Doctor Update

Had my (last?) consult with maternal-fetal medicine on Friday (32 weeks). There are at least 5 doctors there, 3 of whom I have met on 3 different visits. Today, we got a repeat, of Dr. F, who is thankfully the one that I loved.

We started with another ultrasound. Got technician #3 out of 3 ultrasounds at this office. She was clearly the most in a hurry of any of them (she was running almost 45 minutes behind schedule by our 10 AM appt) which may be why the photos are not as clear. But, perhaps the poorer quality is just because the baby is getting more crowded in there. Still, nice to see more shots of the beautiful little girl.

Jeremy likes the "face-palm" view. There is a certain expression on her face of "Oh, good grief, are we doing this again? Can't a girl get any peace?"

Jeremy is getting pretty good with the ultrasounds - he can pick out much of the anatomy now. As he said at the previous ultrasound, "I could look at these all day. This is so amazing."

Other than the photos, we got a few updates. Weight: 3.5 pounds (27th percentile, down from 35th % at previous ultrasound). Position is currently breech. Organs and internals all looking good. Funniest thing was the technician pointing out hair! There was a spray of short, spiky hair off the back of her head, splayed out like hair tends to do when underwater. Of course, can't tell color or thickness from an ultrasound, but there is no way that Maggie had enough hair in utero for it to splay out like that. Guess I had better adjust my mental picture for a newborn girl with some hair!

Next, we went in for the consult with Dr. F. The main point of this visit was to answer any remaining questions we had and discuss delivery options. Unfortunately, we have already established that there are no answers to our remaining questions. As for delivery options, I had been hoping that today's ultrasound and discussion with the doctor would make this decision clearer. Instead, it seemed to make it all more murky.

The official "recommendation" from both Dr. B in NYC and Dr. C (pediatric hematologist here in GR) is to either (1) schedule a planned C-section, to be on the safe side in case the baby has low platelets, or (2) do a cordocentesis at 36-37 weeks, to check the baby's platelet levels, after which we would decide whether to schedule a C-section or proceed with a normal vaginal birth.

I had been leaning towards option 2. This had the advantage of giving me some concrete information, earlier in the pregnancy. If anything was wrong with this baby's platelet, we would know sooner, and could take care of it. If nothing is wrong, then I can (maybe?) quit worrying for the last month of pregnancy, let things take their natural course, and avoid a C-section (a big bonus). But, obviously, to pursue this option (2) I needed to better understand the risks associated with the cordocentesis procedure.

Dr. F began by explaining the process. I am prepped as for a C-section and taken to an operating room. A needle is inserted into my abdomen, aiming for the vein in the umbilical cord. A small sample of blood is withdrawn. This procedure is most often done for younger babies (20-30 weeks gestation) who are getting not just a blood sample but a platelet transfusion. That would be a more lengthy process, obviously. In my case, if all goes well, maybe 15 minutes or less. Most serious risk is that the cord will rupture, leading to the baby bleeding to death. It is for that reason that it is recommended that I wait until good viability (36+ weeks). Then, if a rupture would happen, they see it immediately on the ultrasound and do an emergency C-section.

This procedure involves mild sedation for me, and sometimes requires sedation for the baby. If the cord is attached on the backside of the uterus, for example, then the doctor needs to catch a piece of it, floating freely. To keep the baby from moving or kicking it away, the baby is fairly heavily sedated (another possible risk factor, particularly if the baby is then emergency delivered while sedated - breathing assistance is required).

The only statistic that Dr. F could give us for the risks of this procedure is a very global average: 1% fatality over all the procedures done. But, she stressed that we are very different from the typical case where this is done, so our risk factor is much, much lower. She couldn't put a number on it, and of course reminded us that any procedure has risks. But she said she wouldn't hesitate to have this done for herself under these circumstances.

She explained what was in our favor, as far as risk and outcome:

1) We are a textbook perfect case for a good outcome on the cordocentesis. The cord in our case is attached to the placenta top and front, making the whole process much easier. The cord sample can come right through the placenta, without ever even entering the amniotic fluid. This means little to no sedation for the baby, and no fishing around for a floating cord.

2) We would be at 36+ weeks, much further than most babies who have this procedure, so if an emergency C-section were needed, it would likely have a good outcome.

3) We don't need the transfusion, so the procedure itself will be much shorter and less complicated.

On the other hand, the procedure is expensive. Dr. F didn't really know the details, but was certain it is more costly than a C-section itself. She assured us that insurance should cover it since we have letters from two doctors recommending the procedure. But of course, someone still pays for this.

Dr. F then confirmed my concerns, that a C-section has risks as well. "Yes," she said. "We treat them as routine, but it is a major surgery and that can always come with complications."

Jeremy, ever the optimist, then introduced option (3) to the list. Since all seems to be going well, why not skip the cordocentesis and the c-section, and just do a normal delivery, hoping for the best? Dr. F agreed that this would not be an unreasonable approach, in her opinion. However, for legal self-protection, a doctor (such as the two who have written recommendations so far) won't give a written recommendation for that path, simply because no one knows the risks involved with that (because the baby's platelet count is unknown and the progress of a vaginal birth in terms of trauma can never be fully predicted). 

SO, here we are. Dr. F cheerfully agreed that

• option (1) - planned C-section - would be a reasonable choice, but does involve risks and certainly a difficult recovery
• option (2) - cordocentesis followed by selection of vaginal or C-section delivery - would be a very reasonable choice with very low (but non-zero, unquantifiable) risk but considerable expense (to the insurance, at least)
• option (3) - scrap it all and go with a normal vaginal birth like the first three kids - would be a medically justifiable decision as well, given the available information (and lack thereof). However, the risks of this approach are completely unknowable because the baby's platelet count is probably okay but might be dangerously low, and the birth trauma would probably be negligible but might be significant.

Argh. I found myself quietly cursing my good luck at having such perfect cord placement. If this would be a challenging cordocentesis, it would be a no-brainer for me. I would bite the bullet and schedule a C-section (skipping the cordo). But it is not. So, can I morally/medically/financially justify the cordo simply to give me peace of mind for the last month of pregnancy, and to possibly avoid a C-section?

I also have to figure out how to deal with Jeremy's infernal optimism. I am in no way ready to embrace his option (3). As appealing as it seems, it feels like the ostrich approach to me (sticking my head in the sand and hoping the problems will disappear). But as long as that is the solution that he is most comfortable with, I don't feel like we can really come to a mutual decision about the other two options. So again, I am feeling desperate for someone to advise me in this, and offer wisdom. Seems like a recurring theme in this pregnancy.

Praying now for discernment, and peace.  We have about 4 weeks to figure it out.

Braxton-Hicks going like crazy

Last week, I saw Dr. R for my regular check-up. Nothing too interesting there beyond the disappointing bloodwork (see earlier post). I did ask her about my disturbing inability to exercise, which often includes even moderately paced walking.

Walking in to work, which used to take 10 minutes, has taken closer to 20 over the past few months, as I have increasingly more contractions while walking. I have had to stop and breathe through them on occasion. Even walking to class from my office can bring this on. Dr. R seemed more amused than alarmed, as is to be expected from her. So, do what feels okay and live with it, apparently.

Yesterday (Saturday) was a real test, though. I was tired anyway. I made a few trips up and down the stairs with laundry. Then I gave up on the loads and asked James and Jeremy to carry the laundry.  Still, just the steps led to contractions so painful that I had to sit down. Momentarily, I felt panic. If I could be this miserable now, how would I survive labor? But, I must allow reason and not fear to rule. I have done this 3 times before. It will be fine.

I remember lots of these Braxton-Hicks contractions with John, too. Just not so early, and not so painful. Perhaps being 3 years older makes a difference.

32 weeks

I reached this milestone 3 days ago. Overall, feeling pretty good. Still have days when I feel enormously huge and uncomfortable; other days when I feel fairly small and peppy. This weekend has been a loss. Exams finished up this week. We still have a big stack of grading ahead of us, but the scheduled stuff is done until Jan. 5. My body seemed to just say "Ahhh..." and let down in response.

Saturday, I slept in until 8:30 (woken up by John needing to be wiped in the bathroom!). Found that all the kids had been up and playing quietly for over an hour. After breakfast, managed to fall back asleep for a leisurely nap. Then, still feeling sluggish, had a second nap in the afternoon.

Unfortunately, today (Sunday) wasn't much better. Up at 7:30 for church today, but napped over 2 hours this afternoon. I will have to get back on a schedule eventually (like, tomorrow) so that I can get work and Christmas stuff done. But for now, it is nice to have a breather.

Test results

Sigh. Nothing seems to be the same this time around in pregnancy. For the previous two, I had to have my tegretol levels monitored, but it was nothing much. Both times, I increased medication by 15% in month 6, responded well, then came right back down after delivery. So, I expected pretty much the same thing this time.

Sure enough, in month 6 my levels dropped enough to earn an extra pill a day. But the recheck in month 7 showed no response - my levels haven't come up at all. That is new. So now, I go up by another pill. Which would all be just a minor nuisance, except for the complicating factors.

I have also had a low platelet count throughout the entire pregnancy. Not dangerous, just borderline. Every month, my OB orders another CBC. Then after each one, I get a call from the nurse. "Your platelet count is low, so Dr. R just wants to recheck it next month." Okay. Makes sense to me. I wonder if she finds all the info, with which she apparently plans to do nothing, just randomly interesting? At least I am well used to blood tests, so I don't really mind all the extra pokes - but it is an annoying expense.

Well, the last few times, "low" platelets have gotten lower. Again, not dangerous, but definitely dropping, and now out of the range of "low normal" and into "low." And the bummer is, based on all my investigations for this pregnancy about low platelets, I now know that low platelet count can be a side effect of tegretol. So I feel a bit "damned if do, damned if don't."

I can't very well drop the tegretol and risk a seizure. Bad for me; very bad for the baby. But if it really is the culprit in my low platelet count, then it might very well be exacerbating a low platelet count for the baby that could already exist due to immune factors. Maybe this would push her over the edge into the "dangerous" levels. And now I find that I need to start taking a higher dose of tegretol than I have ever had before.

I reached 32 weeks today - 8 weeks to go. With these competing bad options before me, it starts to feel like a race to the finish line. At what point is this baby better off on the outside, early or not?

Ironically, in all other respects, this pregnancy feels like it is going really well now. I feel pretty good, overall. I have energy. I haven't gained too much weight. I don't have major aches or pains (almost no heartburn this time; no sciatica or lower back pain). As long as I don't have to smell Dawn dishsoap, the nausea seems under control. (I don't know why...it just is. We gave the Dawn away and I am much happier.) The baby moves lots every day, reassuring me of her continued vitality.

Well, tomorrow is our (probably?) last visit to the specialist OB (maternal fetal medicine). It is another ultrasound, and a consult to discuss cordocentesis, c-sections, and other delivery-related options. Maybe after tomorrow we will at least have the plan in place, and the timetable. That should help me to stop fretting over these other things that I really can't do anything about anyway.

Hang in there baby! See you at the finish line.

Mixed feedback

At my last prenatal checkup (3 weeks ago), Dr. R. asked me if I felt small or large.

"HUGE!" I replied. Of course, she caught me on a "bloaty" feeling day, but in general I have felt big.

"Well, what do your friends say about how you look?"

Fortunately, they are mostly too polite (or wise) to say anything.

"Well," she continued, "You are measuring a bit small, but if you feel big, then you are probably just about right." Hmm. That sounds like classic Dr. R. speak for "I will be watching this but I refuse to alarm you about it."

I am not very alarmed, really. The ultrasound at 22 weeks measured a baby in the 35th percentile, so it would not be too surprising if I measure small. Maybe she is just a small kid. After all, none of my babies have started out very big. Maggie was the biggest at 7lbs 7oz, and James was only 6 lbs 6 oz.  (John was in between at 6lb15 oz.)

On the other hand, these things do fester in a hormonally soft mind. I have noticed that I feel this baby's kicks much more strongly than any of the other three. They are right near the surface and feel like they will burst through. So now, I find myself wondering if she doesn't have enough amniotic fluid. That would lead to a smaller uterine measurement for me, and possibly less cushioning for her kicks and pushes. It is something I can't quite dismiss now that I have thought of it. But, not much I can do about it now, either. I have a check up on Friday (5 days) and an ultrasound next week. I can ask about it then.

I did get my first feedback on size from an observer, though. I think maybe I was better off without it. I went to church this morning in my one maternity "business suit" because I was serving as Liturgist. Then, I changed into slacks and a tartan plaid turtleneck for the evening's Children's Christmas program. A kindly(?) woman chatting with me after the evening service mentioned, "Wow, you looked so slim this morning, but that plaid shirt really brings out your belly! When are you due?) Um, yeah, thanks.

Making progress...

I am 30 weeks now. 75% done. Kind of hard to believe.

A couple of weeks ago, when I hit 28 weeks, I found myself thinking as I walked to class, "This really isn't so bad. I could maybe do this again." Now, that kind of insane self-talk is a clear sign of passing a milestone. As I have entered the third trimester, already the first is fading from my brain. You know, the one where I couldn't get up off the couch for two months. Where I vomited regularly. THAT trimester. But, it is nice to (re)discover that all misery truly is transient, no matter how insurmountable it feels on that particular day, or week, or month.

Of course, James caught me off guard recently, too. We were sitting at the dinner table and he made some comment along the lines of, "When we have our NEXT baby..." I confess, as good as I now feel about things, I was not excited about him planning for baby 5 before I have even finished with number 4. I really don't see that happening, realistically. :)

Now, I am settling in for the long wait. This is the part where it always seems to me that the birth should be "any day now." I realize this is way too soon, but mentally, I am ready to be done. Gotta get to the finish line, still.

Peace at last

The consult with Dr. C last week seemed finally like the answer to our prayers. It didn't answer all of our questions, but at least we finally feel like we talked directly to someone who knew what he was talking about.

We don't have a different answer than before, but I now feel peace about it. I am not in a state of desperate panic about not seeking preventative treatment for this pregnancy. I don't feel quite so much like a ticking time bomb. I do still have some anxiety about whether to pursue a cordocentesis in the 8th month, and whether to plan a C-section, but that isn't a decision that needs to be made now, so there really is nothing more to do, and I can put it from my mind a bit. That is a good feeling.

A recap of our conversation with Dr. C (quotations are not exact but based on my notes):

How is the antibody testing done?
Jennifer's serum is mixed with a random platelet sample. The lab looks for platelet aggregation. It won't show up if the antibodies are present at a low level or a low intensity, which is what I am calling the non-specific immune response, as I suspect in your case. If the blood has antibodies against very common platelet antigens then you are much more likely to have trouble in this or any subsequent pregnancy.

What was John's actual history?
His platelets counts were

• 40-60,000 at birth on 6/26.
• 30,000 when readmitted to the hospital on 7/3
• 13,000 by 7/5
• He had IVIg on 7/4 and 7/5 (plus steroids)
• 84,000 on 7/6 when he was discharged.

At what platelet level do you consider the switch to be from "low" to "dangerous?"
Right around 50,000

What else could cause low platelet count in an infant besides NAIT (or NATP, the alternate acronym for the same condition that Dr. C preferred to use)?

• infection (unlikely for John - no other clinical signs, which is why they stopped an IV antibiotic treatment on 7/4)
• stress at birth ... low oxygen levels during birth lead to decreased blood pH and acidosis (typically would be seen in first 3 days after birth, so again, unlikely in John's case)

Some doctors have indicated that John's records are inconsistent with NAIT, because his levels continued to drop after his birth for 10 days, instead of improving upon birth. Do you have thoughts about whether he really had NAIT?
NAIT involves a highly specific or high intensity antibody. I believe that John's case was  an immune-mediated thrombocytopenia, but not NAIT (the alloimmune variety).  I believe John's case was a non-specific immune-mediated response.

With NAIT, the high-intensity, specific antibodies cross the placenta during pregnancy (which leads to the high prenatal risk to the baby). The non-specific antibodies generally don't cause severe problems prenatally, either because they are present at too low of a level or too low of an intensity. It is believed that newborns may get this non-specific antibody from a direct mixing of mom's and baby's blood, and thus a higher exposure to mom's blood, in the birthing process. Thus, the baby's condition can worsen after birth (the most significant antibody exposure) rather than improve quickly (because no longer getting large doses across the placenta, as with NAIT).

In addition, John's condition may have been exacerbated (though unlikely to have been caused) by the tegretol Jennifer was taking. Low platelet count is a potential side-effect of that medication.

What are your recommendations for this current pregnancy?
First, a non-specific immune response, as I suspect John's case was, means that it is not likely to get worse with each pregnancy (as it would be with NAIT).

Second, probably not useful to keep testing for platelet antibodies in Jennifer's blood during this pregnancy. You didn't have them with John's case (meaning either that they are something that we don't know how to test for, or they weren't there, or they were non-specific enough that they didn't show up in our current screening protocols. Thus, they are unlikely to show up again in this pregnancy, and we have confirmed that already with one screening at 20 weeks. Platelet antibodies last about 6 months to a year, so any that you had from John would be gone by now.

An early delivery will probably not be necessary, unless there were a known event that would cause significant mixing of mom's and baby's blood (like placenta previa).

I concur with recommendation of Dr. Berkowitz, that you either plan a C-section to be safe, or else a cordocentesis to check the baby's platelet levels at 36-37 weeks. If the count is below 50,000, then I would recommend proceeding to an early C-section, probably after allowing about 48 hours on the medication to mature the baby's lungs. If the count is above 100,000, you could plan a normal vaginal delivery.

[Of course, as Jennifer's regular OB, Dr. R, pointed out with her typical good humor at the next visit, "Jennifer, of course you will get a count in between 50,000 and 100,000 and then we'll have to figure out what to do with that."]

Still waiting...

We have yet another medical consult tomorrow morning. That makes one every Thursday for the past month and they all involve at least half the day (there goes my "non-teaching day" for research time). Argh. But, I am still glad to have this appointment. I have been waiting anxiously for it.

Tomorrow, we meet with Dr. C, the pediatric hematologist who treated John at his birth 3 years ago. This is the partner of the doctor who told me that "without a doubt, John has NAIT, even though we can't confirm that with the lab tests." Since all the maternal-fetal medicine docs now are claiming that John didn't have NAIT (or that it is at best a good theory), I would like to discuss the case again with Dr. C.

And, it will be nice to talk directly to Dr. C this time. One thing that has been very frustrating through all of this is that each person we talk to only seems to have a fraction of the knowledge about our case, and only a fraction of the knowledge about NAIT in general. So, each is giving us an action plan based on incomplete data input. This frustrates the researcher in me. Get your data collected, sorted, and straight first. Then draw your conclusions.

My dad suggested that we go to a place like Mayo Clinic, because he has heard that they practice a "team-approach," getting all the various practictioners together in one room with the patient to discuss the case. That sounds very much like what I want (need?) right now. Unfortunately, Mayo doesn't have anyone on staff who specializes in NAIT. And, in any case, my doctors here are not sending me to another clinic for an on-site, complete consult. They just want to do the quick phone conversation route. Without me involved, apparently.

So, I feel that it is up to us to make our own "conference room." We will gather all the info we can from Dr. C. tomorrow. Then, we need to evaluate that and see if we can make a case for enough new or conflicting information to initiate our own call/email to Dr. Berkowitz in NYC. And then, I guess I am at the end of the line. At that point, I will exhausted all avenues and I will have to learn to accept the recommendations that I can get from the doctors that I have. As always, back where I started. This is all up to God. If I can just get myself out of the way.

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.

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.

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.

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.

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:

1. John had a very mild case of NAIT
2. Genetic testing of Jeremy and I revealed a "nonspecific immune response"
3. IVIg treatment for me is not necessary at this point.
4. 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.
5. 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.

Dr. Z concluded with, "But, as I told Dr. C, we don't do scalp samples anymore. They just weren't that reliable. I don't think we even have the equipment anymore."

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:

1. 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.
2. 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?
3. 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?
4. 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.)

I did my best to suppress my eagerness for answers, and decided to wait patiently for the 2-week follow up consult at maternal-fetal medicine. As a new doctor walked in, I felt hopeful. Maybe here is the new perspective that we need, I thought, as I introduced myself to Dr. W.

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:

1. I am pregnant, 21 weeks, with a beautiful, kicking, wiggling, perfectly formed, wonderful baby girl.
2. 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.
3. There is no way I can know whether she has this condition, nor if so, how severe it is.
4. If she has it, it could easily be fatal, either in utero or shortly after her birth.
5. 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).
6. 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
1. They don't really think it is necessary
2. They don't really think it would be effective
3. They just think it is too expensive given the chance that either 1 or 2 could be true.
7. 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.
8. No one will give me any such concrete information.

And so, a dark cloud has settled. I used to cry at Hallmark moments, because pregnancy hormones would just do that to me. Now, I cry instead in all the quiet moments on my own, because I feel so scared and helpless. I know stress and worry are bad for the baby. But I don't have a luxury of unlimited time. If there are actions that need taking, I have to take them before this clock runs out over the next 4.5 months. I don't know if and when that alarm might go off, so I don't actually know if I have less time than that. I don't know my next step. And I am far too hormonal to make fair, rational decisions about justified health care (treatments, expenses, etc.). I feel very alone. I knew it might be hard to be without Mom during this pregnancy, but now I feel it to a degree that I never expected. Somehow, I just feel like she would know what to do. She would find someone with an answer. She would figure out a better plan. I know that is probably irrational, but it only underscores how alone I feel about all these things that I have to figure out.

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.

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.

A whole month gone by already?

Here I was planning to keep a careful record of this pregnancy. Instead, it has been over a month since my last post! No coincidence that I haven't posted a word since I started back to work. My goal now is to get through to December. Just to survive. I keep telling myself it will all be worth it, this crazy fall, so that I can take the entire spring semester off in peace. I just have to get there.

The good news is that I am feeling pretty good, physically. I have very little nausea now. I am still very fatigued, of course, but not dead on my feet 24 hours a day anymore.

The bad news is the stress of keeping up with work, kids, household, church committees, doctor's appointments. So many times a day, I find myself having to remember just to slow down and breathe, and let it all go.

Finally convincingly showing?

First time today (8/25/10, 15 wks 4 days) - I got an unsolicited/uninformed "Are you expecting?" It was a very friendly mother from the kids' school whom I know a little bit, running into us at Meijer. Actually her words were, "And do you have a little bundle in there?" Clearly a bold statement. I don't know this woman well enough to know if she is just unusually bold, or foolhardy, or if I am really showing differentially now. It was about 2 weeks ago at church that I caused an acquaintance to inquire behind my back if I was pregnant (always the safer route, in my opinion), but this was the first time to my face.

Still, it was fun (since I am in fact expecting, as opposed to just gaining weight).

Whose timing?

My OB seems to have settled on a due date of February 10, 2011. I have to pause now and then to marvel at the wonder of God's perfect timing. Christians (myself included) often pay lip service to this, but it is usually in the tone of a platitude, trying to make ourself feel better as we impotently attempt to console a hurting friend. "God's timing is not our own but it is always perfect." Yeah, who ever really wants to hear that when they are still waiting? But it is for just this reason that I think we must note, and treasure up in our hearts, examples of this perfect timing. For we are weak, and need concrete crutches to strengthen our faith.

Would I have ever picked this due date if it were up to me? I can't imagine yes. I have 3 summer babies. Again, not exactly my timing choices, but it did work out well.

With Maggie, I actually was back at work within 2 weeks, but it was okay. In that case, I was ready. And it never occurred to me to try anything different. There was no maternity leave policy in place at work. I was still untenured and nervous about asking for a leave. Plus, with my job-share arrangement, I was pretty sure that the only leave option would be for Jeremy to cover for me. I thought spending more time alone at home post-partum was scarier than a few hours a week at the office teaching a familiar course, with lots of work brought home and done near the kids.

With James and John, I had a summer for maternity leave and was ready for work in the fall. These June births were easy, and an obvious choice. So a mid-winter birth would not have occurred to me if the planning were left to me.

 But now I understand all the pieces in retrospect. Back in early spring, as the teaching schedules for the upcoming year were being arranged, I was surprised to see that for the first time ever, I was being heavy-loaded in the fall semester (8.5 credits vs. a full-time load of 9-10) but with almost no duties in the spring (2 credits). I considered asking for a more even distribution, but then decided I liked the assigned courses and it would be workable.

Now I find myself with a due date less than 2 weeks into the spring semester. Obviously not a convenient one to teach. Since John was born, the college has newly adopted a maternity leave policy so I went to look it up. Turns out that based on my position, due date, etc., I get exactly 2 credits of medical leave. So, I can take off the entire spring semester, clean, with no loss of income. That is not a plan I could ever have worked out in advance. (Okay, maybe if I were still 23 and naive enough to think that I could actually "plan" when a baby comes, I might have thought of it. I long ago learned that is out of my control.) This baby wasn't even a glimmer yet when all these plans had to be fixed.

Of course, nothing is ever quite so easy. I still have a research project that needs attention through the spring, particularly with a hoped for grant-application in mid-March. But I have wonderful, understanding collaborators. If it doesn't work, they will forgive me.  I still have the prospect of an extremely busy fall semester, in which I will have to juggle the additional time constraints of medical appointments and pregnancy fatigue. There is still the prospect of a late-pregnancy complication (bed-rest? early delivery?) that would interfere with my January term teaching duties.

But I find myself unable to worry about any of this, really. It isn't just a case of pregnancy hormones keeping me relaxed, I think. I finally understand that this baby's timing is all in God's care. My worries are irrelevant - they won't change a thing. For once, I am going to let go, sit back, and enjoy watching God work this one out.

What is in a sound?

I heard the baby's heartbeat for the first time this week. There is something indescribably magic about hearing that strong, rapid rhythm filling the small examining room. Sure, I saw the heartbeat on ultrasound weeks ago, and loved that, too.

But now, for weeks, I have been caught in pregnancy limbo. I feel pregnant (sick, tired, etc.) but there is no concrete evidence that all is well. I can't feel the baby move. I am not growing noticably bigger (that all happened up front this time). I know that worry is unproductive and unneccesary, but still...

At 10 weeks, the doctor went looking for the heartbeat. The whole gang - all 5 of us - were there hoping to hear. But Dr. Rinzler couldn't find it for us. She played it cool. "No big deal. I can't reliably pick it up on the microphone until 12 weeks, when some more parts (intestines) move around and get out of the way." Still, she is the queen of "no big deal," I have learned through many years of visits. So, I am not necessarily reassured by her. She worries lots (one of the reasons I think she makes such a good doctor) but she never shares that worry with me.

So, I wasn't exactly concerned, but still, to hear that loud, strong sound was truly a balm to my soul. John and Maggie were along this time, and seemed unimpressed, but they were busy arguing over the one chair in the room, looking at books, and generally causing a bit of trouble.

Dr. Rinzler called out her usual insincere predictions. After listening for just a moment, she announced, "I'll say...148 [beats per minute] so I will say, it's a boy." Then, as usual, she laughed and assured me that she can't really tell that way. "I can't actually hear the penis waving around in there." Well, thanks for that clarification, Doc. I suppose a lifetime as an OB/GYN would lead to a ceratin earthy sense of humor.

Obsessed with food

I am again, in this pregnancy, struck by how completely obsessed I become with food.

First, during the all-the-time nausea food is all I can think about. "What will be the least likely to make me feel worse? How much should I eat to not get too hungry and cause more nausea? When can I eat again?"

Now, I have moved on to the next stage. I am not nearly so delicate. I can eat a greater variety of foods. (I even managed to politely eat mussels for the first time in my life when served them by a kind host.) But, I am left with a constant feeling of being on the edge of being too full or too hungry. I feel that I need a constant samll stream of food input. Too little, and the queasiness returns; too much and I feel bloated, crampy, uncomfortable.

Now, I am beginning to recall the next stages from previous pregnancies. The heartburn should be here soon. I really didn't experience this the first time, but by number 3, I must have pre-loosened the muscles in my digestive tract, because I was using Tums (to only moderate effect) multilple times a week.
The last stage that I recall was strangely frustrating. Nothing tasted right. Perhaps it was a change in smell or taste. Perhaps it was the looming aura of heartburn or bloatedness. Whatever it was, I could never just sit down and enjoy a meal. I didn't really even like my favorite foods. I was so desperate for the birth by the end, but not for the reasons most women cite. I just wanted to enjoy food again!

But, oh, what a recovery! I still recall my first three glorious post-partum meals - breakfasts at the hospital. Yes, I did just use "glorious" in the same sentence with "hospital breakfast." Like a light switch turned, everything tasted right again, instantly. And, I could eat with gusto (I was famished!) with no discomfort to follow. Nausea? Never heard of it.

And so, my food obsession for the next 6 months will undoubtedly continue, but become more and more forward-focused as I look forward to the certain cure.

Turned a corner!

I reached 15 weeks on Thursday. I think I am really over the nausea, now! I still have moments of queasiness, but the all-the-time-miserably-sick seems to be really gone. I haven't even vomited in well over a week. All is good.

My little lemon?

My Babycenter update tells me that at 14 weeks (reached 5 days ago) my baby should be about 3.5 inches long, "the size of a large lemon." That suddenly seems substantial. But not quite substantial enough to explain the cantaloupe sized bump on my front that has been there for 8 weeks. LOL.

Threatening baby

Had a new experience while traveling to Seattle this week for work. On the way home, security at Seattle's airport was fierce. I got all my items through. I got through the scanner. Then, I was waved aside into a plexiglass booth. The walls kept me confined but certainly provided no privacy as I was informed by a gloved woman that she would need to "pat down my belly" and then my legs, which were "obscured" by my dress. Seriously? At least she looked as embarassed about it as I did. What if I in fact had NOT been 14 weeks pregnant? How would I feel about the implication that my belly was  big enough to be harboring hazardous substances? And it did make me wonder, after seeing this website a few days later (men's sympathy baby bumps Man Bumps) - how often do they pat down a man with a paunch?

God of the night watch

An opportunity to practice my faith.

1 Thessalonians 5:16-18
Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus.


This verse came to me in the middle of the night. Pregnancy hormones apparently give me insomnia (though Jeremy would claim astonishment at this news, since I sleep all the time when he is observing - I only lie awake from about 3-6 AM, then can drowse happily all day long). Thus, I get a lot of my deep thoughts (and meaningful prayer time) in the middle of the night now.

This verse convicted me last week. I have definitely been busy feeling sorry for myself. It is going on 6 weeks now of nearly constant nausea, punctuated only by brief interludes of violent vomiting. Now, I am not a person who typically stops for illness. I never missed school or work for colds, fevers, bronchitis. I have even worked through pneumonia several times. 

But vomiting was the one thing that could stop me dead in my tracks. I used to dread the idea of contracting stomach flu because I knew it would "ground me" for the duration. I prefer to pass through nausea in a completely inanimate state. Fortunately, I seem to have a fairly impervious gut and rarely do contract contagious vomiting. This past spring, our family passed vomiting and diarrhea with a seemingly indestructible bug - James had it once; Jeremy, John and Maggie each had it twice; it dragged out over a month. And yet, I escaped this illness completely.

So, I find myself singularly unprepared to deal with nausea that seems unending. It doesn't take me long to turtle into my shell and just hang out feeling sorry for myself. Perhaps most disturbingly, I have found it difficult to even consider others. I can't remember to ask others how they are doing. I lose all sympathy for the aches and pains of the kids. I have been fully aware of my self-obsession, though seemingly helpless to change it.

So, this verse was a welcome breath of fresh air as it popped into my head early one morning. I tried it out. I rejoiced for my nausea, and gave thanks for the circumstances of my discomfort. After all, I was miserable for a purpose - a joyful purpose. And I was certainly thankful for that purpose. We are commanded to give thanks in all circumstances - certainly these are not the hardest circumstances faced by many believers, including myself?

I sometimes wonder if I am one of the children who most frustrates God. No matter how many times I learn the lesson, I always need it again. Scripture is true. Even as I prayed the prayer, giving thanks for my circumstances, I felt a lightening of my load. No, my nausea didn't actually subside at all. But my sense of despair certainly did. This verse has become my lifeline since then. I will make it through this, and knowing that lifts the cloud and gets me through each moment.

We serve a living God, a God of great mysteries and of quiet companionship. Nothing is too big for God, and yet nothing is too small for God, either.  Praise to God!
Philippians 4:11-13
I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

For the record

I sincerely expect this to be my last pregnancy. I have been a bit amazed and bemused at how few details I can recall of the other pregnancies. I recall emotions, overall impressions, but certainly no dates or real facts. Maybe that is how pregnancy horror stories grow so easily - no one remembers anything except how they felt, which gets translated into much worse stories than reality. Thus, I intend to use this blog to keep an accurate record of just a few facts for this, my last journey through pregnancy.

Nausea
The weeks here are back-calculated from your due-date, as estimated by early ultrasound on June 24.

I started feeling that odd, "all day" sick that I associate with pregnancy on June 15 or 16 (5.5 weeks). It wasn't really miserable yet - I didn't even change my eating habits - but it was the final encouragement I needed to get a home pregnancy test.

I first threw up on June 19 (6 weeks). After that, the all-day, lay around the house and be miserable, nausea started in earnest. Oddly enough, I found that going running was one of the best cures for nausea. I didn't feel at all sick as long as I was moving.

I didn't actually vomit again for a week, on June 27 (7 weeks). But I sure wished I could have a number of time in between.

Had a reasonably good week, including during our trip to VA. As long as I ate regulary and well, I felt okay. But the day we drove home was terrible. I was nauseated the entire 13 hour drive, only to vomit prolifically as I stepped into our driveway at midnight (7/6). Next two days were also a complete loss, vomiting again on July 8 (nearly 9 wks).

The next morning, my "PrimaBella" band arrived by Fed Ex and seemed to maybe be a miracle - I went to work, felt pretty good, was even late getting lunch and not too sick. Unfortunately, seemed to be less and less effective each successive day. Have pretty much lost the weekend lying on the couch feeling tired and nauseated. at 9 wks now - here's hoping this will end by 13 wks instead of much later.

Spent week 10 pretty miserable. Eased into week 11 with the arrival of Jeff and Shannon and my most prolific and projectile vomiting yet (7/23). Thankfully, went on to have a pretty great week for vacation at the lake. Managed to stay up past midnight for my high school reunion (20 years!) without getting sick. Felt functional if marginal most of the week, with only 2 days of "I am not getting out of bed for any reason." Even managed to go running with Shannon one day - run 1 mile, walk 1/2 mile, run 1 mile, walk 1/2 mile, all in just over 30 minutes. Of course, next day was a bad one. Didn't actually vomit the whole week of vacation.

It was Week 12, the Monday (8/2) after we returned, when I let loose again. This was also the day Jeff and Shannon departed. Maybe I just need them in the state to feel well.

Week 13 begins tomorrow. Today (8/4), I actually drank lemonade and ate a small piece of cake at a church meeting. Two weeks ago, that would have had me vomiting before I finished. Tonight, I enjoyed it. Eating dessert again is a trend I can enjoy, even if my weight gain might not appreciate it. Still, at 13 weeks, I have lost a pound or two overall, so I fell that I am doing okay. Although, since my belly is multiple inches larger, I wonder where the weight has been lost from? I have a sinking suspicion it is all just muscle mass. Oh well.
Okay, week 13 didn't go so well. The all-day nausea is mostly gone, but tired and a bit "off" each morning, then a spectacularly large vomit event after lunch on week 13 day 0, day 1, day 2, day 4, day 6. Ugh.

Week 14 - much better. No vomiting, and much less nausea. Looking up? Managed to travel to Seattle and back this week, with odd meal times, sleep schedules, and all, and still felt pretty good, most of the time.


Belly-size
Still feeling reasonably normal sized up until 7 weeks. I have had a bit of a belly that I wanted to get rid of for a few months before the pregnancy, so I suppose that will mask growth a bit, now.

On June 27 (7 weeks), I noticed for the first time that I really wanted to unbutton my shorts. So I guess this is real growing, now. Time to look for clothes with no waists for a while.

On July 12 (9 wks) was in church for the first time in 3 weeks. Felt conspicuous. Haven't told people yet but feeling like it must be getting obvious - just not quite obvious enough for anyone to ask. But I don't know any way to make a "general announcement" so I will just have to rely on word-of-mouth and the passage of time.

August 4 (13 wks tomorrow) - able to tell a "crowd" tonight at church meeting tonight, so hopefully word will spread now. Belly doesn't seem to have grown at all since 7 wks - just a perpetual "bigness" that borders between "Is she pregnant or just getting fatter?" So, I will feel less self-conscious having people know. Apparently the growth pattern for baby #4 is pop out instantly and hang there until the baby grows enough to catch up with the belly size.

Body aches and pains
I recall saying once that my first clue that I was pregnant with John was that my hips ached at night in bed, and I couldn't sleep more than an hour without tossing or turning. This time around, I was thinking that it has been worth every penny for our new mattress (bought since John was born). I had been sleeping very comfortably.

On June 25 (7 weeks) I did for the first time put a pillow between my knees. The mattress helps a lot, but I was starting to feel the strain on the top hip.

One June 28, I added a pillow under my abdomen. I recall that I didn't need that so much for a previous pregnancy (I think it was John?) but that I was desperately miserable without it for another one (Maggie?). Could this be a sign of another girl? Probably not. Since I can't even recall for sure if it was the other way around, it probably doesn't make a good indicator. :)

Girl or Boy?
It is still very early to have an intuition, but I recall thinking that I "knew" (correctly) with each of the other 3 kids, well before the ultrasound confirmed a sex. I wonder how I will do this time?

Jeremy is thinking it is a boy, right now. That was my first inclination, too. I don't know why. But it is not a strong enough feeling that I would stake my guess on it, yet.

I think my nausea patterns follow a progession of intensity with pregnancy, rather than with baby's sex. Although in honest assessment, I am probably not sicker this time than with John. Would I be if this were a girl? Hmm.

My dreams were always the best telltale. I will wait and see if I have a convincing one. I think they always came around the end of the first trimester.

Growing Pains

Well, it is 2:30 AM and I am wide awake. I fell asleep easily enough at 9:00 this evening, but as has happened for several weeks now, I only seem able to sleep a few hours at a time, any time of day.

Most nights, I wake up with an overwhelming need to eat before the nausea hits. Tonight, that wasn't so clear, so I lay in bed a while, hoping to go back to sleep. As the minutes ticked by, I felt that I could almost feel my abdomen stretching as I lay in bed. I decided to get up and try a new position for a while.

I really can't recall when I started "showing" with the other pregnancies. I recall that it got earlier each time. I know that with James, I thought I would never grow. I was so anxious to "be pregnant," after all the waiting, that I was ready to leap into maternity clothes the first day. But it was at least 12-13 weeks, I am pretty sure, and even then, I could have gotten by with just a loose waist for quite a while.

I recall that Maggie was earlier, but that is all that I recall. For John, I don't really recall at all, except that I wanted to go to loose waists to relieve the nausea fairly early on. I do recall an incident with John in mid-to-late January when a stranger felt sure enough to comment on my pregnancy, so it must have been fairly clear. That probably would have been as late as 17 weeks, though.

Having just bought a new summer wardrobe a month ago, I was this time actually counting on staying in normal clothes for at least most of the summer. After all, I will only be at 17 weeks on Labor Day. Wait a minute... 17 weeks on Labor Day? Who am I kidding? In any case, I am now at 7.5 weeks and all my waistbands feel uncomfortable.

I saw the Mom's group at the park yesterday and learned that Stacey is also expecting a baby, about 4 weeks sooner than I am. She is definitely showing. She has had more pregnancies than I, but still. It was a wake-up call that I should at least look for some loose summer dresses if I am not ready for maternity wear. In fact, it set me to wondering what I will pack for our trip in 2 days - if I even have a week's worth of things that I can squeeze into.

As long as I am shopping, I may as well do an inventory of the whole maternity clothing box. I have a strong recollection that after John, I got rid of a lot of things, saying, "This is so worn," or "I really have never liked this hand-me-down at all," so "If I ever need clothes again, I will just treat myself to new things." So, here I am, having to pay the piper for that casual vow. But overall, what a fabulous problem to have.

Spreading the word

It was fun to tell Grandma and Grandpa about you. Dad called them while we were driving up there, right after the ultrasound. He said Grandma cried on the phone when she heard the news. Dad tried to call Grandpa at work and couldn't reach him; he said Grandma must have already called and been on the phone with him!

We told your brothers and sister about you, next. Dad showed them a photo from the ultrasound, in which you look like nothing more than a gray blob in a bunch of other gray blobs. James figured it out first - maybe he remembered a similar photo from when John was born. Maggie was very excited - after all, she has been asking for a new baby for many months now. (In fact, that night, she stayed over again with Grandma and Grandma said Maggie prayed for you at bedtime, for you to grow strong and be healthy.) James was a bit more reticent. Perhaps he remembers more of how much work a new baby is, as well as how much fun. Perhaps, because of his personality and age, he already feels the most neglected, and is having trouble accepting another sibling to share the time of his parents. But, he was thinking about it, processing it slowly and internally, like he usually does. John, of course, really had no idea what we were talking about. :)


When we left that evening, we had planned to leave all 3 kids for one more night at Grandma's house, but James decided to come home with us. That seemed to be just what he needed - a lot of quiet alone time, by himself, and with Mom and Dad to himself. Jeremy decided to stop at Cran-Hill Ranch on the drive home, and we bought ice-cream cones and walked around for an hour, talking and holding hands. We ate dinner at Pizza King and arrived home for bed.

My sleep schedule continued to be confused. I slept from 8 pm to midnight, then woke hungry. I snacked and talked to Jeremy from midnight to 1:30 am, then slept again until 5:30 am. Then, I was up and eating again. That was fine, in the end. I got out to Meijer and back before 8 am, so we would have groceries for the big family birthday party for John that day. I had a nice talk, in the quiet early hours, with James. His questions proved to me that he had been working on the news, even though he hadn't reacted much yet. He was asking about how I knew I was pregnant before the ultrasound, and where the baby would sleep, and other important things. He was clearly warming up to the idea, too. Then, Jeremy woke up so I slept another 2 hours on the couch while Jeremy and James cleaned the house up for the party.

At the party, we got to tell Grandma and Grandpa Root, who seemed happy and surprised, and Aunt Sara and Uncle Rob, who seemed happy and surprised as well. (Aunt Sara is expecting a baby just a few weeks before we expect you!) Your siblings enjoyed comparing notes with their cousins about the new babies arriving for each of them. Finally, Grandpa Tom and Uncle Jim arrived, and we told them, too. Grandpa Tom is nervous, of course, but he will love you to pieces when you get here. And Uncle Jim loves all babies. I think you will like him a lot.

So, the list of people to tell grows shorter. You are only 7 weeks along now, just 8 mm long on last Thursday, and yet you already feel like a part of our family.