Part 2 of ?
After seeing Matthew's pediatrician, we were sent back for another hearing test a week later. He still failed. We were then referred to audiology at CHCO, where we did multiple hearing tests, all of which he failed. Okay let's pause for a moment. When you're a breastfeeding mom, can I tell you HOW AWKWARD doing a hearing test is on an infant? Basically you have to starve them and keep them awake for 3 hours prior to the test. Pretty rough when your kid is used to eating every 2 hours on the dot. Then, you nurse them to sleep, and keep them ON THE BOOB for a couple of hours, while the doctor puts in different mechanisms for their ears,and different sensors around their head. So basically they're all up in your business. And it makes your baby look like a cyborg or something out of the Matrix. But I digress.
The thought was that because he was very small, and because I didn't push for very long (my reward for 20 hours of labor I suppose), some fluid was stuck in his ear. Generally delivery pushes the fluid out of the baby's ears. We were given a referral for an ENT, which meant waiting. Referrals, I was starting to learn, took some time, as we were STILL waiting to see the neurosurgeon.
We finally saw him once Matthew was about 3 months old. Dr. Micheal Handler was his name. Now, we didn't ask for Dr. Handler, he was just given to us, and I thank our lucky stars every day for him. Dr. Handler is apparently nationally renown, and is one of the leading experts on kids with Spina Bifida. He sent us for an MRI. When the results came back, it was confirmed; Matthew didn't have "a little spina bifida"....he had SPINA BIFIDA. Now, there are a LOT of different types of Spina Bifida. Matthew's particular variance is called lipomyelomeningocele. (There's a mouthful for ya. You pronounce it lipo-milo-my-ninja-seal) So, basically, here's what happened. When Matthew's spinal column didn't close, the body developed a lipoma (fatty tumor) to protect the defect. But, in doing that, the spinal cord grew through the opening, and attached to the tumor. This is called a tethered cord. (You can learn more at http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/lipomyelomeningocele/ if you're interested) While one of the most rare forms of Spina Bifida, it's also one of the less debilitating. So there's your silver lining.
What all this meant, while the Monkey's tail was adorable, it had to go. And by this point, it was no longer a cute tail. As Matthew grew, so did the lipoma. It was now a sizable lump on his back. Aside from acting as a barrier from keeping baby poop from going up the back, it was nothing but a nuisance that caused him pain, and would continue to do so as he grew more and more. Without detethering the spinal cord, he could face major complications later in life. Some parents do decide to wait. I, personally, am thankful we had a surgeon who encouraged early surgery.
Coming up: the trip to the ENT, and getting ready for surgery.
Wednesday, January 31, 2018
Tuesday, January 30, 2018
He has a little spina bifida
"He has a little spina bifida."
I can still remember sitting on the exam table as my doctor-my OB, the one who helped us through infertility, who fought alongside me to get pregnant, who had; up until now; been one of my favorite people-said these words to me.
I asked what that meant. She explained that there was small space in his spinal column between the vertebrae, where the spinal column didn't form all the way.
I was only 26 weeks pregnant. We had just barely found out that we were having a boy, and Matthew wasn't even his name yet. (Though looking at him now, I can't imagine he was ever anything but Matthew).
She sent me to a specialist in maternal fetal medicine. Long story short, they did a TON of tests and determined the defect was closed, meaning the rest of his body had formed properly over his spinal column, though it was still open. These defects are generally called spina bifida occulta, because they are not seen from the outside. Some people never know they have it. So they told us to go on with business as usual and not worry. And so we did. They never told us the possibilities. Good or bad. They didn't tell us anything.
December 2016, and after twenty long and difficult hours of labor, I gave birth to a 38.5 week old, 5 lb 9 oz, 19 inch long, healthy baby boy. Or so I thought. After he was born and he was laid on my chest, he was instantly taken away to the warmer. As my doctor started to stitch me up, I started to hear chatter. Questions that my husband was answering. "Yes we knew" "They did an amnio" "They told us it was a closed defect".
Apparently NO ONE at the hospital read my chart (my OB office was through my delivering hospital), and knew he had spina bifida. Possible. A little. Whatever.
They eventually brought him back to me, and there it was on his back. A nub. It sort of looked like an inverted belly button. We had been nicknaming him Monkey since during pregnancy, so we joked it was his tail.
The next morning, the pediatrician on call came in and stated that they'd want to see him the first day we could get in after leaving the hospital. They checked him out and said he had great movement and strength, and so there was no reason to rush or hurry anything.
Before leaving, they also did several hearing tests, which he kept failing in his left ear.
So not only did we leave the hospital unsure if our son had a little spina bifida, or SPINA BIFIDA, but also with a lingering fear of hearing loss as well.
I went home feeling so lost, empty, confused, and angry. Angry that no one had known. Angry that I had been told to expect nothing when there was something. Angry that I was angry and not just happy. Angry that those first moments had been taken from me. Just angry.
The next day we saw the pediatrician, whom we had chosen and was different than the one we saw at the hospital. She agreed there was no rush, and referred us to neurology at Children's Hospital of CO. If only I had known then the roller coaster that one phone call had started.
(TO BE CONTINUED)
I can still remember sitting on the exam table as my doctor-my OB, the one who helped us through infertility, who fought alongside me to get pregnant, who had; up until now; been one of my favorite people-said these words to me.
I asked what that meant. She explained that there was small space in his spinal column between the vertebrae, where the spinal column didn't form all the way.
I was only 26 weeks pregnant. We had just barely found out that we were having a boy, and Matthew wasn't even his name yet. (Though looking at him now, I can't imagine he was ever anything but Matthew).
She sent me to a specialist in maternal fetal medicine. Long story short, they did a TON of tests and determined the defect was closed, meaning the rest of his body had formed properly over his spinal column, though it was still open. These defects are generally called spina bifida occulta, because they are not seen from the outside. Some people never know they have it. So they told us to go on with business as usual and not worry. And so we did. They never told us the possibilities. Good or bad. They didn't tell us anything.
December 2016, and after twenty long and difficult hours of labor, I gave birth to a 38.5 week old, 5 lb 9 oz, 19 inch long, healthy baby boy. Or so I thought. After he was born and he was laid on my chest, he was instantly taken away to the warmer. As my doctor started to stitch me up, I started to hear chatter. Questions that my husband was answering. "Yes we knew" "They did an amnio" "They told us it was a closed defect".
Apparently NO ONE at the hospital read my chart (my OB office was through my delivering hospital), and knew he had spina bifida. Possible. A little. Whatever.
They eventually brought him back to me, and there it was on his back. A nub. It sort of looked like an inverted belly button. We had been nicknaming him Monkey since during pregnancy, so we joked it was his tail.
The next morning, the pediatrician on call came in and stated that they'd want to see him the first day we could get in after leaving the hospital. They checked him out and said he had great movement and strength, and so there was no reason to rush or hurry anything.Before leaving, they also did several hearing tests, which he kept failing in his left ear.
So not only did we leave the hospital unsure if our son had a little spina bifida, or SPINA BIFIDA, but also with a lingering fear of hearing loss as well.
I went home feeling so lost, empty, confused, and angry. Angry that no one had known. Angry that I had been told to expect nothing when there was something. Angry that I was angry and not just happy. Angry that those first moments had been taken from me. Just angry.
The next day we saw the pediatrician, whom we had chosen and was different than the one we saw at the hospital. She agreed there was no rush, and referred us to neurology at Children's Hospital of CO. If only I had known then the roller coaster that one phone call had started.
(TO BE CONTINUED)
Sunday, January 28, 2018
Count your silver linings because they were thrown at your face to make you strong because you can handle it...
Anyone who's ever struggled, and struggled openly has heard them.
Find the silver linings.
Count your blessings.
It could be worse.
God never gives you more than you can handle.
What doesn't kill you makes you stronger.
Those sayings that make you nod your head in forced aggreeance, and instantly inside admonish yourself for being a spoiled, rotten, ungrateful brat. Or........just me? Well that's okay.
See, most of my life it was driven into me by nearly everyone around me to be grateful for what I had. And I was. But it was also driven into my head any time I complained, and that made me feel as though it was never okay for me to be unhappy. Because someone else was always more unhappy. Because my feelings just weren't valid ENOUGH to warrant feeling that way.
It didn't stop after childhood. Maybe its just where I live, my lifestyle, my social circle, but I hear it EVERYWHERE as an adult. You're just not allowed to be unhappy without someone telling you why you're wrong.
But here's the thing. My being unhappy does NOT mean I'm not grateful. One doesn't equal the other. And my being unhappy doesn't invalidate someone else's unhappiness. Just as my happiness wouldn't invalidate someone else's happiness. It doesn't work that way. That's a completely illogical fallacy that we've created.
So why do we do it? I've done it. Gotten angry when someone else complains about something that I feel I have worse. Felt like someone should tell them to be grateful that its not way worse.
Here's my take on it, and you can take it or leave it. I think it comes out of a need for compassion. A need to be heard, to be loved. We are all taking on SO much in our lives, often alone, so when someone has the actual "AUDACITY" to voice it out loud, to tell others they're struggling, to express the need for community and support, we get angry, because we have suffered alone and silently. We, for whatever reason, didn't reach out. We were never reached out to. Whatever the reasoning behind it, the injustice of it hits us HARD and makes us angry that this other person is going to get the love and compassion we didn't get.
So as we come into the "national month of love" (can you see all that sarcasm dripping around here?) here's the challenge I'm taking, that I extend to everyone else. Treat each other with love. Don't project your hurts onto someone else and expect them to continue that cycle. Allow it to stop by extending the love and compassion you wish you'd gotten.
Let's stop the comparing guys. And start the loving.
Find the silver linings.
Count your blessings.
It could be worse.
God never gives you more than you can handle.
What doesn't kill you makes you stronger.
Those sayings that make you nod your head in forced aggreeance, and instantly inside admonish yourself for being a spoiled, rotten, ungrateful brat. Or........just me? Well that's okay.
See, most of my life it was driven into me by nearly everyone around me to be grateful for what I had. And I was. But it was also driven into my head any time I complained, and that made me feel as though it was never okay for me to be unhappy. Because someone else was always more unhappy. Because my feelings just weren't valid ENOUGH to warrant feeling that way.
It didn't stop after childhood. Maybe its just where I live, my lifestyle, my social circle, but I hear it EVERYWHERE as an adult. You're just not allowed to be unhappy without someone telling you why you're wrong.
But here's the thing. My being unhappy does NOT mean I'm not grateful. One doesn't equal the other. And my being unhappy doesn't invalidate someone else's unhappiness. Just as my happiness wouldn't invalidate someone else's happiness. It doesn't work that way. That's a completely illogical fallacy that we've created.
So why do we do it? I've done it. Gotten angry when someone else complains about something that I feel I have worse. Felt like someone should tell them to be grateful that its not way worse.
Here's my take on it, and you can take it or leave it. I think it comes out of a need for compassion. A need to be heard, to be loved. We are all taking on SO much in our lives, often alone, so when someone has the actual "AUDACITY" to voice it out loud, to tell others they're struggling, to express the need for community and support, we get angry, because we have suffered alone and silently. We, for whatever reason, didn't reach out. We were never reached out to. Whatever the reasoning behind it, the injustice of it hits us HARD and makes us angry that this other person is going to get the love and compassion we didn't get.
So as we come into the "national month of love" (can you see all that sarcasm dripping around here?) here's the challenge I'm taking, that I extend to everyone else. Treat each other with love. Don't project your hurts onto someone else and expect them to continue that cycle. Allow it to stop by extending the love and compassion you wish you'd gotten.
Let's stop the comparing guys. And start the loving.
Thursday, January 25, 2018
Early Morning Rambling
It’s 5:41 AM and I am fully and completely awake. For what feels like the bajillionth day in a row, I have woken up for whatever reason before the sun, and been entirely unable to go back to sleep. It’s been somewhat helpful, as I’ve been taking the time in the morning before anyone else is up to shower, drink coffee, do some housework, and just in general enjoy some time to myself. It feels like a good thing. My house is getting cleaner by the day, which it sorely needed.
Unfortunately, my gut says it isn’t. My gut says it’s mania disguising itself as something productive. Since I started seeing my therapist and psychiatrist in July 2017, we’ve tried several medication and dosage combinations. Since we’ve started that process, the mania has continued to ramp up more and more. And I’m left wondering if what is happening is one of several scenarios:
1-I am really as lazy as I think, and this is true mania. Once it’s under control I’ll go back to being unmotivated and lazy
2-I was never lazy before, just depressed, and this is not mania, but rather me coming out of the depression and actually living like a “normal” person. The meds are working.
3-a combination of the above. This is in fact mania, but I’ve also come out of my depression, so it’s seeming more exaggerated.
When I first started seeing my care team, I was diagnosed with PTSD, major depressive disorder, and generalized anxiety disorder. After playing with a medication dosage for a while, my symptoms changed and got worse. The emergence of these things led them to a diagnosis instead of PTSD, GAD, and bipolar (type currently unspecified). I honestly understand now why it takes so many people so long to get mentally healthy. It takes forever to find the right diagnosis, and then once that diagnosis is found, the right medication and damage has to be found. It’s a long and arduous process, and I have no doubt it’ll be a year into my treatment before I really feel like we’re getting anywhere substantial.
In other news, I am still, STILL, STIIIIILLLLL waiting in the approval for my short term disability from my employer. To catch you all up to speed, I stopped working and applied in October. The way mynpaperowk was filled out made them require me to apply for and be denied by workman’s comp. once that was FINALLY completed, they approved a portion of my leave-through 11/10, and gave me the back pay owed to that point, however, most of it was eaten up by back payment to my insurance and 401k. Now, I am STILL waiting for them to approve the rest of my leave. The stress from this, and from having no income, has not surprisingly been contributing to my degraded mental status. I am so frustrated this is taking so long. Here’s hoping that this week is the week.
Unfortunately, my gut says it isn’t. My gut says it’s mania disguising itself as something productive. Since I started seeing my therapist and psychiatrist in July 2017, we’ve tried several medication and dosage combinations. Since we’ve started that process, the mania has continued to ramp up more and more. And I’m left wondering if what is happening is one of several scenarios:
1-I am really as lazy as I think, and this is true mania. Once it’s under control I’ll go back to being unmotivated and lazy
2-I was never lazy before, just depressed, and this is not mania, but rather me coming out of the depression and actually living like a “normal” person. The meds are working.
3-a combination of the above. This is in fact mania, but I’ve also come out of my depression, so it’s seeming more exaggerated.
When I first started seeing my care team, I was diagnosed with PTSD, major depressive disorder, and generalized anxiety disorder. After playing with a medication dosage for a while, my symptoms changed and got worse. The emergence of these things led them to a diagnosis instead of PTSD, GAD, and bipolar (type currently unspecified). I honestly understand now why it takes so many people so long to get mentally healthy. It takes forever to find the right diagnosis, and then once that diagnosis is found, the right medication and damage has to be found. It’s a long and arduous process, and I have no doubt it’ll be a year into my treatment before I really feel like we’re getting anywhere substantial.
In other news, I am still, STILL, STIIIIILLLLL waiting in the approval for my short term disability from my employer. To catch you all up to speed, I stopped working and applied in October. The way mynpaperowk was filled out made them require me to apply for and be denied by workman’s comp. once that was FINALLY completed, they approved a portion of my leave-through 11/10, and gave me the back pay owed to that point, however, most of it was eaten up by back payment to my insurance and 401k. Now, I am STILL waiting for them to approve the rest of my leave. The stress from this, and from having no income, has not surprisingly been contributing to my degraded mental status. I am so frustrated this is taking so long. Here’s hoping that this week is the week.
Introductions
Okay, so if we're going to be chatting on a regular basis, I feel like it's important that you know who you're reading about since I'll be using names to refer to people from here on out.
This is my son, Matthew. He just turned a year old. He was born on December 15 2016. He is my rainbow baby and an absolute miracle. He was conceived after a war of fighting withbinfertility and two miscarriages. It took a lot to get him here, and he is adored beyond words. Unfortunately, he was born with a birth defect called Spina Bifida. More on that later. In May of 2017, he had surgery to correct part of his defect. Since then, our life has been full of many, many, MANY doctor's appointments, and we are doing everything we can to give him to fullest life possible.
As of lately, my life is mostly occupied with trying to get healthy mentally. More on that later (sensing a pattern? My life is slightly complicated). I've recently received a new diagnosis and am seeing a therapist to manage my medication as well as work through issues that contribute to my illness. I am a HUGE advocate of mental health treatment and want to focus on breaking the stigma as much as I possibly can. The new medications I’m on seem to be helping, but it is a complicated process and I’m not entirely sure I have the correct or full diagnosis I should have.
Anyway. There’s my life. Ready to dive in?
I'm Cathie. I'm 32 years old and I live in Colorado. I'm currently a stay at home mom on disability, although I am still attached to my job in the career I had for 12 years in health insurance. More on that later. I also run my own business through Jamberry, which I love doing. I love Disney, art, dancing, fashion, the color pink, hot air balloons, sprinkles, and so much more.
This is my husband, Carlos. We met when I was 16, started dating in February of 2003, were legally married in 2012, and had our wedding ceremony in 2015. It is crazy to believe that we have been together for 15 years. We have had a lot of ups and downs but always come out on top. He is an amazing person, husband, friend, partner, and father. Essentially growing up into adulthood together have us each the chance to see each other grow, and I have to say that I am incredibly proud of the man he is.
As of lately, my life is mostly occupied with trying to get healthy mentally. More on that later (sensing a pattern? My life is slightly complicated). I've recently received a new diagnosis and am seeing a therapist to manage my medication as well as work through issues that contribute to my illness. I am a HUGE advocate of mental health treatment and want to focus on breaking the stigma as much as I possibly can. The new medications I’m on seem to be helping, but it is a complicated process and I’m not entirely sure I have the correct or full diagnosis I should have.
Anyway. There’s my life. Ready to dive in?
Tuesday, January 23, 2018
Out of The Bologna Slicer-wait, what?
This is not my first blog.
Unfortunately, due to my nature of not finishing things I start, it's not even my second or third. But that is neither here nor there.
This one is different.
See, each of my other blogs all had very specific themes, purposes, connotations. It was very obvious which PHASE of life I was going through.
This is not that kind of blog.
When my newborn son was having an MRI done (of course I'll talk about that later), the neurosurgeon showed us one specific view. It was from the top down, and the picture changed with each frame drastically, as he moved down the body. He called this the bologna slicer.
I remember thinking then, "what an incredibly accurate way to show the inside of the body." And as I went home that night, thinking about everything that was coming with our son and his medical challenges, I thought that one day, he will not be defined by it. There will be so much more to him. So many SLICES. And I remember thinking then, how symbolic the bologna slicer approach was. Because as you move through someones slices, the picture is going to change, but you will still know it is the same person.
Wouldn't it be wonderful if we could love someone for all of their slices? If we could recognize someone for all of their slices? The beautiful and delicious, as well as the tasteless and drab? Instead of picking and choosing slices to distinguish someone or ourselves, we should be looking at what the picture is with EACH slice, and when you take them all into account, what the sum is; what the end product is.
SO....hopefully I can come here and show you my slices. Gorgeous and ugly. Intriguing and embarrassing. Inspiring and exasperating. Because they all make up who I am, and have made me, me.
#newyearoldme #findingmyself #lifesslices #outofthebolognaslicer
Unfortunately, due to my nature of not finishing things I start, it's not even my second or third. But that is neither here nor there.
This one is different.
See, each of my other blogs all had very specific themes, purposes, connotations. It was very obvious which PHASE of life I was going through.
This is not that kind of blog.
When my newborn son was having an MRI done (of course I'll talk about that later), the neurosurgeon showed us one specific view. It was from the top down, and the picture changed with each frame drastically, as he moved down the body. He called this the bologna slicer.
I remember thinking then, "what an incredibly accurate way to show the inside of the body." And as I went home that night, thinking about everything that was coming with our son and his medical challenges, I thought that one day, he will not be defined by it. There will be so much more to him. So many SLICES. And I remember thinking then, how symbolic the bologna slicer approach was. Because as you move through someones slices, the picture is going to change, but you will still know it is the same person.
Wouldn't it be wonderful if we could love someone for all of their slices? If we could recognize someone for all of their slices? The beautiful and delicious, as well as the tasteless and drab? Instead of picking and choosing slices to distinguish someone or ourselves, we should be looking at what the picture is with EACH slice, and when you take them all into account, what the sum is; what the end product is.
SO....hopefully I can come here and show you my slices. Gorgeous and ugly. Intriguing and embarrassing. Inspiring and exasperating. Because they all make up who I am, and have made me, me.
#newyearoldme #findingmyself #lifesslices #outofthebolognaslicer
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