Big A: "Mommy, I got my underwear stuck in my bottom and I need to pull it out."
Wabi: "When your underwear is stuck in your bottom it is called a wedgie, sweetheart. You say I've got a Wed-gie. "
DH: "You'll regret teaching her that when she starts screaming it in the supermarket."
Wabi: "Well, I'd rather she know the correct terminology. Better she yell 'I've got a wedgie!' than 'Than I've got my underwear stuck to my bottom!'"
Big A: "Wedgie! Wedgie! It's a wedgie!"
Wabi: "It is?"
Big A: "No ... IT'S A JOKE!"
Monday, April 30, 2007
Saturday, April 28, 2007
Joy o' health insurance ends ... now
So Little A needs Zantac because without it, she is a little reflux-breathing dragon, squirting milk out of her mouth and nose for an hour after every feed and screaming in pain from it. I have filled this particular RX three times, always at the same pharmacy. Here is a synopsis of my experience:
First bottle: Cost to me: $10 standard copay. But, no applicator comes with the drugs. Considering the dosage is o.4 ml, this is a problem. Most of the medication applicators I've amassed since Big A came into the world are for doses over 1 ml, so I can't use those, either.
Second bottle: Cost to me: $23. When I ask the pharmacist worker why I 'm not being charged the usual standard copay, I am told "Your insurance doesn't work that way. You must have a deductible to meet before it kicks in." I explain that no, I don't have a deductible. And the last time I got the Zantac, it only cost me ten dollars. This elicits blank stares. The baby is crying, Big A is fussing, so I begrudgingly pay the $23 and go home with the Zantac. Oh, once again, they give me no applicator. Because 0.4 ml is such an easy amount to eyeball.
Third bottle: Cost to me: $34. What the fuck? This time Big A is not with me, and Little A is asleep in her stroller, so I feel perfectly able to stick around for a real conversation about why I have a different copay each time I get the Zantac. This time the actual pharmacist is there. He tells me that I am wrong about not having a deductible on my insurance drug coverage. To which I say, "No, that's not true." Claiming to actually know how my insurance works seems to piss him off, because he starts talking loudly and slowly, like I am both deaf and an imbecile. He says I don't know what I'm talking about.
To prove that I do know what I'm talking about, I ask him to look up the myriad of other prescriptions DH and I have filled so far this year ... always with just a copay of $10 or $20. Mr. Smartypants Pharmacist can see this clearly in the computer, so switches his argument from "You haven't met your deductible" to "This is your brand-name drug copay."
But it's not -- the brand name copay is twenty dollars," I say.
"No it's NOT," he says.
"Is too!" I say.
We are obviously going nowhere, so I snarl "thank you soooo much," pay for the drug, and leave. On the way back to my car I call my insurance company, just to verify that I am not nuts. The lady at the insurance co. says my understanding of my plan coverage sounds correct. "No deductibles," she says. Then she adds, "But Zantac isn't covered in the formulary."
"Why not?" I ask.
"Because there is a nonprescription version of that medication available."
This is just so screwy. Because I have never seen a non-RX version of liquid Zantac over the counter at any drug store I've been in. Does the insurance company seriously think that my infant can take adult (or even children's) Zantac tablets? Well, that would be a choking hazard plus Little A's first solid food ever! What fun. And Yum.
So, the insurance is lame for not covering the Zantac when in reality, the only drug I can get to fix this problem is available only by RX. And the pharmacy is incredibly lame for not being able to explain this without making erroneous claims about how my frickin' insurance works. If they don't know why the cost of the drug is coming up the way it is, why not just say "we don't know?" Why make up random reasons? Sheesh.
I am not even going to try to figure out why it costs something different each time I've received it. Perhaps there is a futures market that trades exclusively in liquid Zantac shares, so the price floats on an hourly basis depending on how much acid America's children happen to be refluxing at any given moment. Yes, that must be it.
First bottle: Cost to me: $10 standard copay. But, no applicator comes with the drugs. Considering the dosage is o.4 ml, this is a problem. Most of the medication applicators I've amassed since Big A came into the world are for doses over 1 ml, so I can't use those, either.
Second bottle: Cost to me: $23. When I ask the pharmacist worker why I 'm not being charged the usual standard copay, I am told "Your insurance doesn't work that way. You must have a deductible to meet before it kicks in." I explain that no, I don't have a deductible. And the last time I got the Zantac, it only cost me ten dollars. This elicits blank stares. The baby is crying, Big A is fussing, so I begrudgingly pay the $23 and go home with the Zantac. Oh, once again, they give me no applicator. Because 0.4 ml is such an easy amount to eyeball.
Third bottle: Cost to me: $34. What the fuck? This time Big A is not with me, and Little A is asleep in her stroller, so I feel perfectly able to stick around for a real conversation about why I have a different copay each time I get the Zantac. This time the actual pharmacist is there. He tells me that I am wrong about not having a deductible on my insurance drug coverage. To which I say, "No, that's not true." Claiming to actually know how my insurance works seems to piss him off, because he starts talking loudly and slowly, like I am both deaf and an imbecile. He says I don't know what I'm talking about.
To prove that I do know what I'm talking about, I ask him to look up the myriad of other prescriptions DH and I have filled so far this year ... always with just a copay of $10 or $20. Mr. Smartypants Pharmacist can see this clearly in the computer, so switches his argument from "You haven't met your deductible" to "This is your brand-name drug copay."
But it's not -- the brand name copay is twenty dollars," I say.
"No it's NOT," he says.
"Is too!" I say.
We are obviously going nowhere, so I snarl "thank you soooo much," pay for the drug, and leave. On the way back to my car I call my insurance company, just to verify that I am not nuts. The lady at the insurance co. says my understanding of my plan coverage sounds correct. "No deductibles," she says. Then she adds, "But Zantac isn't covered in the formulary."
"Why not?" I ask.
"Because there is a nonprescription version of that medication available."
This is just so screwy. Because I have never seen a non-RX version of liquid Zantac over the counter at any drug store I've been in. Does the insurance company seriously think that my infant can take adult (or even children's) Zantac tablets? Well, that would be a choking hazard plus Little A's first solid food ever! What fun. And Yum.
So, the insurance is lame for not covering the Zantac when in reality, the only drug I can get to fix this problem is available only by RX. And the pharmacy is incredibly lame for not being able to explain this without making erroneous claims about how my frickin' insurance works. If they don't know why the cost of the drug is coming up the way it is, why not just say "we don't know?" Why make up random reasons? Sheesh.
I am not even going to try to figure out why it costs something different each time I've received it. Perhaps there is a futures market that trades exclusively in liquid Zantac shares, so the price floats on an hourly basis depending on how much acid America's children happen to be refluxing at any given moment. Yes, that must be it.
Wednesday, April 18, 2007
Joy of Health Insurance
Health insurance is so annoying, expensive, and aggravating most of the time. But, when it all works out, it's such a fabulous thing. Today I am in love with my health insurance for approving another shot of synagis for Little A. Yay! RSV protection for one more month for my sweet little bean!
According to the girls' pediatrician, RSV is one of the most common viruses out there. Most of the time it presents itself as a regular cold. But if you are a newborn -- especially one who was born prematurely, RSV infection can cause serious lung problems. It can even kill.
Enter Synagis, the shot that gives immunity to RSV. I can only imagine that Synagis is made from the diamond-dusted tears and melodious sighs of garden sprites, because one infant-sized syringe of the stuff costs something like twelve hundred dollars. And the immunity only lasts about one month per shot. So during RSV season, most kids will get three or four doses.
After much back and forth between the insurance company, the pediatrician's office, and me, everything eventually got set up for Little A to begin her Synagis shots. While it was complicated and a bit confusing to get her approved, the actual process of getting her the meds since the approval has been very orderly and easy. Once a month I get a call to tell me when the medication will arrive. It shows up in a cold pack via Fed Ex, and I have to throw it in the fridge as soon as it comes to the house. The day the package arrives, I also get a call from a home health care nurse who schedules an appointment for the next day.
Home nurse visits are fabulous! The nurses have all been gentle and kind to Little A. They have also been sweet to Big A, who invariably gets a tad jealous of all the attention being heaped on her sister and is compelled to either break dance in a princess costume or streak naked through the living room at some point.
So, right now I'm feeling very appreciative and lucky for the nurses, the shots, and the insurance.
According to the girls' pediatrician, RSV is one of the most common viruses out there. Most of the time it presents itself as a regular cold. But if you are a newborn -- especially one who was born prematurely, RSV infection can cause serious lung problems. It can even kill.
Enter Synagis, the shot that gives immunity to RSV. I can only imagine that Synagis is made from the diamond-dusted tears and melodious sighs of garden sprites, because one infant-sized syringe of the stuff costs something like twelve hundred dollars. And the immunity only lasts about one month per shot. So during RSV season, most kids will get three or four doses.
After much back and forth between the insurance company, the pediatrician's office, and me, everything eventually got set up for Little A to begin her Synagis shots. While it was complicated and a bit confusing to get her approved, the actual process of getting her the meds since the approval has been very orderly and easy. Once a month I get a call to tell me when the medication will arrive. It shows up in a cold pack via Fed Ex, and I have to throw it in the fridge as soon as it comes to the house. The day the package arrives, I also get a call from a home health care nurse who schedules an appointment for the next day.
Home nurse visits are fabulous! The nurses have all been gentle and kind to Little A. They have also been sweet to Big A, who invariably gets a tad jealous of all the attention being heaped on her sister and is compelled to either break dance in a princess costume or streak naked through the living room at some point.
So, right now I'm feeling very appreciative and lucky for the nurses, the shots, and the insurance.
Monday, April 16, 2007
Fabulous, Wine-soaked Sunday
We watched the nieces three times in the past few weeks, and in the spirit of quid pro quo, DH's sister offered to take our brood off our hands on Sunday. DH and I spent the afternoon eating our way through wine country. We washed everything down with spirits of every color and felt the years and stress fall away.
It was getting dark so we headed back to SIL's house to pick up the brood. "We haven't eaten yet," SIL said. "Why don't you go back out again for awhile and come back when we're done?"
So, we toddled off on foot to a nearby restaurant, where we had coffee and our second(!) dessert of the evening.
This is a step back in my quest to lose the rest of the baby weight I'm still carrying around. But right now I'm still feeling extremely satisfied. It was worth the extra miles I'm going to have to walk to get the calories off!
It was getting dark so we headed back to SIL's house to pick up the brood. "We haven't eaten yet," SIL said. "Why don't you go back out again for awhile and come back when we're done?"
So, we toddled off on foot to a nearby restaurant, where we had coffee and our second(!) dessert of the evening.
This is a step back in my quest to lose the rest of the baby weight I'm still carrying around. But right now I'm still feeling extremely satisfied. It was worth the extra miles I'm going to have to walk to get the calories off!
Thursday, April 12, 2007
More Gifts of Parenthood
"Sweetie, do you need to go to the bathroom?"
"Nope. I already went in the bathtub."
"Nope. I already went in the bathtub."
Wednesday, April 11, 2007
The Gifts of Parenthood
"Here you go, Mama."
"Oh sweetie, thank you! Uh ... what is it?"
"I dunno. It came out of my nose."
"Oh sweetie, thank you! Uh ... what is it?"
"I dunno. It came out of my nose."
Tuesday, April 10, 2007
Easter Weekend!
Eldest Niece had her third birthday party on Saturday. It was a nice warmup for the sugarshock known as Easter that took place at our house on Sunday. As one can see from this photo, even little A, who only gets drunk on candy indirectly via her mommy, had to sleep it off after the birthday party.
Things DH & I Learned This Weekend
1)Dressing a three-year-old child in a white frilly skirt is cute for about three minutes. Then very stupid. By the end of Easter Big A looked like the "before" picture for a laundry detergent commercial. Except I don't think the skirt is going to be completely clean in any "after" scenario.
2) Bubble machine: Equivalent of the adult open bar for small children when it comes to ice breakers. Best $8.50 spent, ever. Let's get this party started!
3) Bubble solution, pink sidewalk chalk, and spit-up jellybeans combine to form a very strong epoxy when applied to toddler hair and just about anything else.
Backstory 3: Complications
Endless water, mostly calm. No horizon and no bottom sighted. I was just swimming the crawl. Stroke, stroke, stroke, breathe. Stroke, stroke, stroke, breathe. Stroke, stroke, ...
When the time came for the next breath, I skipped it. Just a little mistake, but no need to break my stroke pattern. I could continue and take a bigger breath when the next time came. Stroke, stroke, stroke ...
But wait, I'd missed breathing again. Now I really needed to gasp. Time turn my head out of the water.
But I couldn't turn. And the burning need for air consumed me.
Now I remembered the D&E. I was not swimming, I was having surgery. Something was wrong. Around me I heard the hums and mechanical sounds of the OR. Someone, a woman -- maybe Dr. Surgeon -- was talking to another woman.
"Does it say trisomy 21 in there?" She said. "That's wrong. You need to correct it. It's trisomy 18. Completely different animal."
I felt a searing pain in my belly button. The sensation of not being able to breathe got worse, and I tried breathe, scream, kick. Nothing happened. The pain increased. It felt like someone was shoving a pipe through my navel. Oh God, were they cutting me? Why couldn't I breathe? I needed to breathe! I flashed to a thought of my husband upstairs in the hospital waiting room, completely unaware that something was wrong. And then a line was crossed. I knew I had gone too long without breathing. I was dying. Colors bled away to black.
After ... a moment? An hour? The world suddenly blinked back on. Unfortunately, the struggle to breathe and the pain picked up where they left off, too. But this time as I struggled I realized that I was moaning. I could make noise! Finally, I managed to get my mouth to form a sentence, "Can't breathe!" I rasped.
Someone was there. A nurse. I couldn't open my eyes, but she murmured that I was ok. I felt her adjust the mask on my face and the hiss of oxygen being turned up high. I started to calm down. I wasn't dead. They wheeled me out of the operating room into recovery. My abdomen ached. Not the cramping I had expected, but the jangly pangs that come after being cut. I didn't feel coherent enough to ask what happened yet. Also, I didn't really want to know.
It was the Friday before Christmas weekend in the hospital, and not many surgeries were scheduled that day. There was only one other person in the recovery room. My nurse asked me what my pain level was and injected some medication into my IV. She seemed busy, despite the fact the room was mostly empty, she was a constant whirl of brisk motion around the bed and equipment. But she was calm and had a soothing voice, and that was a blessing. She told me what time it was when I asked, said that I was in acute care recovery because I'd had a complication and needed emergency laparoscopy in addition to the D&E. She said my doctor would come and tell me about it soon.
Another woman came in the room to see me. She said, "You probably don't remember me, but I was your nurse during surgery." And then she made what I guess she thought was a joke, but it stung me: "I know you said it felt like you couldn't breathe. But we knew you could, because you you said you couldn't." I realized that made sense -- if you can talk, you can breathe. But, I felt embarrassed for feeling such panic in the OR. I knew I wouldn't be telling anyone else about what I'd experienced while I was still in the hospital.
While I still felt like I was falling backwards into a pool of black every time I closed my eyes, by the time the doctor arrived, I could at least focus my eyes clearly when they were open. I studied Dr. Surgeon's face as she crossed the recovery room in her blue scrubs. She looked serious. This couldn't be good.
"I perforated your uterus in the D&E," she said. "I performed laparoscopy to repair it. That's why you have an incision under your navel as well as two incisions on your belly."
Ah.
"I know we talked about you trying to conceive quickly after this, but the perforation changes things," Dr. Surgeon continued. "It's in a poor location -- up high, where your uterus is the thinnest and weakest during pregnancy. So, I think that you should wait three or four months before trying again to ensure that it heals well.
She paused. "Also, due to the site of the perforation, I'm not sure that it's advisable for you to have another vaginal birth in the future. Cesareans are probably the safest bet. But, we can talk more about that later." She said she'd call in a prescription for pain meds for me and asked if I had any questions.
It wasn't so much a question as a plea. "Can I go home now?" I desperately wanted to get out of there.
"People who have laparoscopy usually do it outpatient. So yes, if everything goes all right in recovery, then you can go home today."
After Dr. Surgeon left, my recovery room nurse came back. She quietly explained that because acute care recovery is a sterile area, visitors are not normally allowed. But it was so quiet that day ... and, I suspect, she felt sorry for me after hearing what had occurred. Would I want to see my husband if she could find him and bring him back to see me?
I couldn't speak. Tears were closing off my throat, so I just nodded vigorously. I could have kissed her. Seeing DH was better than morphine.
When the time came for the next breath, I skipped it. Just a little mistake, but no need to break my stroke pattern. I could continue and take a bigger breath when the next time came. Stroke, stroke, stroke ...
But wait, I'd missed breathing again. Now I really needed to gasp. Time turn my head out of the water.
But I couldn't turn. And the burning need for air consumed me.
Now I remembered the D&E. I was not swimming, I was having surgery. Something was wrong. Around me I heard the hums and mechanical sounds of the OR. Someone, a woman -- maybe Dr. Surgeon -- was talking to another woman.
"Does it say trisomy 21 in there?" She said. "That's wrong. You need to correct it. It's trisomy 18. Completely different animal."
I felt a searing pain in my belly button. The sensation of not being able to breathe got worse, and I tried breathe, scream, kick. Nothing happened. The pain increased. It felt like someone was shoving a pipe through my navel. Oh God, were they cutting me? Why couldn't I breathe? I needed to breathe! I flashed to a thought of my husband upstairs in the hospital waiting room, completely unaware that something was wrong. And then a line was crossed. I knew I had gone too long without breathing. I was dying. Colors bled away to black.
After ... a moment? An hour? The world suddenly blinked back on. Unfortunately, the struggle to breathe and the pain picked up where they left off, too. But this time as I struggled I realized that I was moaning. I could make noise! Finally, I managed to get my mouth to form a sentence, "Can't breathe!" I rasped.
Someone was there. A nurse. I couldn't open my eyes, but she murmured that I was ok. I felt her adjust the mask on my face and the hiss of oxygen being turned up high. I started to calm down. I wasn't dead. They wheeled me out of the operating room into recovery. My abdomen ached. Not the cramping I had expected, but the jangly pangs that come after being cut. I didn't feel coherent enough to ask what happened yet. Also, I didn't really want to know.
It was the Friday before Christmas weekend in the hospital, and not many surgeries were scheduled that day. There was only one other person in the recovery room. My nurse asked me what my pain level was and injected some medication into my IV. She seemed busy, despite the fact the room was mostly empty, she was a constant whirl of brisk motion around the bed and equipment. But she was calm and had a soothing voice, and that was a blessing. She told me what time it was when I asked, said that I was in acute care recovery because I'd had a complication and needed emergency laparoscopy in addition to the D&E. She said my doctor would come and tell me about it soon.
Another woman came in the room to see me. She said, "You probably don't remember me, but I was your nurse during surgery." And then she made what I guess she thought was a joke, but it stung me: "I know you said it felt like you couldn't breathe. But we knew you could, because you you said you couldn't." I realized that made sense -- if you can talk, you can breathe. But, I felt embarrassed for feeling such panic in the OR. I knew I wouldn't be telling anyone else about what I'd experienced while I was still in the hospital.
While I still felt like I was falling backwards into a pool of black every time I closed my eyes, by the time the doctor arrived, I could at least focus my eyes clearly when they were open. I studied Dr. Surgeon's face as she crossed the recovery room in her blue scrubs. She looked serious. This couldn't be good.
"I perforated your uterus in the D&E," she said. "I performed laparoscopy to repair it. That's why you have an incision under your navel as well as two incisions on your belly."
Ah.
"I know we talked about you trying to conceive quickly after this, but the perforation changes things," Dr. Surgeon continued. "It's in a poor location -- up high, where your uterus is the thinnest and weakest during pregnancy. So, I think that you should wait three or four months before trying again to ensure that it heals well.
She paused. "Also, due to the site of the perforation, I'm not sure that it's advisable for you to have another vaginal birth in the future. Cesareans are probably the safest bet. But, we can talk more about that later." She said she'd call in a prescription for pain meds for me and asked if I had any questions.
It wasn't so much a question as a plea. "Can I go home now?" I desperately wanted to get out of there.
"People who have laparoscopy usually do it outpatient. So yes, if everything goes all right in recovery, then you can go home today."
After Dr. Surgeon left, my recovery room nurse came back. She quietly explained that because acute care recovery is a sterile area, visitors are not normally allowed. But it was so quiet that day ... and, I suspect, she felt sorry for me after hearing what had occurred. Would I want to see my husband if she could find him and bring him back to see me?
I couldn't speak. Tears were closing off my throat, so I just nodded vigorously. I could have kissed her. Seeing DH was better than morphine.
Tuesday, April 3, 2007
Backstory 2: Diagnosis of Trisomy 18 and Prepping for the D&E
With all the brash, ugly drama that surrounds abortion in general, let alone second trimester abortion, you would think that there would be a great deal of discussion and debate amongst medical professionals and pregnant women about what should be done when a poor prenatal diagnosis is made. I can't speak for others, but for me, I found that when I was in a real abortion situation vs. a theoretical debate, the world got very , very quiet. DH and I spent the three weeks between our positive screening test and the amnio results researching Trisomy 18. We read everything from textbook descriptions of the disorder to memorial websites for T18 babies authored by prolife parents who urged others to carry their sick babies to term. But no medical personnel involved in my and the baby's care ever offered any opinion on what we should do. Nobody even offered us any sort of way to frame such a decision. So we muddled through on gut instinct.
Our decision was ultimately based on three factors: 1) What would the baby's quality of life be if we carried her to term? 2) What would our whole family's quality of life be like if we carried to term? 3) What scenario was the safest thing for me, healthwise?
In a way, DH and I were lucky: the answers to our three questions did not conflict with one another. From everything we read, we felt the baby would have a miserable quality of life and would likely not survive longer than a few weeks or months. We were certain that continuing a doomed pregnancy would severely limit our ability to meet the demands of parenting Big A, then just two years old. I also feared the inevitable strain on my marriage and psyche. And healthwise, we knew it was statistically safer to terminate than it was to carry to term. For us, everything seemed to point toward interrupting the pregnancy as the best of two crappy choices.
Since the genetic counselor was the one who called with our bad news about the trisomy 18, she was the one that got to ask the question first: "Do you want to continue the pregnancy?" When I said I didn't think I did, she said she would call my OB for me and have her call me back shortly. In the meantime, I broke the news to my husband.
The rest of the family seemed truly shocked as we told them, almost as if it had not occurred to them that we were serious about the baby's likely problems when we'd broken the news earlier about screening positive (with a 1 in 5 calculated risk for T18) in the NT scan/maternal serum test. But DH and I were actually a little bit relieved at this point. Waiting for the diagnosis after the positive screening had been a special sort of hell. Now at least people would stop telling us to keep our fucking chins up. Now at least people would understand why we had been so distraught.
My OB called within the hour. She let out a deep sigh and said "I'm so terribly sorry." She asked me if I wanted to continue the pregnancy and I said no. Then I asked her if she thought this was a good decision, and she truly seemed at a loss for words for a moment, as though patients did not usually ask for her opinion in this matter. "Yes," she finally said. "I think it's a good decision."
We talked about my recent diagnosis of complete placenta previa -- a condition where the placenta implants directly over the cervix. If I went into labor with the placenta in this location, it would tear when my cervix dilated, cutting off the baby's oxygen and putting me at risk for extreme blood loss. Women with previas require a c section because of this. The perinatologist who did our amnio had diagnosed the previa and said that he didn't think mine would resolve on its own, so I should be prepared for a c section delivery if the baby turned out to be ok. Now that we knew the baby had a fatal disorder, I wondered if terminating the pregnancy could be done via the normal/common method (dilation and evacuation) given the complete previa.
My OB admitted she didn't know the answer to that question, but said she would find out for me. This is also when I learned that my own doctor would not be the one performing my termination. The idea of going to someone else was overwhelming, but my OB explained that she couldn't do it because she hadn't been trained to do the procedure that was needed at this point in the pregnancy. She said she knew two doctors that she trusted who could do it for me, though. She would call them and see who was available.
But we had a complicating factor: With Christmas just a few days away, there was a real likelihood the termination would not be scheduled until after the holiday. The idea of going through Christmas pregnant and knowing what was to come was just terrible. But I thanked her for at least warning me, so it wouldn't come as a nasty surprise.
Within a half hour or so I got another call. It was a the referral OB (whom for clarity's sake I'll simply call Dr. Surgeon here).
"I'm really sorry to hear about your baby," Dr. Surgeon said. "I wanted to let you know that I've rearranged my schedule and made some calls to the hospital and managed to get an OR and a team pulled together. I wasn't sure if it could happen at first because of the holiday schedule, but it looks like we can do the procedure tomorrow."
"Thank you so much," I said, choking back tears.
"You're welcome," Surgeon said. "You do have to come in today, though. We need to start dilating your cervix overnight so we can do the procedure tomorrow morning."
I hung up and quickly arranged to have Big A, then barely two years old, watched by relatives. We had opted not to tell her about the pregnancy until later, a decision that I was so thrilled about at that moment. At least our first discussion about death with her didn't have to be about this.
DH and I went to Surgeon's office. Surgeon was a regular OB, so her waiting room was filled with happily pregnant people and posters extolling how to conceive and maintain happy, healthy pregnancies. Luckily there were no windows to jump out of. We were also lucky that the receptionist had been briefed on our situation and didn't loudly interrogate us regarding the reason for our appointment.
We were shown into a room eventually and I was told to put on a gown. Surgeon arrived and talked for a few minutes. Even though we knew what the answer was, we asked if there was anything we might have done that had caused the trisomy 18, and Surgeon said it was just a random error -- probably I ovulated an egg that was poorly formed, and we had the bad luck of trying to conceive that particular month. Because I was nearly 35, the risk of it happening again was probably less than a two percent.
Surgeon explained that she was going to insert laminaria, sticks made of seaweed, into my cervix so that it would dry out and naturally dilate overnight. Since I was 16 weeks pregnant, she would only need to do laminaria insertions once -- later pregnancies need more. She said laminaria were more gentle than simply using mechanical dilaters during the procedure. "[Your OB] and I want to preserve your ability to have future vaginal deliveries," she said. Surgeon added that while I couldn't go through labor and delivery with a placenta previa, that I could have dilation and evacuation (or a "D&E") with it safely at this point.
"I know this isn't going to be the happiest Christmas ever for you," she said. "But, I think getting this over with before the holiday will be better than the other option." She said that we could try again as soon as I got a regular period back again.
Then, she told us about the D&E itself. It would be done under general anesthesia and take about 15 minutes. Most of the time I was in recovery would just be sleeping off the anesthesia. I would be in pain afterwards -- like a bad period. But regular Tylenol or Advil would take the edge off. She said to take it easy once I got home from the hospital for a day, and to resume normal activities as I felt up to it after that.
"There are a few possible complications," she said. "But they are rare. Statistically, D&Es are safer for women than giving birth. Things that might go wrong include that you might get an infection afterwards that requires antibiotics. Or you might need a D&C later on, if I didn't manage to clean your uterus out as completely as I should. Also, if I slip with an instrument there is a chance I could perforate your uterus." She smiled. "I've been doing this procedure for ten years, and I haven't perforated anyone yet. Likely everything will go just fine for you."
She asked if we had anymore questions before she did the laminaria insertion. I said I did. "Afterwards, I know we can't see the baby ... but could we arrange to have the remains cremated? Or could we at least get footprints to keep?"
Surgeon shook her head no. She didn't elaborate why, and I couldn't bear to ask.
Our decision was ultimately based on three factors: 1) What would the baby's quality of life be if we carried her to term? 2) What would our whole family's quality of life be like if we carried to term? 3) What scenario was the safest thing for me, healthwise?
In a way, DH and I were lucky: the answers to our three questions did not conflict with one another. From everything we read, we felt the baby would have a miserable quality of life and would likely not survive longer than a few weeks or months. We were certain that continuing a doomed pregnancy would severely limit our ability to meet the demands of parenting Big A, then just two years old. I also feared the inevitable strain on my marriage and psyche. And healthwise, we knew it was statistically safer to terminate than it was to carry to term. For us, everything seemed to point toward interrupting the pregnancy as the best of two crappy choices.
Since the genetic counselor was the one who called with our bad news about the trisomy 18, she was the one that got to ask the question first: "Do you want to continue the pregnancy?" When I said I didn't think I did, she said she would call my OB for me and have her call me back shortly. In the meantime, I broke the news to my husband.
The rest of the family seemed truly shocked as we told them, almost as if it had not occurred to them that we were serious about the baby's likely problems when we'd broken the news earlier about screening positive (with a 1 in 5 calculated risk for T18) in the NT scan/maternal serum test. But DH and I were actually a little bit relieved at this point. Waiting for the diagnosis after the positive screening had been a special sort of hell. Now at least people would stop telling us to keep our fucking chins up. Now at least people would understand why we had been so distraught.
My OB called within the hour. She let out a deep sigh and said "I'm so terribly sorry." She asked me if I wanted to continue the pregnancy and I said no. Then I asked her if she thought this was a good decision, and she truly seemed at a loss for words for a moment, as though patients did not usually ask for her opinion in this matter. "Yes," she finally said. "I think it's a good decision."
We talked about my recent diagnosis of complete placenta previa -- a condition where the placenta implants directly over the cervix. If I went into labor with the placenta in this location, it would tear when my cervix dilated, cutting off the baby's oxygen and putting me at risk for extreme blood loss. Women with previas require a c section because of this. The perinatologist who did our amnio had diagnosed the previa and said that he didn't think mine would resolve on its own, so I should be prepared for a c section delivery if the baby turned out to be ok. Now that we knew the baby had a fatal disorder, I wondered if terminating the pregnancy could be done via the normal/common method (dilation and evacuation) given the complete previa.
My OB admitted she didn't know the answer to that question, but said she would find out for me. This is also when I learned that my own doctor would not be the one performing my termination. The idea of going to someone else was overwhelming, but my OB explained that she couldn't do it because she hadn't been trained to do the procedure that was needed at this point in the pregnancy. She said she knew two doctors that she trusted who could do it for me, though. She would call them and see who was available.
But we had a complicating factor: With Christmas just a few days away, there was a real likelihood the termination would not be scheduled until after the holiday. The idea of going through Christmas pregnant and knowing what was to come was just terrible. But I thanked her for at least warning me, so it wouldn't come as a nasty surprise.
Within a half hour or so I got another call. It was a the referral OB (whom for clarity's sake I'll simply call Dr. Surgeon here).
"I'm really sorry to hear about your baby," Dr. Surgeon said. "I wanted to let you know that I've rearranged my schedule and made some calls to the hospital and managed to get an OR and a team pulled together. I wasn't sure if it could happen at first because of the holiday schedule, but it looks like we can do the procedure tomorrow."
"Thank you so much," I said, choking back tears.
"You're welcome," Surgeon said. "You do have to come in today, though. We need to start dilating your cervix overnight so we can do the procedure tomorrow morning."
I hung up and quickly arranged to have Big A, then barely two years old, watched by relatives. We had opted not to tell her about the pregnancy until later, a decision that I was so thrilled about at that moment. At least our first discussion about death with her didn't have to be about this.
DH and I went to Surgeon's office. Surgeon was a regular OB, so her waiting room was filled with happily pregnant people and posters extolling how to conceive and maintain happy, healthy pregnancies. Luckily there were no windows to jump out of. We were also lucky that the receptionist had been briefed on our situation and didn't loudly interrogate us regarding the reason for our appointment.
We were shown into a room eventually and I was told to put on a gown. Surgeon arrived and talked for a few minutes. Even though we knew what the answer was, we asked if there was anything we might have done that had caused the trisomy 18, and Surgeon said it was just a random error -- probably I ovulated an egg that was poorly formed, and we had the bad luck of trying to conceive that particular month. Because I was nearly 35, the risk of it happening again was probably less than a two percent.
Surgeon explained that she was going to insert laminaria, sticks made of seaweed, into my cervix so that it would dry out and naturally dilate overnight. Since I was 16 weeks pregnant, she would only need to do laminaria insertions once -- later pregnancies need more. She said laminaria were more gentle than simply using mechanical dilaters during the procedure. "[Your OB] and I want to preserve your ability to have future vaginal deliveries," she said. Surgeon added that while I couldn't go through labor and delivery with a placenta previa, that I could have dilation and evacuation (or a "D&E") with it safely at this point.
"I know this isn't going to be the happiest Christmas ever for you," she said. "But, I think getting this over with before the holiday will be better than the other option." She said that we could try again as soon as I got a regular period back again.
Then, she told us about the D&E itself. It would be done under general anesthesia and take about 15 minutes. Most of the time I was in recovery would just be sleeping off the anesthesia. I would be in pain afterwards -- like a bad period. But regular Tylenol or Advil would take the edge off. She said to take it easy once I got home from the hospital for a day, and to resume normal activities as I felt up to it after that.
"There are a few possible complications," she said. "But they are rare. Statistically, D&Es are safer for women than giving birth. Things that might go wrong include that you might get an infection afterwards that requires antibiotics. Or you might need a D&C later on, if I didn't manage to clean your uterus out as completely as I should. Also, if I slip with an instrument there is a chance I could perforate your uterus." She smiled. "I've been doing this procedure for ten years, and I haven't perforated anyone yet. Likely everything will go just fine for you."
She asked if we had anymore questions before she did the laminaria insertion. I said I did. "Afterwards, I know we can't see the baby ... but could we arrange to have the remains cremated? Or could we at least get footprints to keep?"
Surgeon shook her head no. She didn't elaborate why, and I couldn't bear to ask.
Monday, April 2, 2007
Backstory 1: The Beginning of the Bad
When DH and I decided to try to start a family, we both worried. I grew up hearing about my mother's multiple miscarriages and her heartbreaking stillbirth, so unlike many who naively jump into trying to conceive who figure that they'll be hatching a cute little baby bump in no time, I didn't think the sperm and egg would automatically get together post-haste.
So, when got knocked up the very first month we tried, I was happily shocked, but still nervous that my mother's infertility history was something she'd passed along. The first trimester every time I went to the bathroom, I was sure that I'd find blood in my underwear. But despite a terrible morning sickness that lasted for 20 weeks and then terrible leg swelling that lasted the rest of the pregnancy, things kept chugging along. Ten days past her due date Big A made her entrance into the world. While it wasn't a "textbook" perfect delivery, I had pushed her out by myself, and she was ok in the end, so despite the liberal oozing of both Big A's and my bodily fluids, I was pretty enthusiastic about the birthing process. I remember telling a delivery nurse "Oh, that was ... FUN!" after it was all over and she was cleaning me up. Labor had hurt like hell, but it was also so amazing and interesting that the only word I could come up with to describe it was "fun." While poor DH was fairly shell shocked and told me that he would understand if I never wanted to go through that again, I was certain that I wanted to have another baby at some point, even just hours after grunting through the marathon of contractions.
When we decided to try to get pregnant a second time, the whole issue of whether sperm and egg could get together wasn't something we dwelled on. In fact, DH and I were pretty blase about everything to do with the second pregnancy: we told people we were expecting before I was showing, and made lots of plans for the impending birth well before I was out of the first trimester.
I only had one nagging, quiet worry in the next pregnancy. There was no morning sickness. How could that be, I sometimes wondered. How could I be so sick for so long with Big A, but not have any illness to speak of the second time around? But it was easy to laugh off the worry, or ignore it. At least until my nuchal translucency and maternal serum screening test came back positive for Trisomy 18. We got the results when I was past the window for a CVS test, so we had to wait until I was further into the second trimester to get an amniocentesis to confirm or deny the findings of the screening test.
People throw around words like agony and torture cavalierly. But the agony DH and I felt during the three weeks between screening positive for T18 and confirming that diagnosis via amnio were agonizing and tortuous is an old school, biblical sort of way. The first time I read about Trisomy 18 online I nearly vomited and had to lie down for awhile. The phrase not compatible with life seared my brain. The description of the defects associated with the disorder were overwhelmingly serious and numerous. I had never felt so bleak.
Our friends and family did not grasp the depths of DH's and my desperation at first. They meant well. Really. But, they didn't understand that advising us to "just not think about it" until we had the amnio results was impossible. They thought sharing stories of neighbors and cousins and coworkers who'd gone through similar worrisome scenarios that had turned out just fine would give us hope, rather than alienate us. Every pregnancy has a scare, they'd say. Everyone made it really clear that they would be there to cheer for us when we got good news.
Nobody, not even my OB, brought up what the options would be for the pregnancy if it didn't turn out to be good news. No one at all felt we needed to talk about that right now.
In the center of that cloud of positivity and good intentions DH and I sat alone, frightened, bewildered. We had to figure out what to do next. We had to consider all the options, not just the good ones. Because whenever I had the courage to sit quietly with my thoughts about our situation, my instincts blew through me like an icy draft. I was fairly certain my baby was not ok.
Three days before Christmas the genetic counselor called us with the amnio results. She was jittery and stammered when announcing the news. I told her I wasn't surprised.
Everyone else was extremely shocked and horrified at the idea that the baby had a terminal disease. Nobody really knew what to say. Me, I had precooked Christmas dinner and wrapped all the gifts for Big A early, knowing that in all likelihood, her parents were not going to be up for last-minute shopping or party planning once they found out their baby was going to die.
So, when got knocked up the very first month we tried, I was happily shocked, but still nervous that my mother's infertility history was something she'd passed along. The first trimester every time I went to the bathroom, I was sure that I'd find blood in my underwear. But despite a terrible morning sickness that lasted for 20 weeks and then terrible leg swelling that lasted the rest of the pregnancy, things kept chugging along. Ten days past her due date Big A made her entrance into the world. While it wasn't a "textbook" perfect delivery, I had pushed her out by myself, and she was ok in the end, so despite the liberal oozing of both Big A's and my bodily fluids, I was pretty enthusiastic about the birthing process. I remember telling a delivery nurse "Oh, that was ... FUN!" after it was all over and she was cleaning me up. Labor had hurt like hell, but it was also so amazing and interesting that the only word I could come up with to describe it was "fun." While poor DH was fairly shell shocked and told me that he would understand if I never wanted to go through that again, I was certain that I wanted to have another baby at some point, even just hours after grunting through the marathon of contractions.
When we decided to try to get pregnant a second time, the whole issue of whether sperm and egg could get together wasn't something we dwelled on. In fact, DH and I were pretty blase about everything to do with the second pregnancy: we told people we were expecting before I was showing, and made lots of plans for the impending birth well before I was out of the first trimester.
I only had one nagging, quiet worry in the next pregnancy. There was no morning sickness. How could that be, I sometimes wondered. How could I be so sick for so long with Big A, but not have any illness to speak of the second time around? But it was easy to laugh off the worry, or ignore it. At least until my nuchal translucency and maternal serum screening test came back positive for Trisomy 18. We got the results when I was past the window for a CVS test, so we had to wait until I was further into the second trimester to get an amniocentesis to confirm or deny the findings of the screening test.
People throw around words like agony and torture cavalierly. But the agony DH and I felt during the three weeks between screening positive for T18 and confirming that diagnosis via amnio were agonizing and tortuous is an old school, biblical sort of way. The first time I read about Trisomy 18 online I nearly vomited and had to lie down for awhile. The phrase not compatible with life seared my brain. The description of the defects associated with the disorder were overwhelmingly serious and numerous. I had never felt so bleak.
Our friends and family did not grasp the depths of DH's and my desperation at first. They meant well. Really. But, they didn't understand that advising us to "just not think about it" until we had the amnio results was impossible. They thought sharing stories of neighbors and cousins and coworkers who'd gone through similar worrisome scenarios that had turned out just fine would give us hope, rather than alienate us. Every pregnancy has a scare, they'd say. Everyone made it really clear that they would be there to cheer for us when we got good news.
Nobody, not even my OB, brought up what the options would be for the pregnancy if it didn't turn out to be good news. No one at all felt we needed to talk about that right now.
In the center of that cloud of positivity and good intentions DH and I sat alone, frightened, bewildered. We had to figure out what to do next. We had to consider all the options, not just the good ones. Because whenever I had the courage to sit quietly with my thoughts about our situation, my instincts blew through me like an icy draft. I was fairly certain my baby was not ok.
Three days before Christmas the genetic counselor called us with the amnio results. She was jittery and stammered when announcing the news. I told her I wasn't surprised.
Everyone else was extremely shocked and horrified at the idea that the baby had a terminal disease. Nobody really knew what to say. Me, I had precooked Christmas dinner and wrapped all the gifts for Big A early, knowing that in all likelihood, her parents were not going to be up for last-minute shopping or party planning once they found out their baby was going to die.
Sunday, April 1, 2007
And Then There Was One ...
... Healthy person left in the house. Dear Husband is the last one standing. We are dropping like flies from Big A's plague.
Little A started acting off a few days after Big A. No fever, but some coughing. She developed a forlorn little cry that had the effect of Ginsu knives on the rusty tin can of my heart. I am not the type of mama who typically wells up when my kids get vaccinated or skin a knee. But this new cry was so honestly sad and pained that I was edgy and nervous for for the rest of the week. Sometimes I'd think she was a little hot, but just when I'd get my act together enough to get the thermometer out of the medicine cabinet, she'd feel cool to the touch. She continues to cough a little, but it is mostly dry, and her nose isn't runny at all. She is usually such a smiley baby, but she was fussy and frowny, and so I was on edge and enveloped in a cloud of hazy worry
As of last night, I am all too aware of what caused the heart-breaking cries in Little A. My neck started to get achy last night just as the nieces both arrived at our house for babysitting (sister-in-law's husband was turning 40 and they were needing a child-free evening of celebration). I figured it was stiffness from pruning trees earlier in the day. But as Big A and the nieces swirled around the house in early-play date tornado mode and Little A was mournfully mewing in discomfort, the neck stiffness quickly spread down my spine and legs. I was flat out in bed and quivering like Little A in less than an hour.
The bad news? I wasted most of Sunday, our family fun day, laying in bed. The good news? Because it was Sunday, DH was home to take care of the kids and I could lay around in bed! I did manage to nurse the baby multiple times and drag my butt into the kitchen to make cookies with Big A. But, that level of activity is about 1/1000th of usual. DH was a real peach and no doubt when inevitably comes down with the plague tomorrow or the next day, I will similarly spot him all parenting duties while he lays around moaning.
Being sick used to drive me utterly nuts. Pre-kids, I focused on the mucous and the coughs and how annoying it was to not be up to full capacity. I was so annoyed and impatient when I got ill. But I was just talking to a childless friend of mine who was bitching about this killer sore throat in exactly the same way I would have done four or five years ago: It was torturing him, he called in sick for days, and even ended up calling his doctor brother and begging for a vicoden RX, which he then complained left him feeling fuzzy-headed. And the thing was, I had the EXACT same sore throat he was describing while we were talking on the phone, and it hadn't even occurred to me to mention it to him! It really hadn't stopped me from dragging myself through my life. In fact, I'd been feeling pretty grateful it was just a sore throat, because a handful of Advil now and then can usually take care of that, whereas a fever or chills and aches put a kink in the usual daily routine.
I guess one of the benefits of having a bunch of medical mishaps in the last year is that I now have a completely revised pain scale:
Wabi's New Pain Scale
1) Horsefly bites. Those suckers draw blood!
2) Stubbed toes
3) Cold sores on your tongue, so every word or bite rubs it
4) A bad sore throat
5) A fever
6) A sprained ankle
7) Food poisoning/Montezuma's Revenge
8) Big A's labor, pre-epidural
9) Uterine perforation & intraoperative awareness during the emergency laparoscopy to repair the perf.
10) Uterine rupture in pregnancy ... contractions with the baby's feet extruded through a hole in the top of your womb hurts WAY WORSE than regular old contractions. Plus, internal bleeding feels like being stabbed.
Little A started acting off a few days after Big A. No fever, but some coughing. She developed a forlorn little cry that had the effect of Ginsu knives on the rusty tin can of my heart. I am not the type of mama who typically wells up when my kids get vaccinated or skin a knee. But this new cry was so honestly sad and pained that I was edgy and nervous for for the rest of the week. Sometimes I'd think she was a little hot, but just when I'd get my act together enough to get the thermometer out of the medicine cabinet, she'd feel cool to the touch. She continues to cough a little, but it is mostly dry, and her nose isn't runny at all. She is usually such a smiley baby, but she was fussy and frowny, and so I was on edge and enveloped in a cloud of hazy worry
As of last night, I am all too aware of what caused the heart-breaking cries in Little A. My neck started to get achy last night just as the nieces both arrived at our house for babysitting (sister-in-law's husband was turning 40 and they were needing a child-free evening of celebration). I figured it was stiffness from pruning trees earlier in the day. But as Big A and the nieces swirled around the house in early-play date tornado mode and Little A was mournfully mewing in discomfort, the neck stiffness quickly spread down my spine and legs. I was flat out in bed and quivering like Little A in less than an hour.
The bad news? I wasted most of Sunday, our family fun day, laying in bed. The good news? Because it was Sunday, DH was home to take care of the kids and I could lay around in bed! I did manage to nurse the baby multiple times and drag my butt into the kitchen to make cookies with Big A. But, that level of activity is about 1/1000th of usual. DH was a real peach and no doubt when inevitably comes down with the plague tomorrow or the next day, I will similarly spot him all parenting duties while he lays around moaning.
Being sick used to drive me utterly nuts. Pre-kids, I focused on the mucous and the coughs and how annoying it was to not be up to full capacity. I was so annoyed and impatient when I got ill. But I was just talking to a childless friend of mine who was bitching about this killer sore throat in exactly the same way I would have done four or five years ago: It was torturing him, he called in sick for days, and even ended up calling his doctor brother and begging for a vicoden RX, which he then complained left him feeling fuzzy-headed. And the thing was, I had the EXACT same sore throat he was describing while we were talking on the phone, and it hadn't even occurred to me to mention it to him! It really hadn't stopped me from dragging myself through my life. In fact, I'd been feeling pretty grateful it was just a sore throat, because a handful of Advil now and then can usually take care of that, whereas a fever or chills and aches put a kink in the usual daily routine.
I guess one of the benefits of having a bunch of medical mishaps in the last year is that I now have a completely revised pain scale:
Wabi's New Pain Scale
1) Horsefly bites. Those suckers draw blood!
2) Stubbed toes
3) Cold sores on your tongue, so every word or bite rubs it
4) A bad sore throat
5) A fever
6) A sprained ankle
7) Food poisoning/Montezuma's Revenge
8) Big A's labor, pre-epidural
9) Uterine perforation & intraoperative awareness during the emergency laparoscopy to repair the perf.
10) Uterine rupture in pregnancy ... contractions with the baby's feet extruded through a hole in the top of your womb hurts WAY WORSE than regular old contractions. Plus, internal bleeding feels like being stabbed.
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