Sunday, October 24, 2010
Good things
Jeremy felt the first kick from our little girl earlier this week. Maggie had the next turn, just yesterday, and then finally today, James was able to catch a kick. Hopefully that will satisfy the kids for a while. They have been anxious to be a part of the pregnancy in this way.
Comfort, convenience and cost
My rant of the day is about doctors again.
We are currently processing the disturbing information from all the various specialists that
a) If John really had what the doctors at the time all said he had, then this baby probably will have it too, and it could likely be more severe (including fatal)
b) If that is the case (that this baby has the condition, called NAIT), then we could use a therapy (weekly IVIg) that has been shown to be reasonably effective (improving the situation in >80% of cases where used in clinical trials). However, no doctor is willing to approve this therapy for me because our lab tests are "inconclusive" that John really had this, so the treatment is "inappropriate" without a concrete diagnosis.
c) So, we can opt to trust the doctors who are now all backpedaling and saying John probably never had NAIT; nothing to worry about. No treatment needed. But, by the way, we think you should have a C-section, "just in case."
d) Or, we can demand the IVIg therapy. In that case, the doctors tell me, we will probably face paying for it ourselves, since they can't give a "definitive diagnosis" of its medical necessity. This is daunting. (I have heard $2000-$3000 week until the birth). And I am left not sure whether all the doctors really don't think we need it, or just don't think we need it definitively enough that they want to stick their neck out with the insurance company and demand payment. So, they are instead apparently trying to talk me out of the whole idea.
The first doctor explained that she wouldn't recommend IVIg, because it could be inconvenient and expensive. And John's case of NAIT was mild, so this next baby was unlikely to have a very severe case, either. When I questioned her a bit further about why not IVIg "just in case," , she responded with a dumbfounded tone of voice: "You mean you want the IVIg?" (No, I didn't say I want the IVIg, I said I wanted her to be more convincing that it wasn't worthwhile in my case. Because if it might be, I want to do it.)
The next doctor just categorically refused the IVIg for me. "I can't give you that without a diagnosis of NAIT. What we have now is a good theory, but without confirming lab tests, it is just a theory. There is no proof that John had NAIT at all"
So now, I am pressing the third doctor: "What would be the disadvantages in taking IVIg, on the chance that it would help this baby?" Now I start to get the really obnoxious quotes, like, "Well, the treatment is really INCONVENIENT and UNCOMFORTABLE and (in a whisper:) expensive." Now come on, which do you think the doctors are most worried about? As if pregnancy itself isn't inconvenient and uncomfortable. Try a bit harder, huh, doc?
Can you tell that this just made me mad? Maybe they think, because I am balking a bit at an automatic C-section, that I am just a medical wimp. I don't believe this to be the case. I have had surgery for ectopic pregnancy, twice, including one ruptured tube and one ovarian torsion. I have been through IVF twice. I was hospitalized for ovarian hyperstimulation from the IVF. I have been through 3 unmedicated vaginal births. I have been through a "normal" miscarriage. So, I understand INCONVENIENT. I understand UNCOMFORTABLE. I even understand EXPENSIVE. What I am not yet convinced of, though, is whether any of my doctors understand APPROPRIATE BALANCE OF RISKS. With MY BABY.
Obviously, it is now time for me to let go for a while. Back to prayer. Turn it over to God. I certainly can't turn this one over to the doctors.
We are currently processing the disturbing information from all the various specialists that
a) If John really had what the doctors at the time all said he had, then this baby probably will have it too, and it could likely be more severe (including fatal)
b) If that is the case (that this baby has the condition, called NAIT), then we could use a therapy (weekly IVIg) that has been shown to be reasonably effective (improving the situation in >80% of cases where used in clinical trials). However, no doctor is willing to approve this therapy for me because our lab tests are "inconclusive" that John really had this, so the treatment is "inappropriate" without a concrete diagnosis.
c) So, we can opt to trust the doctors who are now all backpedaling and saying John probably never had NAIT; nothing to worry about. No treatment needed. But, by the way, we think you should have a C-section, "just in case."
d) Or, we can demand the IVIg therapy. In that case, the doctors tell me, we will probably face paying for it ourselves, since they can't give a "definitive diagnosis" of its medical necessity. This is daunting. (I have heard $2000-$3000 week until the birth). And I am left not sure whether all the doctors really don't think we need it, or just don't think we need it definitively enough that they want to stick their neck out with the insurance company and demand payment. So, they are instead apparently trying to talk me out of the whole idea.
The first doctor explained that she wouldn't recommend IVIg, because it could be inconvenient and expensive. And John's case of NAIT was mild, so this next baby was unlikely to have a very severe case, either. When I questioned her a bit further about why not IVIg "just in case," , she responded with a dumbfounded tone of voice: "You mean you want the IVIg?" (No, I didn't say I want the IVIg, I said I wanted her to be more convincing that it wasn't worthwhile in my case. Because if it might be, I want to do it.)
The next doctor just categorically refused the IVIg for me. "I can't give you that without a diagnosis of NAIT. What we have now is a good theory, but without confirming lab tests, it is just a theory. There is no proof that John had NAIT at all"
So now, I am pressing the third doctor: "What would be the disadvantages in taking IVIg, on the chance that it would help this baby?" Now I start to get the really obnoxious quotes, like, "Well, the treatment is really INCONVENIENT and UNCOMFORTABLE and (in a whisper:) expensive." Now come on, which do you think the doctors are most worried about? As if pregnancy itself isn't inconvenient and uncomfortable. Try a bit harder, huh, doc?
Can you tell that this just made me mad? Maybe they think, because I am balking a bit at an automatic C-section, that I am just a medical wimp. I don't believe this to be the case. I have had surgery for ectopic pregnancy, twice, including one ruptured tube and one ovarian torsion. I have been through IVF twice. I was hospitalized for ovarian hyperstimulation from the IVF. I have been through 3 unmedicated vaginal births. I have been through a "normal" miscarriage. So, I understand INCONVENIENT. I understand UNCOMFORTABLE. I even understand EXPENSIVE. What I am not yet convinced of, though, is whether any of my doctors understand APPROPRIATE BALANCE OF RISKS. With MY BABY.
Obviously, it is now time for me to let go for a while. Back to prayer. Turn it over to God. I certainly can't turn this one over to the doctors.
Back down the roller coaster
Jeremy and I had a phone consult with Dr. F on Wednesday morning. That put me back in the "discouraged" camp.
Dr. F had in fact emailed Dr. Berkowitz in NYC with a very brief summary of our case (which she cc'd to us). She told us that he then phoned her about 10 minutes later and they talked, and so now she was reporting to us on his recommendations. This was less than satisfying, because this way we really have no way of knowing exactly what was communicated to Dr. Berkowitz about our case. I had assumed that we would be a part of that consult with Dr. Berkowitz. While I really liked Dr. F and her approach, all that she knows about our case is the case notes she read from the other doctors in her practice, and a 5-minute office visit with us. I am therefore not confident that she herself had all the information to pass along to NYC.
In any case, Dr. Berkowitz's recommendation, according to Dr. F, is not that different from where we were:
1) No IVIg medication.
2) At delivery, he recommends either (a) cordocentesis at 37 weeks to determine platelet count and then decide on c-section or (b) just do a c-section
His rationale is based in part on the fact that he is not himself convinced that we had NAIT with John, since the lab tests don't prove the genetic mismatch between Jeremy and me. But, he offered no alternative diagnosis for John's symptoms, either. Granted, he is in maternal-fetal medicine rather than pediatric hematology, but still, it is an answer that feels incomplete to us.
I spent Wednesday feeling very unsettled and disappointed. This is not a diagnosis/treatment plan that reassures me that either our baby will be fine, or we are doing everything we can to ensure that. Rather, it strikes me as a plan that is easiest and cheapest for the doctors to make.
After all, if there is a real risk, then why not deal with it with the IVIg? If there is not a real risk, then why subject our baby (and myself) to the increased risk of a C-section (and possibly cordocentesis)? Yes, I know, C-sections are "routine" for OBs, but I don't consider them such. Of course, I will have a C-section if that makes sense, but it is not a "neutral" treatment choice.
After some thought, Jeremy and I resolved to wait the two weeks for our consult here in GR with Dr. C, one of the pediatric hematologists who treated John. Hopefully, he can at least shed some light on this rapidly growing theory of the maternal-fetal-medicine docs that John never really had NAIT in the first place. It would be nice, but it sounds almost like a theory of convenience rather than evidence at this point. Not a standard upon which I wish to base my baby's care.
After that consult, we will have to decide on the next step. Dr. F. did offer that we could email Dr. Berkowitz directly, if we wish. I think we will wish, but perhaps it will be easier once armed with more info from Dr. C.
Dr. F had in fact emailed Dr. Berkowitz in NYC with a very brief summary of our case (which she cc'd to us). She told us that he then phoned her about 10 minutes later and they talked, and so now she was reporting to us on his recommendations. This was less than satisfying, because this way we really have no way of knowing exactly what was communicated to Dr. Berkowitz about our case. I had assumed that we would be a part of that consult with Dr. Berkowitz. While I really liked Dr. F and her approach, all that she knows about our case is the case notes she read from the other doctors in her practice, and a 5-minute office visit with us. I am therefore not confident that she herself had all the information to pass along to NYC.
In any case, Dr. Berkowitz's recommendation, according to Dr. F, is not that different from where we were:
1) No IVIg medication.
2) At delivery, he recommends either (a) cordocentesis at 37 weeks to determine platelet count and then decide on c-section or (b) just do a c-section
His rationale is based in part on the fact that he is not himself convinced that we had NAIT with John, since the lab tests don't prove the genetic mismatch between Jeremy and me. But, he offered no alternative diagnosis for John's symptoms, either. Granted, he is in maternal-fetal medicine rather than pediatric hematology, but still, it is an answer that feels incomplete to us.
I spent Wednesday feeling very unsettled and disappointed. This is not a diagnosis/treatment plan that reassures me that either our baby will be fine, or we are doing everything we can to ensure that. Rather, it strikes me as a plan that is easiest and cheapest for the doctors to make.
After all, if there is a real risk, then why not deal with it with the IVIg? If there is not a real risk, then why subject our baby (and myself) to the increased risk of a C-section (and possibly cordocentesis)? Yes, I know, C-sections are "routine" for OBs, but I don't consider them such. Of course, I will have a C-section if that makes sense, but it is not a "neutral" treatment choice.
After some thought, Jeremy and I resolved to wait the two weeks for our consult here in GR with Dr. C, one of the pediatric hematologists who treated John. Hopefully, he can at least shed some light on this rapidly growing theory of the maternal-fetal-medicine docs that John never really had NAIT in the first place. It would be nice, but it sounds almost like a theory of convenience rather than evidence at this point. Not a standard upon which I wish to base my baby's care.
After that consult, we will have to decide on the next step. Dr. F. did offer that we could email Dr. Berkowitz directly, if we wish. I think we will wish, but perhaps it will be easier once armed with more info from Dr. C.
Thursday, October 14, 2010
Beautiful Girl
An ultrasound today at 23 weeks. Imaging technology just keeps getting more and more amazing. Our beautiful little girl, 1 pound-2 ounces big, can show up in 3D. I could look at that all day. I love you, little one.
Developmental notes:
Both the technician and the doctor raved about how "beautifully she scans." Apparently these are better than average pictures, on the whole. All the development items checked were normal (brain, heart and major veins/arteries, etc.). Growth was on track from 4 weeks ago, holding around the 35th percentile for size. Heart rate still holding consistently around 150-155 beats per minute. Very active during the scan. In addition to the squirming and kicking, we watched her mouth open and close for a while.
For the record on the photo above, the head is perfectly well-closed; the apparent lack of a skull in back is an artifact of the 3D resolution.
For the record on the photo above, the head is perfectly well-closed; the apparent lack of a skull in back is an artifact of the 3D resolution.
God is Good
God is Good.
All the time!
All the time.
God is Good!
One of my favorite litanies. Maybe because it is so straightforward. It is this simple, straight message that I need to hear, and cling to, in the valleys. I have had the incredible blessing of a life in which I have experienced this, in a touchable way, over and over again. So, even in the valleys, when I don't see how God could work it out, I know that God could. Now, my life is often a study in developing the faith to let go and rest in this message. (Not coincidentally, I am sure, a great blogger commented on this topic during the very week that I needed to hear it: Don't pare down the promise!)
On the other hand, I don't think we can be completely passive in troubling circumstances. I don't mean, exactly, "God helps those who help themselves." But sometimes, I find that it requires my stewing about the problem for a while first to allow me to fully recognize God's provision at the right time. Today, I am adding another of these situations to my personal testimony.
My previous post (Learning to live with uncertainty) laid out (in gruesome detail) my worries over getting the best possible medical care for this new baby. Perhaps the most relevant part of that post is that I was beyond prayer - too afraid of God's answers. But I did send the link to just a few dear friends and asked them to read it and intercede on our behalf in prayer. Then, I set about "stewing" (or looking for my own answers, really).
One long evening, in which I stayed up way too late with Google, turning up about 15 relevant or semi-relevant articles dealing with NAIT in the medical journals . I was looking for data to support the treatment plan that was being suggested to me, and I didn't find it, to my satisfaction. So, that left me feeling no less settled.
I was also looking to make a list of authors, and found that just two doctors in New York showed up as a co-author on about 90% of those papers. Thus, I concluded that if I was going to have an outside consult, I wanted to see one of those two (Dr. Bussel or Dr. Berkowitz). Now, neither of these were the one being suggested by my discouraging consult here in town, two weeks ago, with Dr. W. So, I had already abandoned that plan, and had spent the past week stewing about my upcoming check-up with my primary OB, Dr. R.. She is pretty unexcitable, yet always willing to order a test or procedure. I was trying to develop the ultimate 5-minute pitch, so that in my 15-minute prenatal check-up, I could convince her to get me a referral to one of the NYC docs. I didn't really expect to be successful, so I was also trying to figure out how contact one of these docs on my own, prepared to pay out-of-pocket if they would just agree to talk to me.
The day before this visit with Dr. R, I had a follow-up ultrasound with the maternal-fetal medicine clinic (home of Dr. Z and Dr. W who had already given me the unsatisfying suggestions). As far as I knew it was only an ultrasound, but afterwards, I got escorted to a room and asked to wait for a doctor. This clinic has four doctors, and each visit, you randomly get whomever is free when you are. Today, on our third visit, we met our third doctor, Dr. F. Praise be to God!
I was a bit nervous as we began, since she said she had been reviewing my chart with the notes from the other 2 docs, including his offer of a consult with Houston. (I had already determined this would be pointless since he said he had already talked to this doc in Houston, his buddy, so I pretty much had already had that second opinion, for better or worse.) But, Dr. F then asked me "Do you have any questions for me today?" It seemed a bit strange. Nothing could have changed since my visit 2 weeks earlier, when I got Dr. W's advice, which she had just read, right? But, when she asked for questions, she sounded like she meant it.
So I dared to ask her about my treatment plan, and said I had some concerns about it. Then, she pretty much volunteered exactly what I wanted. She said, "Yes, I am fairly new in this practice, but I have treated this condition a few times in my past practice, and I always recommend a consult with Dr. Berkowitz in NYC - he writes the papers and knows more than anyone else. If anyone has a better treatment idea, he will." Well, of course, Dr. Berkowitz was one of my two names, so I practically cried with joy when she said this. I could hear God's joyful laughter ringing in my head. I sometimes think he surprises us with these kinds of answers to prayer just because he so delights in it. "Nice job figuring out how to solve your own problems, dear. Now that you are stuck, you will better recognize my provision of the perfect solution, won't you?" I worry that this quote might sound wrong in writing. I don't imagine God speaking with the slightest tone of condescension or scolding. Just pure delight in being able to give us good gifts.
So now, helpful, wonderful Dr. F is making the arrangements. I am merely waiting hopefully for the details of that consult. I am trying to keep my expectations reasonable - it may still be that no one will be able to determine the risks because the testing is just not available, but at least I will now be able to feel like I have done everything that I can do to make a good decision.
Praise to God.
All the time, God is good.
All the time!
All the time.
God is Good!
One of my favorite litanies. Maybe because it is so straightforward. It is this simple, straight message that I need to hear, and cling to, in the valleys. I have had the incredible blessing of a life in which I have experienced this, in a touchable way, over and over again. So, even in the valleys, when I don't see how God could work it out, I know that God could. Now, my life is often a study in developing the faith to let go and rest in this message. (Not coincidentally, I am sure, a great blogger commented on this topic during the very week that I needed to hear it: Don't pare down the promise!)
On the other hand, I don't think we can be completely passive in troubling circumstances. I don't mean, exactly, "God helps those who help themselves." But sometimes, I find that it requires my stewing about the problem for a while first to allow me to fully recognize God's provision at the right time. Today, I am adding another of these situations to my personal testimony.
My previous post (Learning to live with uncertainty) laid out (in gruesome detail) my worries over getting the best possible medical care for this new baby. Perhaps the most relevant part of that post is that I was beyond prayer - too afraid of God's answers. But I did send the link to just a few dear friends and asked them to read it and intercede on our behalf in prayer. Then, I set about "stewing" (or looking for my own answers, really).
One long evening, in which I stayed up way too late with Google, turning up about 15 relevant or semi-relevant articles dealing with NAIT in the medical journals . I was looking for data to support the treatment plan that was being suggested to me, and I didn't find it, to my satisfaction. So, that left me feeling no less settled.
I was also looking to make a list of authors, and found that just two doctors in New York showed up as a co-author on about 90% of those papers. Thus, I concluded that if I was going to have an outside consult, I wanted to see one of those two (Dr. Bussel or Dr. Berkowitz). Now, neither of these were the one being suggested by my discouraging consult here in town, two weeks ago, with Dr. W. So, I had already abandoned that plan, and had spent the past week stewing about my upcoming check-up with my primary OB, Dr. R.. She is pretty unexcitable, yet always willing to order a test or procedure. I was trying to develop the ultimate 5-minute pitch, so that in my 15-minute prenatal check-up, I could convince her to get me a referral to one of the NYC docs. I didn't really expect to be successful, so I was also trying to figure out how contact one of these docs on my own, prepared to pay out-of-pocket if they would just agree to talk to me.
The day before this visit with Dr. R, I had a follow-up ultrasound with the maternal-fetal medicine clinic (home of Dr. Z and Dr. W who had already given me the unsatisfying suggestions). As far as I knew it was only an ultrasound, but afterwards, I got escorted to a room and asked to wait for a doctor. This clinic has four doctors, and each visit, you randomly get whomever is free when you are. Today, on our third visit, we met our third doctor, Dr. F. Praise be to God!
I was a bit nervous as we began, since she said she had been reviewing my chart with the notes from the other 2 docs, including his offer of a consult with Houston. (I had already determined this would be pointless since he said he had already talked to this doc in Houston, his buddy, so I pretty much had already had that second opinion, for better or worse.) But, Dr. F then asked me "Do you have any questions for me today?" It seemed a bit strange. Nothing could have changed since my visit 2 weeks earlier, when I got Dr. W's advice, which she had just read, right? But, when she asked for questions, she sounded like she meant it.
So I dared to ask her about my treatment plan, and said I had some concerns about it. Then, she pretty much volunteered exactly what I wanted. She said, "Yes, I am fairly new in this practice, but I have treated this condition a few times in my past practice, and I always recommend a consult with Dr. Berkowitz in NYC - he writes the papers and knows more than anyone else. If anyone has a better treatment idea, he will." Well, of course, Dr. Berkowitz was one of my two names, so I practically cried with joy when she said this. I could hear God's joyful laughter ringing in my head. I sometimes think he surprises us with these kinds of answers to prayer just because he so delights in it. "Nice job figuring out how to solve your own problems, dear. Now that you are stuck, you will better recognize my provision of the perfect solution, won't you?" I worry that this quote might sound wrong in writing. I don't imagine God speaking with the slightest tone of condescension or scolding. Just pure delight in being able to give us good gifts.
So now, helpful, wonderful Dr. F is making the arrangements. I am merely waiting hopefully for the details of that consult. I am trying to keep my expectations reasonable - it may still be that no one will be able to determine the risks because the testing is just not available, but at least I will now be able to feel like I have done everything that I can do to make a good decision.
Praise to God.
All the time, God is good.
Saturday, October 2, 2010
Learning to live with uncertainty
I once heard a speaker give a lecture on genetic testing and bioethics. He was trying to respond to a question from his audience - someone was bewildered that a person might choose to not get genetic testing to confirm or deny if they had a fatal inherited disease that was known to run in their family. "Well, I suppose that I might be hit by a semi driving home this afternoon. But if that is what is going to happen, I am not sure that I would want someone to tell me that right now. I don't know that I want to know the hour and means of my death that precisely."
That story has stuck with me through many years, but lately become personal in some new ways. What if someone were to tell me, "You have a highly increased likelihood of being hit by a semi today, but it isn't certain. And there is probably nothing that anyone can do to prevent it, if it will happen. But maybe, if you make the right choices, and you can't know which those are, you could prevent it. But then, it might not happen anyway, so if you make the right choices you would never even know." In the past few weeks, I feel like that is the story I have been told about this baby and this pregnancy.
So, I had a very unsettling visit to the maternal-fetal medicine clinic this week. To tell the whole story, I have to back up a bit, and it may get jumbled. But I need to tell this story somewhere, just to work out my own feelings.
It actually begins three years ago, at John's birth. A week after he was born, he was re-hospitalized for low platelets. He was given an initial diagnosis of an infection, put on IV antibiotics, and we settled in to wait. Very quickly, however, it became clear that he was getting worse (lower platelet counts) despite the treatment. He was quickly transferred to the care of the pediatric hematologists, who instead diagnosed him with Neonatal Alloimmune Thrombocytopenia. This basically translates to "a newborn with low platelet counts due to antibodies of the mother's immune system transferred to newborn in utero, against newborn's own platelets." There is no "cure" other than to wait 2-3 months for the antibodies from the mother to clear from the baby's system. Fortunately, as that happens, the platelet counts can gradually recover. Also, the baby can be given steroids and IVIg to suppress the immune response, both of which John had, along with several platelet transfusions. The risk of not bringing the platelet counts up high enough is brain hemorrhage, particularly if there has been substantial bruising of the head from birth traumas. John's plately level did dip low enough to cause the hospital staff to hit the panic button at one point, but he was fortunately just fine.
The only odd or frustrating point in John's treatment was the lack of a definitive diagnosis. Jeremy and I both had our blood genotyped, and my blood checked for antibodies against his blood. One potential mismatch was identified, but no antibodies, indicating that this was not the source of John's problem. Puzzling. Still, the hematologist looked us straight in the eye and said, "Clinically, John has a classic case of NAIT. He responds classically to the NAIT intervention we have applied. You apparently fall into the 15% of cases where we can't confirm the diagnosis with lab testing, but there is no doubt in my mind that John has NAIT." So, I considered that matter settled.
Thus, as we embarked on this pregnancy, this was all in my mind. I knew, from our consults with the hematologists at the time of John's birth, that this could recur and might cause complications for a future pregnancy. But I was left with the impression that it was a very treatable situation, as long as we knew about it, which now we did.
So, we dutifully informed our OB right away of this issue. She dutifully referred us, right away, for a consult at the maternal-fetal medicine clinic ("high-risk OBs). Still, she did so amidst assurances that this shouldn't be a big deal, since John was just fine.
Then, 2 weeks ago, we went to the clinic. We started with Sherise, the genetic counselor (their standard procedure). I didn't think she had known much about NAIT, but she had clearly been doing homework for us. She appeared to have been getting current in the research literature. She was able to confirm my expectation for treatment - likely IVIg for me for the second half of pregnancy, to suppress my immune system in hopes of preventing transfer of antibodies to the baby that might be attacking her own platelets. Birth options (vaginal vs. C-section) were up to the doctor; either was possible. Finally, she reported that her research indicated that we had a 90% likelihood of a recurrence of NAIT, and it would most likely be more severe than in a previous case (with John). This was discouraging, and surprising since the genetics, at face value, seemed to indicate a 50% chance of recurrence (either the mismatch or not the mismatch). She agreed that she couldn't explain it from the genetic testing of Jeremy and I, but that was what she concluded from her research. Finally, she went on to entertain herself and us with some genetic mapping of our family trees. Nothing I hadn't learned how to do in high school genetics class, but it filled in her file and at least spoke to her thoroughness.
Next, we had the ultrasound, which was thorough and of course thrilling if not particularly informative beyond, "The baby is growing well so far."
Finally, we saw Dr. Z at the clinic. Unfortunately, she did not inspire confidence. As far as I could tell, Jeremy and I knew as much about NAIT as she did, based on our few hours of internet research (WebMD and the like). First, she pooh-poohed the whole thing. "Well, you only have a 50% chance of recurrence, first of all." I protested, pointing out that the genetic counselor in her own office had just told us 90%. She stared at us as if we were idiots. She started to explain the "one gene from mom, one gene from dad" to us. "Yes, yes, we understand that. We just had this conversation with Sherise. She told us 90%, anyway." Okay, that was the end of that unfruitful discussion with Dr. Z.
Next, Dr. Z said, "Well the standard treatment would be IVIg for you, as early as 20 weeks gestation. But that is very expensive, and requires weekly infusions. You had such a mild case last time, I am not going to order that for you."
I blink, trying to absorb her recommendation and sort out the real reasons. "Oh, okay. But, why do you say mild? Yes, John didn't have a hemorrhage (Thanks be to God!). But, he had a remarkably gentle birth, so no bruising at all. He was 2.5 weeks early, and by 1 week before his due date, his platelet levels were low enough to send the peds hematology floor staff scrambling at 5 AM. And Sherise just told us it would likely be worse with this pregnancy."
Now, Dr. Z blinks. I am not clear as to whether she is stunned that we are questioning her advice, or whether she is scrambling to come up with answers that sound authoritative on a topic for which she is less than an expert. She punts. "Why don't I consult with Dr. C (the pediatric hematologist who treated John)? andl get back to you." Fair enough. I certainly would want to encourage consults.
Jeremy asks about her recommendations for the birth itself, since the prospect of a C-section has been weighing on me. If we are to have one, I want to just know it and start adjusting my expectations for that. She is adamant that she only delivers NAIT babies by C-section. "Does it matter that I have very easy deliveries? They are quick and unmedicated and uncomplicated. My regular OB, Dr. R, thought that might end up being less trauma than a C-Section, if all could go well vaginally." No, Dr. Z really doesn't see this as a possibility. She mentions the horrors of suction and forceps and the damage it can do to the baby's head and you wouldn't want to bruise the baby. I stare at her, wondering if she is actually hearing anything I say. Suction? Forceps? I have been through 3 births without any of that every being mentioned. Why would we assume to start now? We decide to leave this conversation for later in the process. We leave the appointment with promises of a follow-up phone call from Dr Z, or else more info at our next appointment in 2 weeks.
Dr Z is faithful in calling, that same afternoon. She called me to report on her conversation with Dr C, the pediatric hematologist. I listen to her report and end up feeling like I am now caught in the three-way triangle between Sherise, Dr. Z, and Dr. C, who all have their own stories and own recommendations but none of whom has all the information. Dr Z had Dr C look up John's case history. Dr. C reportedly said:
Wow. So much there, I don't even know where to begin. My questions started pouring out. Dr. Z seemed to cut me off, and I wasn't sure if that was because she didn't really know any more than what she had told me, since Dr. C was the hematologist, or if she just didn't think my questions were worth answering. I finally gave up, thanked her, and started writing down a list for my next pre-natal visit at the clinic. I was hoping to draw a different doctor from the pool this time and maybe get one with a fresh perspective.
So, I wanted to know:
Dr. W, unfortunately, quickly took the wind out of my sails. "Here's the good news! Your lab tests from 2 weeks came back (it takes 8-9 days to run the test) - it was fine. You have no antibodies. So, all clear for now. We will retest in 6 more weeks." That was the end of his story. Fortunately, he was very receptive to questions, and we kept him nearly an hour with ours.
Me: "Why not the IVIg?"
Dr. W: Well, look, we don't really even have a diagnosis of NAIT here. IVIg is very expensive, has some potential side effects of discomfort for you, and we can't measure if it is even working because we have no evidence of the problem.
Me: "But Dr. C (actually, his partner, Dr. M), the hematologist, looked me in the eyes 3 years ago and said, 'Clinicially, there is no doubt in my mind that John has NAIT.'"
Dr. W: Well, we can't prove it by a lab test. It is a hypothesis. It may be a good hypothesis, but it can't be a diagnosis without proof, so I can't treat you for that.
Me: "So basically, are you saying, 'You are dismissed. Go off and have a normal pregnancy - we aren't going to do anything at all'?"
Dr. W: Well, no! We will check your blood for antibodies every 8 weeks (for the remaining 19 weeks of the pregnancy).
Me: "But that didn't show positive, even when John was having clear clinical symptoms."
Dr. W: Well, there isn't anything else we can do. I mean, we can watch the ultrasounds for signs of a hemorrhage, but then all we see is the possible evidence of a past brain bleed, when the damage is already done. But I can't give you the IVIg for something we can't confirm that you even have.
Me, thinking to myself: "Alright, is this good medicine, or is this financial medicine? I know the IVIg is expensive, but this is MY baby at risk."
Me, out loud: "So, that is it, then. Go on, and hope for the best."
Dr. W: Well, I can give you a referral to talk directly to the hematologist again. I can give you a referral to another maternal-fetal medicine doctor for a second opinion. But I have already consulted with my friend, Dr. Ms (in Texas), and he concurs. And he is the best I know of for this condition.
Look, I know this might sound cavalier, but go ahead, have those consults if you want to. Then, you have done your due diligence. You have gathered as much information as you can. And the reality is, sometimes, we just can't know. So then, you just have to absolve yourself of the guilt if things don't work out well. That's a hard statement, but it doesn't stop for a parent after the child is born. In fact, as you get older, you find you have to do it more and more, for your kids and even for your kids' kids.
Me, to myself: WHAT?
I gathered myself to leave before I broke down in tears. There was obviously no help on this front for my baby. Now I just needed to get out of there as soon as possible and figure out what was left to do.
I rode home in silence, assessing my situation:
Of course, God had instructed us not to worry. But he also has never promised us health and wealth, either. He only promises to be with us, through it all. Job has been very much on my mind over the last week. Job's faith never wavered. He always trusted that God was with him. But did that take away the soul-searing sting of losing every loved one he had? Of course I recognize that just as I can't add one day to my life, or my baby's life, through worry. Still, how can I not worry as I face the possibility of a future so much bleaker than we have been preparing for?
I am trying to stay positive. I think back to that first dreadful week, when we thought we would lose this baby to miscarriage. I remember the day I had a change of heart, when I was able to entrust this baby to God, and at the same time, resolve not to give up on her. I still am resolved to never give up; to fight for this baby with everything I have. But what, really, do I have in this case?
And so, I find myself thinking positively, but also simultaneously steeling myself for the alternative outcomes. I am preparing a maternity leave plan with my department chair, but constantly in the back of my mind is, "What happens if the baby dies and I have a stillbirth at 8 months? Do I lose my medical leave, but with no classes scheduled for me to teach, also find myself with no job and no income for the spring semester?" I can't really think of a rational way to ask a question like this, but I also can't quite get it out of my mind.
I was at Toys-R-Us today helping Maggie pick out a birthday gift for a friend, and passed the racks of summer clearance clothes for babies. This was the first time I've been in a store since I found out we are having a girl, and I was drawn to the racks of frilly sundresses, wanting something to save and hold as I wait for this baby. Then, I turned and walked away, afraid to buy something that would linger if this baby doesn't live to see next summer.
Through it all, I find myself curiously unable to pray. I guess I don't know what to pray for, because I don't know God's will and I am not now able to pray for His will to be done if that means losing this baby. Usually, in this situation, I can at least turn to others to ask for prayer on my behalf. But this story is so long (as you know if you are still reading). I can't exactly phone it in to the church prayer line, or explain it over the coffee after the service. I do take comfort in the prayers of the kids. We haven't told them anything of this situation, but somehow they have been worried all along. Maggie's bedtime prayers regularly include "please help the baby to grow and not die," which breaks my heart at the same time that it heals it.
So, I guess that is my prayer for tonight, too. God, please protect this little life that is growing so quickly inside me. Please give Jeremy and I wisdom to seek and find and know the right course of action for medical care. And yes, please be with us all, even as you were with Job.
That story has stuck with me through many years, but lately become personal in some new ways. What if someone were to tell me, "You have a highly increased likelihood of being hit by a semi today, but it isn't certain. And there is probably nothing that anyone can do to prevent it, if it will happen. But maybe, if you make the right choices, and you can't know which those are, you could prevent it. But then, it might not happen anyway, so if you make the right choices you would never even know." In the past few weeks, I feel like that is the story I have been told about this baby and this pregnancy.
So, I had a very unsettling visit to the maternal-fetal medicine clinic this week. To tell the whole story, I have to back up a bit, and it may get jumbled. But I need to tell this story somewhere, just to work out my own feelings.
It actually begins three years ago, at John's birth. A week after he was born, he was re-hospitalized for low platelets. He was given an initial diagnosis of an infection, put on IV antibiotics, and we settled in to wait. Very quickly, however, it became clear that he was getting worse (lower platelet counts) despite the treatment. He was quickly transferred to the care of the pediatric hematologists, who instead diagnosed him with Neonatal Alloimmune Thrombocytopenia. This basically translates to "a newborn with low platelet counts due to antibodies of the mother's immune system transferred to newborn in utero, against newborn's own platelets." There is no "cure" other than to wait 2-3 months for the antibodies from the mother to clear from the baby's system. Fortunately, as that happens, the platelet counts can gradually recover. Also, the baby can be given steroids and IVIg to suppress the immune response, both of which John had, along with several platelet transfusions. The risk of not bringing the platelet counts up high enough is brain hemorrhage, particularly if there has been substantial bruising of the head from birth traumas. John's plately level did dip low enough to cause the hospital staff to hit the panic button at one point, but he was fortunately just fine.
The only odd or frustrating point in John's treatment was the lack of a definitive diagnosis. Jeremy and I both had our blood genotyped, and my blood checked for antibodies against his blood. One potential mismatch was identified, but no antibodies, indicating that this was not the source of John's problem. Puzzling. Still, the hematologist looked us straight in the eye and said, "Clinically, John has a classic case of NAIT. He responds classically to the NAIT intervention we have applied. You apparently fall into the 15% of cases where we can't confirm the diagnosis with lab testing, but there is no doubt in my mind that John has NAIT." So, I considered that matter settled.
Thus, as we embarked on this pregnancy, this was all in my mind. I knew, from our consults with the hematologists at the time of John's birth, that this could recur and might cause complications for a future pregnancy. But I was left with the impression that it was a very treatable situation, as long as we knew about it, which now we did.
So, we dutifully informed our OB right away of this issue. She dutifully referred us, right away, for a consult at the maternal-fetal medicine clinic ("high-risk OBs). Still, she did so amidst assurances that this shouldn't be a big deal, since John was just fine.
Then, 2 weeks ago, we went to the clinic. We started with Sherise, the genetic counselor (their standard procedure). I didn't think she had known much about NAIT, but she had clearly been doing homework for us. She appeared to have been getting current in the research literature. She was able to confirm my expectation for treatment - likely IVIg for me for the second half of pregnancy, to suppress my immune system in hopes of preventing transfer of antibodies to the baby that might be attacking her own platelets. Birth options (vaginal vs. C-section) were up to the doctor; either was possible. Finally, she reported that her research indicated that we had a 90% likelihood of a recurrence of NAIT, and it would most likely be more severe than in a previous case (with John). This was discouraging, and surprising since the genetics, at face value, seemed to indicate a 50% chance of recurrence (either the mismatch or not the mismatch). She agreed that she couldn't explain it from the genetic testing of Jeremy and I, but that was what she concluded from her research. Finally, she went on to entertain herself and us with some genetic mapping of our family trees. Nothing I hadn't learned how to do in high school genetics class, but it filled in her file and at least spoke to her thoroughness.
Next, we had the ultrasound, which was thorough and of course thrilling if not particularly informative beyond, "The baby is growing well so far."
Finally, we saw Dr. Z at the clinic. Unfortunately, she did not inspire confidence. As far as I could tell, Jeremy and I knew as much about NAIT as she did, based on our few hours of internet research (WebMD and the like). First, she pooh-poohed the whole thing. "Well, you only have a 50% chance of recurrence, first of all." I protested, pointing out that the genetic counselor in her own office had just told us 90%. She stared at us as if we were idiots. She started to explain the "one gene from mom, one gene from dad" to us. "Yes, yes, we understand that. We just had this conversation with Sherise. She told us 90%, anyway." Okay, that was the end of that unfruitful discussion with Dr. Z.
Next, Dr. Z said, "Well the standard treatment would be IVIg for you, as early as 20 weeks gestation. But that is very expensive, and requires weekly infusions. You had such a mild case last time, I am not going to order that for you."
I blink, trying to absorb her recommendation and sort out the real reasons. "Oh, okay. But, why do you say mild? Yes, John didn't have a hemorrhage (Thanks be to God!). But, he had a remarkably gentle birth, so no bruising at all. He was 2.5 weeks early, and by 1 week before his due date, his platelet levels were low enough to send the peds hematology floor staff scrambling at 5 AM. And Sherise just told us it would likely be worse with this pregnancy."
Now, Dr. Z blinks. I am not clear as to whether she is stunned that we are questioning her advice, or whether she is scrambling to come up with answers that sound authoritative on a topic for which she is less than an expert. She punts. "Why don't I consult with Dr. C (the pediatric hematologist who treated John)? andl get back to you." Fair enough. I certainly would want to encourage consults.
Jeremy asks about her recommendations for the birth itself, since the prospect of a C-section has been weighing on me. If we are to have one, I want to just know it and start adjusting my expectations for that. She is adamant that she only delivers NAIT babies by C-section. "Does it matter that I have very easy deliveries? They are quick and unmedicated and uncomplicated. My regular OB, Dr. R, thought that might end up being less trauma than a C-Section, if all could go well vaginally." No, Dr. Z really doesn't see this as a possibility. She mentions the horrors of suction and forceps and the damage it can do to the baby's head and you wouldn't want to bruise the baby. I stare at her, wondering if she is actually hearing anything I say. Suction? Forceps? I have been through 3 births without any of that every being mentioned. Why would we assume to start now? We decide to leave this conversation for later in the process. We leave the appointment with promises of a follow-up phone call from Dr Z, or else more info at our next appointment in 2 weeks.
Dr Z is faithful in calling, that same afternoon. She called me to report on her conversation with Dr C, the pediatric hematologist. I listen to her report and end up feeling like I am now caught in the three-way triangle between Sherise, Dr. Z, and Dr. C, who all have their own stories and own recommendations but none of whom has all the information. Dr Z had Dr C look up John's case history. Dr. C reportedly said:
- John had a very mild case of NAIT
- Genetic testing of Jeremy and I revealed a "nonspecific immune response"
- IVIg treatment for me is not necessary at this point.
- My blood should be periodically checked throughout the pregnancy for antibodies against Jeremy's blood. If any are found, then we might re-evaluate and start IVIg treatment for me.
- Dr. C thought that a vaginal delivery would be very reasonable, but that the OB should take a scalp sample of the baby during delivery and check the platelet count. If it were very low, then maybe we should switch to a C-section.
Wow. So much there, I don't even know where to begin. My questions started pouring out. Dr. Z seemed to cut me off, and I wasn't sure if that was because she didn't really know any more than what she had told me, since Dr. C was the hematologist, or if she just didn't think my questions were worth answering. I finally gave up, thanked her, and started writing down a list for my next pre-natal visit at the clinic. I was hoping to draw a different doctor from the pool this time and maybe get one with a fresh perspective.
So, I wanted to know:
- How do you determine that John's case was mild? Yes, he had no hemorrhage, but he also had no bruising. Yes, his platelet count at birth was low but not dangerous, but one week after birth (still a week before his due date), it was dangerously low. If this pregnancy gets worse, that could be very serious.
- Why does he not recommend IVIg for me? Is it because the case is "mild?" Then I am back to question 1. Is it because IVIg is just not effective for a "nonspecific immune response?" Then what is that, exactly, and what does it mean?
- How does checking for antibodies in my blood make a sufficient trigger for starting IVIg treatment? I had no detectable antibodies in my blood at 1 week postpartum with John - the same time that he apparently had enough antibodies to reach dangerously low platelet counts. What makes Dr. C think the antibodies will show up in my blood this time if the baby is in danger?
- Thank goodness the OB rejects the scalp sample already, because I would. There is so much wrong with that! (That would require breaking my water to get it, which removes the natural cushion for a gentle vaginal birth! Also, John was born in 2 pushes. By the time the sample is collected, this baby will be born. Don't ask me to cross my legs for 2 hours while the lab downstairs runs a platelet count.)
Dr. W, unfortunately, quickly took the wind out of my sails. "Here's the good news! Your lab tests from 2 weeks came back (it takes 8-9 days to run the test) - it was fine. You have no antibodies. So, all clear for now. We will retest in 6 more weeks." That was the end of his story. Fortunately, he was very receptive to questions, and we kept him nearly an hour with ours.
Me: "Why not the IVIg?"
Dr. W: Well, look, we don't really even have a diagnosis of NAIT here. IVIg is very expensive, has some potential side effects of discomfort for you, and we can't measure if it is even working because we have no evidence of the problem.
Me: "But Dr. C (actually, his partner, Dr. M), the hematologist, looked me in the eyes 3 years ago and said, 'Clinicially, there is no doubt in my mind that John has NAIT.'"
Dr. W: Well, we can't prove it by a lab test. It is a hypothesis. It may be a good hypothesis, but it can't be a diagnosis without proof, so I can't treat you for that.
Me: "So basically, are you saying, 'You are dismissed. Go off and have a normal pregnancy - we aren't going to do anything at all'?"
Dr. W: Well, no! We will check your blood for antibodies every 8 weeks (for the remaining 19 weeks of the pregnancy).
Me: "But that didn't show positive, even when John was having clear clinical symptoms."
Dr. W: Well, there isn't anything else we can do. I mean, we can watch the ultrasounds for signs of a hemorrhage, but then all we see is the possible evidence of a past brain bleed, when the damage is already done. But I can't give you the IVIg for something we can't confirm that you even have.
Me, thinking to myself: "Alright, is this good medicine, or is this financial medicine? I know the IVIg is expensive, but this is MY baby at risk."
Me, out loud: "So, that is it, then. Go on, and hope for the best."
Dr. W: Well, I can give you a referral to talk directly to the hematologist again. I can give you a referral to another maternal-fetal medicine doctor for a second opinion. But I have already consulted with my friend, Dr. Ms (in Texas), and he concurs. And he is the best I know of for this condition.
Look, I know this might sound cavalier, but go ahead, have those consults if you want to. Then, you have done your due diligence. You have gathered as much information as you can. And the reality is, sometimes, we just can't know. So then, you just have to absolve yourself of the guilt if things don't work out well. That's a hard statement, but it doesn't stop for a parent after the child is born. In fact, as you get older, you find you have to do it more and more, for your kids and even for your kids' kids.
Me, to myself: WHAT?
I gathered myself to leave before I broke down in tears. There was obviously no help on this front for my baby. Now I just needed to get out of there as soon as possible and figure out what was left to do.
I rode home in silence, assessing my situation:
- I am pregnant, 21 weeks, with a beautiful, kicking, wiggling, perfectly formed, wonderful baby girl.
- She may, or may not, have a condition that will cause her platelets to dip to dangerously low levels at any point between now and her birth.
- There is no way I can know whether she has this condition, nor if so, how severe it is.
- If she has it, it could easily be fatal, either in utero or shortly after her birth.
- The only possible intervention (IVIg for me) costs $2,000 per week, from whenever we start it until her birth (currently due 19 weeks from now).
- The doctors with the power to provide that IVIg won't do so for me, and I ultimately have no way of knowing if that is because
- They don't really think it is necessary
- They don't really think it would be effective
- They just think it is too expensive given the chance that either 1 or 2 could be true.
- I would submit to anything, including paying for the medicine myself, if I could get some assurance from someone (anyone?) that it might improve my baby's chances of survival.
- No one will give me any such concrete information.
Of course, God had instructed us not to worry. But he also has never promised us health and wealth, either. He only promises to be with us, through it all. Job has been very much on my mind over the last week. Job's faith never wavered. He always trusted that God was with him. But did that take away the soul-searing sting of losing every loved one he had? Of course I recognize that just as I can't add one day to my life, or my baby's life, through worry. Still, how can I not worry as I face the possibility of a future so much bleaker than we have been preparing for?
I am trying to stay positive. I think back to that first dreadful week, when we thought we would lose this baby to miscarriage. I remember the day I had a change of heart, when I was able to entrust this baby to God, and at the same time, resolve not to give up on her. I still am resolved to never give up; to fight for this baby with everything I have. But what, really, do I have in this case?
And so, I find myself thinking positively, but also simultaneously steeling myself for the alternative outcomes. I am preparing a maternity leave plan with my department chair, but constantly in the back of my mind is, "What happens if the baby dies and I have a stillbirth at 8 months? Do I lose my medical leave, but with no classes scheduled for me to teach, also find myself with no job and no income for the spring semester?" I can't really think of a rational way to ask a question like this, but I also can't quite get it out of my mind.
I was at Toys-R-Us today helping Maggie pick out a birthday gift for a friend, and passed the racks of summer clearance clothes for babies. This was the first time I've been in a store since I found out we are having a girl, and I was drawn to the racks of frilly sundresses, wanting something to save and hold as I wait for this baby. Then, I turned and walked away, afraid to buy something that would linger if this baby doesn't live to see next summer.
Through it all, I find myself curiously unable to pray. I guess I don't know what to pray for, because I don't know God's will and I am not now able to pray for His will to be done if that means losing this baby. Usually, in this situation, I can at least turn to others to ask for prayer on my behalf. But this story is so long (as you know if you are still reading). I can't exactly phone it in to the church prayer line, or explain it over the coffee after the service. I do take comfort in the prayers of the kids. We haven't told them anything of this situation, but somehow they have been worried all along. Maggie's bedtime prayers regularly include "please help the baby to grow and not die," which breaks my heart at the same time that it heals it.
So, I guess that is my prayer for tonight, too. God, please protect this little life that is growing so quickly inside me. Please give Jeremy and I wisdom to seek and find and know the right course of action for medical care. And yes, please be with us all, even as you were with Job.
19 weeks - all's well
We had our first ultrasound at 19 weeks. I have been remiss in reporting on it. First and foremost, the baby looks fabulous! We have been referred to maternal-fetal medicine ("high-risk OB") because of John's condition (see NAIT post). The good side of that is that they have a very nice ultrasound set-up. The best part for me was the screen on the ceiling above the examining table! For the first time, I had a good view without craning my neck. The machine also seemed much more advanced than just a few years ago - better clarity. Even I could recognize a few things this time around. (Or, maybe I am just getting more experienced with these blobs on the screen.)
So, there is our baby, all 8 ounces! As Jeremy said during the ultrasound, "I could watch these things all day." We saw that baby squirming all around for the entire hour-long scan, though I couldn't feel a thing yet. In the photos above, you see the profile of the face, then a profile that also includes the spine and body.
The technician helpfully counted 10 fingers and 10 toes for us. Funny, I hadn't thought to worry about that until she did it. Fortunately, it came out right, since given my genetic history, I guess I can't take that for granted. The baby's size measured appropriately to confirm our due date of early February. And of course, we were also anxious to find out the answer to Maggie's most urgent question. Maggie's prayers have been answered in her favor,,, it's a girl!
Or, at least we think so. The technician was not actually all that convincing in her declaration. In fact, what she said was, "Are you thinking what I am thinking?" Well, how would I know? I have gotten good enough to pick out the baby apart from the placenta or my own body parts (mostly) but I sure don't know what we are looking at. She never even voiced her guess; I had to squint and read what she typed on the screen. Still, we are assuming we can start calling the baby "she," and we told the kids, and we quit making plans to squeeze 3 boys into one bedroom. But, at the same time, I won't feel completely settled on the matter until at least one more confirmatory ultrasound. Which we are certain to get. That seems to be one thing you get plenty of with your referral to maternal-fetal medicine.
The technician helpfully counted 10 fingers and 10 toes for us. Funny, I hadn't thought to worry about that until she did it. Fortunately, it came out right, since given my genetic history, I guess I can't take that for granted. The baby's size measured appropriately to confirm our due date of early February. And of course, we were also anxious to find out the answer to Maggie's most urgent question. Maggie's prayers have been answered in her favor,,, it's a girl!
Progress notes...
I have so much to catch up on for recording this pregnancy. I hardly know where to start. But, it is 9:25 PM and I am unlikely to be good for much longer, so I guess I had better just jump in anywhere.
First, some updates on how I have been feeling. I still can't stand to wear pants/skirts most days. My belly is just too crampy and bloated feeling all the time. Once or twice a week, I run out of dresses (or just can't go out with unshaven legs again) and put on slacks. On those days, I usually end up back at home in a nightgown by dinnertime, just to relieve the pressure on my abdomen. So, I continue to peruse online stores for maternity clothes, bemused that dresses are so hard to come by. Apparently, I am in a distinct minority of pregnant women who can't stand a waistline.
Otherwise, I am feeling pretty good. Definitely less fatigued than in the early months, although I can still be found asleep on the couch by 8 PM more nights than not. Still, I am getting up at 6:30 every morning, and making it through the day, so that isn't terrible.
I quit taking the prenatal vitamins. I had filled my prescription at Meijer because they offer this scrip free. Turns out to have been a very costly free. I felt so sick and bloated and uncomfortable all the time while I took those. I happened to forget a couple of days in a row, and felt so much better that I haven't gone back. I tried a few different brands since then (free samples from my OB). They were better but still not great. For now, I will stick with my doc's okay to just take the extra folic acid and calcium and call it good enough.
My sciatic nerve is starting to act up now, at 21 weeks. Not as bad as I recall it from past pregnancies, yet. Just enough to jog my memory of how unpleasant that was at some point in my past. That may be the worst part of a pregnancy that is not my first. I have a distinct amnesia for the discomforts while I am not pregnant (must be a built-in, evolutionary mechanism for survival of the species). But now that I am committed, those dark flashes of memory come as near panic attacks from time-to-time as I begin to recall what I had buried, and realize that I have no way out but to march through it. I try to take courage by looking backward at the first trimester, though. I am close enough to that (this time around) to still remember there were days when I doubted I could survive the duration of the pregnancy. At the same time, I can already, just a few months later, look back with enough amnesia to say, "It probably wasn't actually that bad. Look how quickly it passed."
I have started to feel the baby move, finally. I was getting occasional twitches or flutters, but now I get an unmistakable "thump" at least daily. It is very reassuring. I know I will soon tire of the tyke keeping me awake at night or the like, but for now, I look forward eagerly to playing "push" with her through my abdomen. Or for the first time Jeremy or the kids can feel a kick. So much to look forward to.
First, some updates on how I have been feeling. I still can't stand to wear pants/skirts most days. My belly is just too crampy and bloated feeling all the time. Once or twice a week, I run out of dresses (or just can't go out with unshaven legs again) and put on slacks. On those days, I usually end up back at home in a nightgown by dinnertime, just to relieve the pressure on my abdomen. So, I continue to peruse online stores for maternity clothes, bemused that dresses are so hard to come by. Apparently, I am in a distinct minority of pregnant women who can't stand a waistline.
Otherwise, I am feeling pretty good. Definitely less fatigued than in the early months, although I can still be found asleep on the couch by 8 PM more nights than not. Still, I am getting up at 6:30 every morning, and making it through the day, so that isn't terrible.
I quit taking the prenatal vitamins. I had filled my prescription at Meijer because they offer this scrip free. Turns out to have been a very costly free. I felt so sick and bloated and uncomfortable all the time while I took those. I happened to forget a couple of days in a row, and felt so much better that I haven't gone back. I tried a few different brands since then (free samples from my OB). They were better but still not great. For now, I will stick with my doc's okay to just take the extra folic acid and calcium and call it good enough.
My sciatic nerve is starting to act up now, at 21 weeks. Not as bad as I recall it from past pregnancies, yet. Just enough to jog my memory of how unpleasant that was at some point in my past. That may be the worst part of a pregnancy that is not my first. I have a distinct amnesia for the discomforts while I am not pregnant (must be a built-in, evolutionary mechanism for survival of the species). But now that I am committed, those dark flashes of memory come as near panic attacks from time-to-time as I begin to recall what I had buried, and realize that I have no way out but to march through it. I try to take courage by looking backward at the first trimester, though. I am close enough to that (this time around) to still remember there were days when I doubted I could survive the duration of the pregnancy. At the same time, I can already, just a few months later, look back with enough amnesia to say, "It probably wasn't actually that bad. Look how quickly it passed."
I have started to feel the baby move, finally. I was getting occasional twitches or flutters, but now I get an unmistakable "thump" at least daily. It is very reassuring. I know I will soon tire of the tyke keeping me awake at night or the like, but for now, I look forward eagerly to playing "push" with her through my abdomen. Or for the first time Jeremy or the kids can feel a kick. So much to look forward to.
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