Friday, July 19, 2013
So it happened today-the total loss of any false perception of privacy that I was clinging to. I closed the door to take a shower. I was in the shower. Then the door opens, and in comes Michelle. Fine, save time, resources, whatever. She jumps into the shower with me and we get soaped up. Then, the curtain gets pulled back and two little arms pop over the edge of the tub, followed quickly by the cutest little face with the biggest smile. It is hard to be irritated that I will no longer have ANY PRIVACY for at least the next two years, when he smiles so big, like he just won the championship round of hide-and-seek. I mean, he did creep all the way to the bathroom, which for him is akin to an inch worm crossing a football field. He did find us, pull himself up to his knees and pull the curtain back all by his big boy self. WHERE HAS MY BABY GONE? I guess it followed my privacy- out the door.
A little about us
I have tried this once before, and it didn't take. Things have changed A LOT since then, so I thought I would give it the old college try.
Quick intro just in case someone stumbles across this and doesn't know me. I am a single mom to two wonderful children, Michelle and Justin. They are the reason I get up in the morning (really..."Mom, I'm hungry"). NO, well, yes, but I do love them with every fiber of my being. I would not change anything about being a mom to either one of them for an instant. Which is kind of what brings me around to why I am trying this blog thing again. To network as it were. Michelle has juvenile rheumatoid arthritis. It is now in remission, but when she was flaring it was the scariest thing I had ever faced. Three months of continuous high fevers and constant pain for my little girl, with no answers. I did not even know kids could get arthritis! But, like I said, she is now in remission, and hopefully will stay that way for a long long time, maybe forever!
And then there were two...
Justin, the newest addition to my happy little family. His story started rocky and has not seen fit to even itself out. He is my constant reminder from God that I need to stop doubting in God's love, grace, and power in my life. Justin came about as a result of a date rape. I won't go into details much but say that forgiveness is hard to give, but it is not given for the person who needs the forgiving, but the person doing the forgiving. At my initial screening test results they came back with some very bad news. The kind where the doctor walks in and the look on his face makes you sit down and say "oh shit." I was told that there was a 75% chance that the fetus had Trisomy 18 and a 50% chance that the fetus had Down's Syndrome, based on the blood work. They would like me to see a perinatologist as soon as possible, and would like an ultrasound done that day. As I am getting the ultrasound done, the tech asks why I am getting one done so early and I tell her what the doctor just told me...and she stops talking. Not a good sign. Anyway, I am offered a pregnancy "termination" if that is what I desire as "Trisome 18 is not compatible with life."
Now, I am not going to stomp on anyone for their beliefs, but as for me, once I saw the heart beat at 8 weeks, the deal was sealed. Planned or not, there was a baby in there, and it was in God's hands whether or not this baby was going to live. So, I went to my appointments, and got my ultrasounds. And got very sick. I found out 2 days before my birthday- after a very painful amniocentesis, that I had a "genetically perfect boy." Thank God I had not "terminated" when I could have! I ended up getting hospitalized 9 different times throughout the pregnancy for different issues, mostly dehydration and low potassium due to chronic migraines leading to emisus. I had polyhydramnios, and had to have NSTs for the last trimester. They also found that he had an enlarged right cranial ventricle and very large head at the last perinatologist appointment at 6 months. I started having contractions at 30 weeks, they were unable to stop them, but they were unproductive, just uncomfortable! Then, my blood pressure started climbing. And climbing. And climbing. I finally got induces at 38 weeks 5 days, measuring 48 centimeters!!! Yes, I was miserable. Things were fine, until Justin decided he didn't want to go towards the light! He would NOT drop into the canal, I would not dilate, and then he started decelling. I ended up having an emergency C-section.
Now, I have not used street drugs, and if I ever had a hankering to, this event cured me! They used Ketamine to anesthetize me as I had a history of a failed epidural in my past pregnancy, and they didn't want to take that chance with a C-section (Thank you!). The hallucinations that I had while delivering Justin cured me of ever ever wanting to use any mind altering chemicals, ever!
He was BIG, 9lbs, 9ounces. Then he had to spend 3 days in NICU for blood sugars and a suspected infection. He also had a PDA they discovered, and yes, the ventricle was indeed still enlarged.
Fast forward a bit...PDA resolved itself by 6 months. ventricle not growing, no mid line shift, not so large as to cause concern, just bigger than left and bigger than average. At 2 months I started noticing some delays. At 4 months, the pediatrician finally agreed and had him evaluated. All sorts of delays, as much as you can test in a 4 month old. So the therapies start, OT, PT, and a teacher. Then I notice that my formerly fat baby is not so much fat. And I start picking, and being told not to worry. Mind you, I wasn't exactly new at this. I hava a daughter who is 5.5 years older! Finally, when the growth chart flat lines they do a swallow study. diagnosis-dysphasia. Fine, thicken his foods, but STILL not doing anything, I am still worried and being ignored. And then he loses weight. Finally they send him for a feeding tube. For 4 months he never got above 15 pounds, got down right skinny and they thought I was just being an overly worried mom! Well, he got the tube in, and has gained weight like a champ! As a matter of fact, we recently tried to see if he could do well without the feeding tube...not so much. He lost ove a pound in 9 days! The consolidation? He gained it all back, plus some in 5 days when we put it back in.
It is an NG tube. I am sure if I can hack it at doing the blog more and better this time there will be more on it, but for now I will say it is the thing that I hate and love at the same time. Justin has a hypersensitive gag reflex, combine that with the open sphyncter from the feeding tube and I get puked on...a lot...sometimes multiple times a day...and I do...not...like...puke. But I LOVE my son, and I would do anything for him, including learn how to safely shove 30 cm of rubber hose up his tiny little nose and tape it to his precious little face, "ruining" all baby pics. so that he can have those cute little fat rolls that all healthy babies should have. And get puked on multiple times a day, because that is what he does when he has a good cry, or cough, or feels like it, or I just showered, or just gave him a bath, or any and all combinations of those.
And final little insert in this entry...a MAJOR reason for the networking. (Always save the best for last, right?) This is a little "laundry list" of Justin's diagnoses.
*hypotonia
*macrocephaly
*FTT
*developmentally delayed
*eczema
*PDA (since resolved)
*hydrocephalus
*dysphagia
*hypersensitive gag reflex
*"unique cranial facial formations"
And the coolest thing about him, proof that he is one in a billion and why I want to network. We got genetic testing done, to see if we could find the cause of this set of issues that he has. As it would turn out, and is so very appra pro for my life, he DOES have chromosomal issues. Two duplications on the X chromosome. The first one is one that the doctor's have seen before, and they know that it has nothing to do with any of his issues. The second duplication- THERE IS NOTHING WRITTEN ABOUT THIS DUPLICATION IN ANY MEDICAL LITERATURE IN THE WORLD, THAT THEY KNOW OF!!! Now, if these same genes were deleted as opposed to duplicated my son would have FG syndrome, but they're not. He has a duplication, not a deletion. And since there is no literature, they can tell me nothing. Now, when I heard this I laughed. Because, like I said, this is right on track with my life. NOTHING goes like it is supposed to, nothing. Why would my children be any different? I am not saying that in a negative way in the least. I like that I am not "normal." That I am a unique individual and can not and will not be shoved into any one size fits all mold. The problem is, in situations like this, it gets a little difficult figuring things out when you tread ground that no one, supposedly has tread before.
So, if you know of anyone who has, or knows someone who has, or has a cousin or friend or whatever whose situation sounds similar, please, get us in touch. Let us CREATE the literature if there is none out there.
Quick intro just in case someone stumbles across this and doesn't know me. I am a single mom to two wonderful children, Michelle and Justin. They are the reason I get up in the morning (really..."Mom, I'm hungry"). NO, well, yes, but I do love them with every fiber of my being. I would not change anything about being a mom to either one of them for an instant. Which is kind of what brings me around to why I am trying this blog thing again. To network as it were. Michelle has juvenile rheumatoid arthritis. It is now in remission, but when she was flaring it was the scariest thing I had ever faced. Three months of continuous high fevers and constant pain for my little girl, with no answers. I did not even know kids could get arthritis! But, like I said, she is now in remission, and hopefully will stay that way for a long long time, maybe forever!
And then there were two...
Justin, the newest addition to my happy little family. His story started rocky and has not seen fit to even itself out. He is my constant reminder from God that I need to stop doubting in God's love, grace, and power in my life. Justin came about as a result of a date rape. I won't go into details much but say that forgiveness is hard to give, but it is not given for the person who needs the forgiving, but the person doing the forgiving. At my initial screening test results they came back with some very bad news. The kind where the doctor walks in and the look on his face makes you sit down and say "oh shit." I was told that there was a 75% chance that the fetus had Trisomy 18 and a 50% chance that the fetus had Down's Syndrome, based on the blood work. They would like me to see a perinatologist as soon as possible, and would like an ultrasound done that day. As I am getting the ultrasound done, the tech asks why I am getting one done so early and I tell her what the doctor just told me...and she stops talking. Not a good sign. Anyway, I am offered a pregnancy "termination" if that is what I desire as "Trisome 18 is not compatible with life."
Now, I am not going to stomp on anyone for their beliefs, but as for me, once I saw the heart beat at 8 weeks, the deal was sealed. Planned or not, there was a baby in there, and it was in God's hands whether or not this baby was going to live. So, I went to my appointments, and got my ultrasounds. And got very sick. I found out 2 days before my birthday- after a very painful amniocentesis, that I had a "genetically perfect boy." Thank God I had not "terminated" when I could have! I ended up getting hospitalized 9 different times throughout the pregnancy for different issues, mostly dehydration and low potassium due to chronic migraines leading to emisus. I had polyhydramnios, and had to have NSTs for the last trimester. They also found that he had an enlarged right cranial ventricle and very large head at the last perinatologist appointment at 6 months. I started having contractions at 30 weeks, they were unable to stop them, but they were unproductive, just uncomfortable! Then, my blood pressure started climbing. And climbing. And climbing. I finally got induces at 38 weeks 5 days, measuring 48 centimeters!!! Yes, I was miserable. Things were fine, until Justin decided he didn't want to go towards the light! He would NOT drop into the canal, I would not dilate, and then he started decelling. I ended up having an emergency C-section.
Now, I have not used street drugs, and if I ever had a hankering to, this event cured me! They used Ketamine to anesthetize me as I had a history of a failed epidural in my past pregnancy, and they didn't want to take that chance with a C-section (Thank you!). The hallucinations that I had while delivering Justin cured me of ever ever wanting to use any mind altering chemicals, ever!
He was BIG, 9lbs, 9ounces. Then he had to spend 3 days in NICU for blood sugars and a suspected infection. He also had a PDA they discovered, and yes, the ventricle was indeed still enlarged.
Fast forward a bit...PDA resolved itself by 6 months. ventricle not growing, no mid line shift, not so large as to cause concern, just bigger than left and bigger than average. At 2 months I started noticing some delays. At 4 months, the pediatrician finally agreed and had him evaluated. All sorts of delays, as much as you can test in a 4 month old. So the therapies start, OT, PT, and a teacher. Then I notice that my formerly fat baby is not so much fat. And I start picking, and being told not to worry. Mind you, I wasn't exactly new at this. I hava a daughter who is 5.5 years older! Finally, when the growth chart flat lines they do a swallow study. diagnosis-dysphasia. Fine, thicken his foods, but STILL not doing anything, I am still worried and being ignored. And then he loses weight. Finally they send him for a feeding tube. For 4 months he never got above 15 pounds, got down right skinny and they thought I was just being an overly worried mom! Well, he got the tube in, and has gained weight like a champ! As a matter of fact, we recently tried to see if he could do well without the feeding tube...not so much. He lost ove a pound in 9 days! The consolidation? He gained it all back, plus some in 5 days when we put it back in.
It is an NG tube. I am sure if I can hack it at doing the blog more and better this time there will be more on it, but for now I will say it is the thing that I hate and love at the same time. Justin has a hypersensitive gag reflex, combine that with the open sphyncter from the feeding tube and I get puked on...a lot...sometimes multiple times a day...and I do...not...like...puke. But I LOVE my son, and I would do anything for him, including learn how to safely shove 30 cm of rubber hose up his tiny little nose and tape it to his precious little face, "ruining" all baby pics. so that he can have those cute little fat rolls that all healthy babies should have. And get puked on multiple times a day, because that is what he does when he has a good cry, or cough, or feels like it, or I just showered, or just gave him a bath, or any and all combinations of those.
And final little insert in this entry...a MAJOR reason for the networking. (Always save the best for last, right?) This is a little "laundry list" of Justin's diagnoses.
*hypotonia
*macrocephaly
*FTT
*developmentally delayed
*eczema
*PDA (since resolved)
*hydrocephalus
*dysphagia
*hypersensitive gag reflex
*"unique cranial facial formations"
And the coolest thing about him, proof that he is one in a billion and why I want to network. We got genetic testing done, to see if we could find the cause of this set of issues that he has. As it would turn out, and is so very appra pro for my life, he DOES have chromosomal issues. Two duplications on the X chromosome. The first one is one that the doctor's have seen before, and they know that it has nothing to do with any of his issues. The second duplication- THERE IS NOTHING WRITTEN ABOUT THIS DUPLICATION IN ANY MEDICAL LITERATURE IN THE WORLD, THAT THEY KNOW OF!!! Now, if these same genes were deleted as opposed to duplicated my son would have FG syndrome, but they're not. He has a duplication, not a deletion. And since there is no literature, they can tell me nothing. Now, when I heard this I laughed. Because, like I said, this is right on track with my life. NOTHING goes like it is supposed to, nothing. Why would my children be any different? I am not saying that in a negative way in the least. I like that I am not "normal." That I am a unique individual and can not and will not be shoved into any one size fits all mold. The problem is, in situations like this, it gets a little difficult figuring things out when you tread ground that no one, supposedly has tread before.
So, if you know of anyone who has, or knows someone who has, or has a cousin or friend or whatever whose situation sounds similar, please, get us in touch. Let us CREATE the literature if there is none out there.
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