here is what we aren't sure of:
Possible seizure-like activity, cause of microcephaly?
Birth Stats:
Current Stats:
How I Met My Son
After enduring an awful pregnancy with
complication after complication, labor and delivery visits piled one on
top of the other, and more close calls than I care to recount, we were
finally admitted to antepartum for hospital bed rest.
It was a beautiful, hot, and stormy Friday morning when I hobbled into the triage bay one last time. Every thing was wrong. I was puking, my head was screaming, everything hurt. I just wanted some relief from the pain, but what I received instead was a hospital stay that ended with my son being forced into the world before he was ready.
The plan initially was to wait it out in the hospital til 37 weeks and then deliver via induction, but I never made it past 36 weeks. Monday morning arrived and with it the announcement that I was being induced. I've been induced before , but no one told me what this induction would be like, no one prepared me for the road ahead.
It was some time after noon when I made it to my delivery and labor room. When I get there, I learn that I will have to labor flat on my back. Immediately the tears begin falling, my fear nearly strangles my breath as I try to ask to speak to the doctor about what they are planning. I have to be on magnesium sulfate, the Dr tells me. And that means a catheter and monitors continuously and a very LONG labor process. I make peace with the medication and bargain for not getting a catheter until I cannot walk to the bathroom on my own. l watch as they slam my body full of poison, at least it feels like poison. My face is on fire. The cyatek, which isn't approved by the FDA for use in hospitals for laboring women (but is used for laboring animals), goes three rounds before they decide to move on to the next phase. Sometime around midnight they start me on pitocin. I don't progress as planned. They don't ultrasound as planned. Tuesday afternoon, almost exactly 24 hours later, my water breaks. Another unplanned occurrence.
We are reeling as the Dr checks me and discovers my son's foot lodged in my cervix. Not only is he not head down, but with my water now not in tact, they won't even try to turn him. My failed labor induction becomes an emergency c-section. As I lay there waiting for the Dr to confirm there is no other option, I am frozen with fear. There are no words for how I felt lying there, lights blaring as people rush around me, asking who they can call, if I am alone, where my husband is and when he will arrive. Someone comes in to shave and prep me, a most horrendous experience. The catheter goes in. The phone rings. I answer. A friend is on her way until my spouse can arrive.
I am wheeled back to the OR, alone, with my friend standing in the hallway. My husband is still not at the hospital. I am shaking, half naked, completely a wreck, on an operating table in a cold, sterile room with people all around me. The spinal tap goes in, and my body, nearly lifeless, is positioned on a table. My legs still feel as if they are bent though they assure me they are straight. I feel exposed. though I am draped.
Finally, I see my husband entering the room, his gown, cap, shoe covers, gloves, all there. He is sterile too. The realization that my baby will be born in this cold, unfeeling room, with lights blaring on my open body is too much. I focus on trying to breathe. On feeling my husbands hand through the glove, on the sound of his voice and the glimmer in his eyes. I don't know if they are tears or joy. I only know that he is with me now, and he is speaking. I listen as the blades begin. I talk through the whole procedure. That's what they call it. A surgery. I talk. I talk about how I cant wait to meet the baby, about how much I love my spouse, about how weird everything feels. I talk until I hear my baby, a tiny weak cry, ushered from his lungs, and then I know.
He is not ready. Before that moment there is still some hope that he will be perfect and healthy and ready to meet the world, but that wimpy cry shatters the light in the room. I feel darkness all around. Everything is silent. The Doctors have stopped speaking, though they continue working, the team assembled around my son, out of my line of sight, works hard to rouse him. His dad is called over. He cuts the cord. The baby is swaddled and passed to dad, who brings him over to my head, where I can glimpse his sleeping form. He is not rosy, but rather some pale shade of pinkish blue. I'm told his foot is bruised ad swollen. My heart aches for him. He will go to the nursery. Dad goes with him.
They stitch me up. I go to recovery. I am given ice chips. They check me. I am okay. I go back to my delivery room. I have to endure another 12 hours of magnesium. Around 3am I am placed in a recover y room. I have compression socks as I cannot walk yet. I have not seen my baby. I cry and ask for him. They cannot give him to me. He is not able to come out of the nursery. He is not able to stay warm. he is not eating well. I cannot nurse him yet. I have to be able to walk and do things first.
Morning comes. I eat. I keep it down. I am forced to stand and walk. I walk to the nursery. I sit, and cry, beside my son, and I hold his tiny fingers. I massage his black and blue foot. I talk to him through my tears. I cannot take him out of the warmer. He is having breathing trouble. They watch him. Some time the next day, I can hold him. Finally. I am pumping for him, but it is not much. Just a little for now. It's something I can do when so much else is out of my control .
He makes progress and finally he is released to our room, but the next day, he is sent to NICU . We follow. Seeing him there in the isolette with all the wires is torture. But they assure me when he is warm, they will help us hold him, care for him, love him. And we do.
Five days later, Wednesday, a week after his birth and one day, we are home. It is still no easy thing, as he still struggles, and I still fight fear, but my son is here. He is lying next to me, sleeping. His five pound body barely makes a dent in my mattress. But my heart brims with joy and sadness.
Joy for his life and for his beauty, sadness for all the shattered expectations. Perhaps it hurts more because we likely will never have another, or because some day, this story will be part of his life, part of the history of how he came to be, and I somehow wish I could change it for him. I wish I could make it more beautiful, more like him, my peaceful frog prince, but I cannot. I can only take comfort knowing, that out of something rather unlovely, a beautiful child thrives. I met my son in fear, embraced my son in hope, and will raise him in love.
*** And then the following day I went back and added the positives I could think of...***
ONE... my husband was a GREAT support during my c-section. He talked to me through the whole thing.And I remember looking in his eyes after asking the Dr if I was going to die.. and knowing that it was going to be okay. His voice was all I needed to hear. I wouldnt have made it through it without him there....
TWO... my doula was GREAT with heloping me cope with the pitocin and magnesium. She rubbed my feet, massaged my back, brought me cool cloths for my face, and reminded me to change positions. She helped me to the bathroom, and probably saw more of me than anyone ever needed to, but still was so sweet and reassuring even in my terrified state.
THREE... my friend Tesa was lots of fun, which was a good distraction. We all talked and laughed through most of the induction attempt. She reminded me that birth is supposed to be lighthearted, which is just how i HAD hoped it would be... and even though it didnt turn out to be tht way, I was able to enjoy most of my induction and stay relatively peaceful even though I felt terrible and scared beyond belief....
FOUR... seeing my son... I cried. He was beautiful, even if he wasnt the perfect color. He made faces at me, and I think I even saw his eyes one second before they took him away. I stroked his cheek, and hoped it was enough love to get him to fight ... and it was...
FIVE... God provided the right person for each of my shocks during the process.
Vanessa called me just moments after I was told I was having an emergency c-section and she came to the hospital to sit with me while my husband arrived. I was a wreck-- she'll tell you. She had been through a c-section with the twins, and was able to tell me it wasn't all terrible.
Dawn showed up in the middle of my finding out Silas was being admitted to NICU. We had been prepping for discharge the following day. She had been through a NICU experience, and helped me make sense of my world at that moment.
So thankful for God's hand on us... in all these ways... It still hurts to remember it all, but the good part is that my son is beautiful, mostly healthy, and growing. Maybe it wasn't how I planned it. Maybe it wasn't even how God intended it, but He worked it all out for good. Through every obstacle we faced, we have overcome.
It was a beautiful, hot, and stormy Friday morning when I hobbled into the triage bay one last time. Every thing was wrong. I was puking, my head was screaming, everything hurt. I just wanted some relief from the pain, but what I received instead was a hospital stay that ended with my son being forced into the world before he was ready.
The plan initially was to wait it out in the hospital til 37 weeks and then deliver via induction, but I never made it past 36 weeks. Monday morning arrived and with it the announcement that I was being induced. I've been induced before , but no one told me what this induction would be like, no one prepared me for the road ahead.
It was some time after noon when I made it to my delivery and labor room. When I get there, I learn that I will have to labor flat on my back. Immediately the tears begin falling, my fear nearly strangles my breath as I try to ask to speak to the doctor about what they are planning. I have to be on magnesium sulfate, the Dr tells me. And that means a catheter and monitors continuously and a very LONG labor process. I make peace with the medication and bargain for not getting a catheter until I cannot walk to the bathroom on my own. l watch as they slam my body full of poison, at least it feels like poison. My face is on fire. The cyatek, which isn't approved by the FDA for use in hospitals for laboring women (but is used for laboring animals), goes three rounds before they decide to move on to the next phase. Sometime around midnight they start me on pitocin. I don't progress as planned. They don't ultrasound as planned. Tuesday afternoon, almost exactly 24 hours later, my water breaks. Another unplanned occurrence.
We are reeling as the Dr checks me and discovers my son's foot lodged in my cervix. Not only is he not head down, but with my water now not in tact, they won't even try to turn him. My failed labor induction becomes an emergency c-section. As I lay there waiting for the Dr to confirm there is no other option, I am frozen with fear. There are no words for how I felt lying there, lights blaring as people rush around me, asking who they can call, if I am alone, where my husband is and when he will arrive. Someone comes in to shave and prep me, a most horrendous experience. The catheter goes in. The phone rings. I answer. A friend is on her way until my spouse can arrive.
I am wheeled back to the OR, alone, with my friend standing in the hallway. My husband is still not at the hospital. I am shaking, half naked, completely a wreck, on an operating table in a cold, sterile room with people all around me. The spinal tap goes in, and my body, nearly lifeless, is positioned on a table. My legs still feel as if they are bent though they assure me they are straight. I feel exposed. though I am draped.
Finally, I see my husband entering the room, his gown, cap, shoe covers, gloves, all there. He is sterile too. The realization that my baby will be born in this cold, unfeeling room, with lights blaring on my open body is too much. I focus on trying to breathe. On feeling my husbands hand through the glove, on the sound of his voice and the glimmer in his eyes. I don't know if they are tears or joy. I only know that he is with me now, and he is speaking. I listen as the blades begin. I talk through the whole procedure. That's what they call it. A surgery. I talk. I talk about how I cant wait to meet the baby, about how much I love my spouse, about how weird everything feels. I talk until I hear my baby, a tiny weak cry, ushered from his lungs, and then I know.
He is not ready. Before that moment there is still some hope that he will be perfect and healthy and ready to meet the world, but that wimpy cry shatters the light in the room. I feel darkness all around. Everything is silent. The Doctors have stopped speaking, though they continue working, the team assembled around my son, out of my line of sight, works hard to rouse him. His dad is called over. He cuts the cord. The baby is swaddled and passed to dad, who brings him over to my head, where I can glimpse his sleeping form. He is not rosy, but rather some pale shade of pinkish blue. I'm told his foot is bruised ad swollen. My heart aches for him. He will go to the nursery. Dad goes with him.
They stitch me up. I go to recovery. I am given ice chips. They check me. I am okay. I go back to my delivery room. I have to endure another 12 hours of magnesium. Around 3am I am placed in a recover y room. I have compression socks as I cannot walk yet. I have not seen my baby. I cry and ask for him. They cannot give him to me. He is not able to come out of the nursery. He is not able to stay warm. he is not eating well. I cannot nurse him yet. I have to be able to walk and do things first.
Morning comes. I eat. I keep it down. I am forced to stand and walk. I walk to the nursery. I sit, and cry, beside my son, and I hold his tiny fingers. I massage his black and blue foot. I talk to him through my tears. I cannot take him out of the warmer. He is having breathing trouble. They watch him. Some time the next day, I can hold him. Finally. I am pumping for him, but it is not much. Just a little for now. It's something I can do when so much else is out of my control .
He makes progress and finally he is released to our room, but the next day, he is sent to NICU . We follow. Seeing him there in the isolette with all the wires is torture. But they assure me when he is warm, they will help us hold him, care for him, love him. And we do.
Five days later, Wednesday, a week after his birth and one day, we are home. It is still no easy thing, as he still struggles, and I still fight fear, but my son is here. He is lying next to me, sleeping. His five pound body barely makes a dent in my mattress. But my heart brims with joy and sadness.
Joy for his life and for his beauty, sadness for all the shattered expectations. Perhaps it hurts more because we likely will never have another, or because some day, this story will be part of his life, part of the history of how he came to be, and I somehow wish I could change it for him. I wish I could make it more beautiful, more like him, my peaceful frog prince, but I cannot. I can only take comfort knowing, that out of something rather unlovely, a beautiful child thrives. I met my son in fear, embraced my son in hope, and will raise him in love.
*** And then the following day I went back and added the positives I could think of...***
ONE... my husband was a GREAT support during my c-section. He talked to me through the whole thing.And I remember looking in his eyes after asking the Dr if I was going to die.. and knowing that it was going to be okay. His voice was all I needed to hear. I wouldnt have made it through it without him there....
TWO... my doula was GREAT with heloping me cope with the pitocin and magnesium. She rubbed my feet, massaged my back, brought me cool cloths for my face, and reminded me to change positions. She helped me to the bathroom, and probably saw more of me than anyone ever needed to, but still was so sweet and reassuring even in my terrified state.
THREE... my friend Tesa was lots of fun, which was a good distraction. We all talked and laughed through most of the induction attempt. She reminded me that birth is supposed to be lighthearted, which is just how i HAD hoped it would be... and even though it didnt turn out to be tht way, I was able to enjoy most of my induction and stay relatively peaceful even though I felt terrible and scared beyond belief....
FOUR... seeing my son... I cried. He was beautiful, even if he wasnt the perfect color. He made faces at me, and I think I even saw his eyes one second before they took him away. I stroked his cheek, and hoped it was enough love to get him to fight ... and it was...
FIVE... God provided the right person for each of my shocks during the process.
Vanessa called me just moments after I was told I was having an emergency c-section and she came to the hospital to sit with me while my husband arrived. I was a wreck-- she'll tell you. She had been through a c-section with the twins, and was able to tell me it wasn't all terrible.
Dawn showed up in the middle of my finding out Silas was being admitted to NICU. We had been prepping for discharge the following day. She had been through a NICU experience, and helped me make sense of my world at that moment.
So thankful for God's hand on us... in all these ways... It still hurts to remember it all, but the good part is that my son is beautiful, mostly healthy, and growing. Maybe it wasn't how I planned it. Maybe it wasn't even how God intended it, but He worked it all out for good. Through every obstacle we faced, we have overcome.
Hello, Micro (from his caringbridge site)
Hello, Micro.
"Im concerned about Silas' head size" the rotund Dr said over his thick-rimmed spectacles. His voice still bubbly as he swayed my son in his arms. "It's not growing well, slower than average and it's very small."
I remember asking what that meant, what the possible causes were. The words he threw back at me were all scary, terrifying. Tumors. Brain Damage. Syndromes. "I'd like to schedule an MRI. I could do an ultrasound but they would likely just say it was inconclusive and ask for the MRI anyway, so we can step over them."
I drove home ith his words slamming around my head. "Silas has microcephaly. Hopefully the MRI will give us an idea of why, but it might not."
The call came later that day, scheduling the MRI for my 4 month old son. When the scheduling nurse started going over the rules and precautions for the procedure I about lost it. "You want my four month old baby who has struggled with eating all his life to go how long without any nutrition?" I nearly slammed the phone in her ear, but instead I said I understood and vowed to do some research when I had a minute.
The MRI went well. There were not any complications, but I was a wreck. I was there the first and last two hours alone. They had to fully sedate Silas, which meant intubation to preserve his airway. He looked awful when he was coming to, but he did well and we were on our way home shortly after coming to the recovery room. I had no sooner unloaded the car when the results came in on the phone.
The MRI showed a normally structured but very small brain. Everything looked normal. So, Silas' microcephaly was not caused by a brain injury, stroke, or trauma. He had no tumors or missing pieces. Those were all good things. Tears of relief slid down my cheek as I hung up the phone. But then the fact that we were no closer to answers than before hit me, and I felt ache all over again. Thats the struggle, the unanswered questions.
So here we are, waiting on his neurology consultation to discuss further testing, go over his complete medical history, and try yet again to find answers to the burning question: What is causing his brain to not grow the way it should? Is his microcephaly genetic, part of a syndrome, or something unexplainable? What can we expect for the future?
His neurology appointment is the 18th of January 2013. I will do my best to update as soon as we know something or have a plan in place. Thanks for the thougts, prayers, words of encouragement, and taking the time to share in our journey. Be blessed and amazed!
Friday, January 11, 2013
Thursday, January 10, 2013
Subscribe to:
Posts (Atom)