Anne Rice (author of the Vampire Chronicles, etc) asked on Facebook if readers would post their thoughts/experiences on the health care system in the US. Here is what I posted:
"I feel that coverage for everyone is important, as well no limits on "lifetime benefits". I've had moderate to severe asthma most of my life, and when I was age 11, my parents starting talking to me every so often about how I needed to ha...ve a good career with good group health insurance benefits when I "grew up", because there was no way that I would ever qualify for health insurance on my own. I think this really scared them. I was fortunately able to do just that. However, my first son was born with severe heart and lung defects. . . we were able to add him to both of our insurance companies. . . when he died at almost 4 months old (he was our little fighter!), he'd just about maxed out his lifetime benefits for his primary insurance, well on the way of maxing out the secondary insurance. Parents should not have to ever be in that kind of position!"
Thursday, November 4, 2010
Sunday, July 4, 2010
4th of July and Boston Med (HLHS)
I know where I was and who I was with most of my life on every 4th of July. . . and I just remembered that three years ago, my DH and I were living back in Illinois, and we took our little grill and cooked out near Lake Michigan (boy, I really miss the lake). We watched the fireworks from there, too. I remember being worried that the noise would hurt the baby. Other than that, we were surpremely happy. My all-day sickness had finally abated mostly, and I was just starting to feel the baby oh, so occaisonally. We were looking forward to seeing our baby. It was a month later that we found out that Sam had HLHS (but didn't know about his other problems yet).
And then a couple of nights ago, my husband and I started watching Boston Med. This was in part because apparently my husband accidently walked in on a film crew from the show when he was at work sometime in the last couple of months. (They followed up a doctor who was in Boston and then moved here.) We had to turn it off after the first 15 minutes or so.
They followed a couple whose first baby was also diagnosed with HLHS in utero. We were somewhat okay with this until the mom said that her son's name was Sam. I started crying and my husband turned off the tv. I was fine with that, until my curiousity got the best of me. . . I had to look them up online to "see what happened".
I have to be honest. . . I was rather hoping their Sam would die, too. (Apparently he's gone through the first two surgeries - the Norwood and the Glenn- and has done well since his birth, etc, was filmed last year.) I felt and still feel so guilty for hoping that. I asked my husband - "Why do THEY get to keep their Sam and we don't?? And why didn't they feature a baby with HLHS who doesn't make it?"
My husband oh so helpfully pointed out that because it's a 'reality' medical show, it's going to be "cheesy" -- they are not going to feature a baby who eventually dies because more defects, such as a non-functioning lung, aren't discovered until he's six weeks old, or die from bleed-outs after procedures (like OUR Sam).
Thanks, I feel a little better now.
And then a couple of nights ago, my husband and I started watching Boston Med. This was in part because apparently my husband accidently walked in on a film crew from the show when he was at work sometime in the last couple of months. (They followed up a doctor who was in Boston and then moved here.) We had to turn it off after the first 15 minutes or so.
They followed a couple whose first baby was also diagnosed with HLHS in utero. We were somewhat okay with this until the mom said that her son's name was Sam. I started crying and my husband turned off the tv. I was fine with that, until my curiousity got the best of me. . . I had to look them up online to "see what happened".
I have to be honest. . . I was rather hoping their Sam would die, too. (Apparently he's gone through the first two surgeries - the Norwood and the Glenn- and has done well since his birth, etc, was filmed last year.) I felt and still feel so guilty for hoping that. I asked my husband - "Why do THEY get to keep their Sam and we don't?? And why didn't they feature a baby with HLHS who doesn't make it?"
My husband oh so helpfully pointed out that because it's a 'reality' medical show, it's going to be "cheesy" -- they are not going to feature a baby who eventually dies because more defects, such as a non-functioning lung, aren't discovered until he's six weeks old, or die from bleed-outs after procedures (like OUR Sam).
Thanks, I feel a little better now.
Saturday, May 15, 2010
N at 2 months
Tomorrow N is two months old already!
In the last 24 hours, it has taken even longer to feed him, because he hasn't just started looking around and getting distracted while eating, but now he will sometimes "unlatch" and smile up at me. . . letting me know he's happy. It's so sweet and makes ME feel so good that I don't mind the feedings taking longer!
Today, I observed N noticing his hand. He was staring it, nearly cross-eyed, intently for a good minute or so.
He loves still to look up at the mirror that above him on his cradle swing (both the swing and the mirror are lovely inventions for fussy babies. . .)
He "talks" all the time now. . . not just cooing but other noises, too.
We received our order of cloth diapers - to give cloth diapering a try - yesterday. I had been dithering over the decision to try some since before N was born. I ran them several times in hot to prepare them as per the instructions. They soak just fine now. I think we'll do the "pure and natural" disposables at night yet, for now. Cloth diapers are bulkier on Nick, but that's okay. . . this kind of bulk is rather cute!
In the last 24 hours, it has taken even longer to feed him, because he hasn't just started looking around and getting distracted while eating, but now he will sometimes "unlatch" and smile up at me. . . letting me know he's happy. It's so sweet and makes ME feel so good that I don't mind the feedings taking longer!
Today, I observed N noticing his hand. He was staring it, nearly cross-eyed, intently for a good minute or so.
He loves still to look up at the mirror that above him on his cradle swing (both the swing and the mirror are lovely inventions for fussy babies. . .)
He "talks" all the time now. . . not just cooing but other noises, too.
We received our order of cloth diapers - to give cloth diapering a try - yesterday. I had been dithering over the decision to try some since before N was born. I ran them several times in hot to prepare them as per the instructions. They soak just fine now. I think we'll do the "pure and natural" disposables at night yet, for now. Cloth diapers are bulkier on Nick, but that's okay. . . this kind of bulk is rather cute!
Friday, May 14, 2010
N and Sam
N is "talking", cooing, smiling, giggling, and trying to laugh. He's moving his arms and legs with more directed action, and delighting in it. He is just about 24 inches long -- which means he is the length Sam was at when he died. Sam didn't weigh as much as Nick - who is now 12 lbs -- but in those few pictures of us holding Sam after he died, Sam looks so bloated compared to N alive. Sam had been pumped full of all sorts of things as they tried to keep him alive for nearly three hours. N looked "pudgy" a few days ago, but now doesn't so much anymore. . . he's moving!
N is passing Sam up in everything now. Except in hair. . . Sam had lots of hair that he never lost. N is still rather bald-ish in comparison. . . so Sam will never lose that distinction!
N is passing Sam up in everything now. Except in hair. . . Sam had lots of hair that he never lost. N is still rather bald-ish in comparison. . . so Sam will never lose that distinction!
Sunday, May 9, 2010
Sign from Sam on Mother's Day?
Today, I was with my dad, who is visiting, and N at a local farmer's market. There was a group with guitars, singing. When we walked by, they started a song. It was "You Are My Sunshine". I haven't allowed myself to ever sing this song to N - especially because we sang it for Sam at his funeral. I started crying and my dad hugged me. It was a beautiful rendition we heard today. Maybe it was a message from Sam that we are never truly apart, and that he is happy that N is here. I think that Sam sent us Nick to love and hold.
Saturday, May 1, 2010
Facebook Status Updates from the last six weeks
May 1: "Oh, great. There IS such thing as post-partum carpal tunnel syndrome -- mostly in nursing mothers. Years of typing and playing handbells didn't cause it. . . my beautiful baby caused it (indirectly) instead!"
April 30: "Looking forward to B's day off, so maybe he can be up for hours in the early morning with the baby. 4.5 hours of sleep total for me last night. What happened to that couple of weeks of several more hours of sleep per night??"
April 29: " ahhh, he's asleep. Off to bed!"
April 29: "Why are our early morning feeding/changing sessions lasting over an hour the last few days? He keeps going (so multiple diaper changes in a very short time), and also eating very, very slowly - and yet he acts famished. Eating slowly and savoring?"
April 27: "We have been loaned a cradle swing. Part off it is being washed right now, so Nick hasn't tried it yet . . . and this this is the first afternoon in a few weeks that Nick went to sleep for an afternoon nap without going on a long walk (and not being moved at all). Go figure."
April 26: "Nick is six weeks old, and for the first time, he is upstairs in bed and I am downstairs doing a few things before I head to bed. I am anxious and have the movement/sound monitor on. So far, he's fine. Usually, so far, if I am downstairs he is downstairs, etc, so this is different."
April 26: "Nick is starting to scootch himself to reach things, while on his back. . . and still doesn't like tummy time."
April 24: " Nick seems to like showers better than baths - today, anyway."
April 21: "Nick gained another 11 oz in the last week. . . he is almost 3 lbs over birth weight at five weeks and 1 day old. Is this too much?"
April 19: " Insatiable, insatiable baby! He's been eating for three out of the last four hours. . . ounces and ounces. . . what to do?"
April 19: " Baby Status Update #17: Nick nearly slept through his first visit to Sabino Canyon!"
April 19: "I had eight entire hours of sleep overnight (although they weren't quite contiguous) -- the baby slept from 8:30 pm to 6:30 am, only getting up once to eat an enormous amount!"
April 16: "Nick is one month old already!"
April 15: "Baby has been awake and crying for hours. We are taking a nice long walk since he wants to move. He is almost napping. Oops. Stopped moving for too long."
April 14: " Baby Status Update #16: Nick has gained another pound in the last week. . . so he's gained two pounds since two weeks ago! Wow."
April 13: "Baby Status Update #15: Nick is currently loving the vibrating bouncer (and is looking at the dangling animals) - this is the first time in over two hours that I have been able to put him down. Last night, he decided he did not want to be swaddled, and would not go to sleep until I unswaddled him."
April 12: " Gassy, crying baby. Maybe mommy shouldn't eat spicy food. . ."
April 10: "Baby Status Update #14: Nick just Skyped with his Grandma and Grandpa Jaberg. . . well, on our end."
April 7: "Baby Status Update #13: Nick has gained another 4.5 oz in two days, which puts him at a weight gain of an entire pound in one week!"
April 6: "A little gentleman lying in my lap is still awake at 11 pm. Last night was an aberration (asleep at 10:30 pm) apparently."
April 5: "Baby Status Update #12: Nick went to his first handbell rehearsal (well, since he was born - he grew in his mom hearing bells up to the week before he was born) tonight - and slept peacefully right through it! He also "held" his first bells. . . a picture will be posted soon."
April 5: "Baby Status Update #11: Nick now weighs 8lbs, 6 oz!!"
April 4: "Baby status update #10: Nick seems to be saying, "Forget these pastels - give me this afghan instead, that has the dark blue, purple and white stripes.""
April 4: "Baby status update #9: It is 9 pm, so Nick is awake now. He is looking at me with his eyes that look like mine, his grandpa's and his great-grandpa's. And he just ate an incredible amount. And we didn't feel the earthquake today."
April 3: "A very awake, insatiable baby at 11:15 pm. A very tired mommy. We probably won't go to the 6 am sunrise service tomorrow."
March 30: "Baby Status Update #8(??): Our little Nick baby is presently milk-drunk. ♥ "
March 30: "Delighting in the baby sleeping on my lap!"
March 29: "just took Nick out in public in the snugli carrier we were given. He was fine in it but was mistaken for a girl because of the bit of pink decor on it."
March 28: "Baby Status Update #7: It seemed like Nick was starting to work out the night and day thing. . . except now he's awake at almost three am instead of earlier in the night. Mommy's tried singing to him and everything. . . but he seems perfectly happy being awake (but Mommy has to hold him.)"
March 26: "Baby Status Update #6: Nick has gained 6 ounces in four days!"
March 24: "Baby Update Status #5: Nick is hearing in the background, Tales of Hoffman (opera) on PBS."
March 23: "Baby Update Status #4: Nick went on his first walk today in his stroller -- to the mailbox!"
March 22: "Baby status update #3: Nick was up from 8 pm to 3:30 am last night and went through 10+ diaper changes. He wanted to eat continuously and wet himself completely nearly every fifteen minutes. Normal?"
March 22: "Baby status update #2: We created a Mii for Nick, and weighed him using Baby Stats on the Wii Fit. According to this, he has gained a few ounces back since we left the hospital. Yay!"
March 21: "Baby status update #1: In the last 24 hours, he managed to fill his entire hamper completely. The washer is running."
April 30: "Looking forward to B's day off, so maybe he can be up for hours in the early morning with the baby. 4.5 hours of sleep total for me last night. What happened to that couple of weeks of several more hours of sleep per night??"
April 29: " ahhh, he's asleep. Off to bed!"
April 29: "Why are our early morning feeding/changing sessions lasting over an hour the last few days? He keeps going (so multiple diaper changes in a very short time), and also eating very, very slowly - and yet he acts famished. Eating slowly and savoring?"
April 27: "We have been loaned a cradle swing. Part off it is being washed right now, so Nick hasn't tried it yet . . . and this this is the first afternoon in a few weeks that Nick went to sleep for an afternoon nap without going on a long walk (and not being moved at all). Go figure."
April 26: "Nick is six weeks old, and for the first time, he is upstairs in bed and I am downstairs doing a few things before I head to bed. I am anxious and have the movement/sound monitor on. So far, he's fine. Usually, so far, if I am downstairs he is downstairs, etc, so this is different."
April 26: "Nick is starting to scootch himself to reach things, while on his back. . . and still doesn't like tummy time."
April 24: " Nick seems to like showers better than baths - today, anyway."
April 21: "Nick gained another 11 oz in the last week. . . he is almost 3 lbs over birth weight at five weeks and 1 day old. Is this too much?"
April 19: " Insatiable, insatiable baby! He's been eating for three out of the last four hours. . . ounces and ounces. . . what to do?"
April 19: " Baby Status Update #17: Nick nearly slept through his first visit to Sabino Canyon!"
April 19: "I had eight entire hours of sleep overnight (although they weren't quite contiguous) -- the baby slept from 8:30 pm to 6:30 am, only getting up once to eat an enormous amount!"
April 16: "Nick is one month old already!"
April 15: "Baby has been awake and crying for hours. We are taking a nice long walk since he wants to move. He is almost napping. Oops. Stopped moving for too long."
April 14: " Baby Status Update #16: Nick has gained another pound in the last week. . . so he's gained two pounds since two weeks ago! Wow."
April 13: "Baby Status Update #15: Nick is currently loving the vibrating bouncer (and is looking at the dangling animals) - this is the first time in over two hours that I have been able to put him down. Last night, he decided he did not want to be swaddled, and would not go to sleep until I unswaddled him."
April 12: " Gassy, crying baby. Maybe mommy shouldn't eat spicy food. . ."
April 10: "Baby Status Update #14: Nick just Skyped with his Grandma and Grandpa Jaberg. . . well, on our end."
April 7: "Baby Status Update #13: Nick has gained another 4.5 oz in two days, which puts him at a weight gain of an entire pound in one week!"
April 6: "A little gentleman lying in my lap is still awake at 11 pm. Last night was an aberration (asleep at 10:30 pm) apparently."
April 5: "Baby Status Update #12: Nick went to his first handbell rehearsal (well, since he was born - he grew in his mom hearing bells up to the week before he was born) tonight - and slept peacefully right through it! He also "held" his first bells. . . a picture will be posted soon."
April 5: "Baby Status Update #11: Nick now weighs 8lbs, 6 oz!!"
April 4: "Baby status update #10: Nick seems to be saying, "Forget these pastels - give me this afghan instead, that has the dark blue, purple and white stripes.""
April 4: "Baby status update #9: It is 9 pm, so Nick is awake now. He is looking at me with his eyes that look like mine, his grandpa's and his great-grandpa's. And he just ate an incredible amount. And we didn't feel the earthquake today."
April 3: "A very awake, insatiable baby at 11:15 pm. A very tired mommy. We probably won't go to the 6 am sunrise service tomorrow."
March 30: "Baby Status Update #8(??): Our little Nick baby is presently milk-drunk. ♥ "
March 30: "Delighting in the baby sleeping on my lap!"
March 29: "just took Nick out in public in the snugli carrier we were given. He was fine in it but was mistaken for a girl because of the bit of pink decor on it."
March 28: "Baby Status Update #7: It seemed like Nick was starting to work out the night and day thing. . . except now he's awake at almost three am instead of earlier in the night. Mommy's tried singing to him and everything. . . but he seems perfectly happy being awake (but Mommy has to hold him.)"
March 26: "Baby Status Update #6: Nick has gained 6 ounces in four days!"
March 24: "Baby Update Status #5: Nick is hearing in the background, Tales of Hoffman (opera) on PBS."
March 23: "Baby Update Status #4: Nick went on his first walk today in his stroller -- to the mailbox!"
March 22: "Baby status update #3: Nick was up from 8 pm to 3:30 am last night and went through 10+ diaper changes. He wanted to eat continuously and wet himself completely nearly every fifteen minutes. Normal?"
March 22: "Baby status update #2: We created a Mii for Nick, and weighed him using Baby Stats on the Wii Fit. According to this, he has gained a few ounces back since we left the hospital. Yay!"
March 21: "Baby status update #1: In the last 24 hours, he managed to fill his entire hamper completely. The washer is running."
Friday, April 30, 2010
Postpartum Anxiety
What I posted in a message board this morning:
I went a Postpartum support group meeting a couple of days ago, and there I learned that there IS such a thing as Postpartum Anxiety and Postpartum OCD. Apparently I have more signs of these things than Postpartum Depression. Nick is over six weeks old now, and these things are getting worse.
Also, Nick was sleeping so well, and had a really nice night schedule for a few weeks. He would sleep for a 4.5 hour stretch, eat around 4 am or so, and then go right back to sleep for at least another 3 hours. I was getting at least 7 hours of sleep at night. For the last two nights, he's been waking up at different times, and then taken TWO hours to eat and go back to sleep. Apparently he is just getting distracted by looking at me and looking around. Also, some diarrhea, so I have to change his diaper three times sometimes before he will go to sleep again.
So the lack of sleep, plus my constant worry, plus the fact that at night I panic when I can't find my flashlight so that I look to check Nick's breathing a minimum of five times before I feel "free" to go to sleep. I have an overwhelming feeling that if I don't check constantly, something will happen to him (he will die) to punish me for not doing something right. I am constantly wondering/asking "what if? what if? what if?" until I am on the edge of constant panic all the time.
My husband, who had been against me going back on an SSRI until we were completely done having children (we're not - we'd like one more - but won't try again until next year at the earliest), because my being on a certain one during conception of our first PERHAPS played a role his defects. . . has finally admitted that maybe I need to go back on something, at least for a few months. (I want to. . . and I had been telling him that. I need to do something.) I was vocalizing my constant "worry thoughts" to him last night. I couldn't stop. He finally realized that there is a problem.
I was on SSRIs for anxiety, not depression, years ago in the first place. This anxiety I am experiencing now feels magnified greatly compared to then!
I have a doctor's appt next week to further discuss the SSRI option. I am partially breastfeeding my son - I don't make enough - but he gets between 7 and 11 ounces of breastmilk a day, and the rest is formula - so the plus would be that I wouldn't have to worry about him getting to much of the med, but I still worry about his developing little brain with the very little he'd get.
I went a Postpartum support group meeting a couple of days ago, and there I learned that there IS such a thing as Postpartum Anxiety and Postpartum OCD. Apparently I have more signs of these things than Postpartum Depression. Nick is over six weeks old now, and these things are getting worse.
Also, Nick was sleeping so well, and had a really nice night schedule for a few weeks. He would sleep for a 4.5 hour stretch, eat around 4 am or so, and then go right back to sleep for at least another 3 hours. I was getting at least 7 hours of sleep at night. For the last two nights, he's been waking up at different times, and then taken TWO hours to eat and go back to sleep. Apparently he is just getting distracted by looking at me and looking around. Also, some diarrhea, so I have to change his diaper three times sometimes before he will go to sleep again.
So the lack of sleep, plus my constant worry, plus the fact that at night I panic when I can't find my flashlight so that I look to check Nick's breathing a minimum of five times before I feel "free" to go to sleep. I have an overwhelming feeling that if I don't check constantly, something will happen to him (he will die) to punish me for not doing something right. I am constantly wondering/asking "what if? what if? what if?" until I am on the edge of constant panic all the time.
My husband, who had been against me going back on an SSRI until we were completely done having children (we're not - we'd like one more - but won't try again until next year at the earliest), because my being on a certain one during conception of our first PERHAPS played a role his defects. . . has finally admitted that maybe I need to go back on something, at least for a few months. (I want to. . . and I had been telling him that. I need to do something.) I was vocalizing my constant "worry thoughts" to him last night. I couldn't stop. He finally realized that there is a problem.
I was on SSRIs for anxiety, not depression, years ago in the first place. This anxiety I am experiencing now feels magnified greatly compared to then!
I have a doctor's appt next week to further discuss the SSRI option. I am partially breastfeeding my son - I don't make enough - but he gets between 7 and 11 ounces of breastmilk a day, and the rest is formula - so the plus would be that I wouldn't have to worry about him getting to much of the med, but I still worry about his developing little brain with the very little he'd get.
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