Endings and Beginnings

And now you are here, dearest one.

After all the angst, the worry, the hope, the expectation, you arrived quite simply. A quick, straightforward labor and delivery.

Here is how I felt as I saw you...

And how we looked as we learned to be together in a new way...

You announced your imminent arrival by waking me at 3AM with labor pains, and you can see how excited I was to meet you when we arrived at the hospital at 5 AM...

I thought you were an angel from the first - I am sure you were smiling!

Everyone else was excited to meet you as well ...



You are welcome here with us, dear one.

Just waiting...

I will be 39 weeks tomorrow. I have already thought I was starting labor twice - last week Thursday, I woke up at 5 AM and was sure I was in early labor. I paced about the house, timing contractions and fretting. However, by the time the kids were off for school at 7:30, all was calmed down again. No such luck.

Last Saturday, I again got out the stopwatch. I had odd shooting pains down one side of my abdomen for several hours. If I hadn't been watching for labor, I would have said that I had just pulled a muscle in my stomach (which is certainly not out of the question, given how far it sticks out now). But, the pain got worse with each contraction, and the contractions got painful enough that I couldn't talk through them. So, I was really sure that this was it. Then, after after 3 or 4 hours of painful but irregular contractions, everything settled down again.

After both of those episodes, I have gotten a bit disgusted with myself. After all, I have been through this three times. I ought to know if I am in labor or not. I do recall, and Jeremy agrees with me, that when labor actually started with Maggie and John, I didn't have to wonder if it was labor. I knew. Thus, although both of these recent "labor alerts" felt significant, in the end I didn't call the doctor because I figured if I wasn't sure, then it wasn't so. Which proved to be true.

After Saturday's episode, however, I did have quite a burst of energy. I was quite productive around the house for two days, waking early, staying awake late, and not even napping at all! Jeremy began to fear that this was the true early labor warning sign - my "nesting" burst of energy. I got all the rest of the baby stuff located and put away in the dresser. I caught up all the laundry in the household. I finally packed a bag for the hospital. I survived a 2+hour-trip to Meijer with John.

Then, starting on Tuesday morning, the fatigue set in again. Which is not to say that I could sleep any better at night - I continue to wake at 5 or 6 every morning, against my will. However, I was was now tired (and admittedly a bit crabby) all day becasue of it. Since the big snowstorm was predicted to hit Tuesday night, Jeremy figured this was it. But again, not so. The storm came and went, with no baby. I am still tired, but feel no signs of labor whatsoever.

Just waiting can be a bit frustrating, as I keep feeling like I can't commit to anything since I might be going to the hospital at any time. And I have worn myself out making plans and more plans, all unnecessary, for what to do with the kids if today is the day I am headed to the hospital.

So, I am back to the belief that this baby will never come.And, trying to stay focused on getting as much productive activity in as I can.

The home stretch

I reached 38 weeks on Thursday (2 days ago). This definitely feels like the home stretch. I am now at that point where there is a sense of endlessness to the pregnancy.

1/24/11 ...37.5 weeks

Maggie asking me every day "When is the baby going to come?" strangely doesn't help my impatience or restlessness. I try very hard not to take out my frustrations on her each time she asks.

Of course, having been told by the doctor over 3 weeks ago that I would likely have delivered before now doesn't help either. Now I can't help but feel overdue. I try to remember that I really still have 2 weeks to my due date, but that doesn't help much. Jeremy thinks it is humorous to point out my past pattern:
James 1 week early
Maggie 1 day late
John 2 weeks early
THUS...
Next baby (girl) will be 2 days late. Grr. That would be another 2 weeks from today.

I saw my OB yesterday afternoon. Still in what she calls the "ready to go into labor but not there yet" stage. She says the baby hasn't fully dropped and engaged, which is what is needed. She blamed this a bit on being a 4th-time-arounder - muscles more stretched out and it allows the baby room to just float around a bit in there. I found this strange, since I am still 2 weeks from my due-date, but she actually gave me all kinds of unsolicited advice about how to bring on labor.

Actually, she started by saying, "When do you want to have this baby?" That seemed to me a strange question, but I did tell her I was ready anytime. She asked if I wanted to schedule an induction. What? Really? I asked if there was a medical need. "No... the baby is not over-sized. But it is an option." Well, I definitely found labor easier without an induction (Maggie and John) than with (James) so I prefer not to go that route yet. Then she gave me a list of things to try to bring on labor on my own. Okay, odd. I later speculated with Jeremy as to whether any of these are more than just old wives' tales - a way to fool myself into feeling like I have some control over the uncontrollable. But I must confess, I am planning to try them all. :)

On the other hand, I have a competing urge to not push this delivery. I am not actually physically so uncomfortable as I recall being with other pregnancies. (James was fine, but for Maggie I felt huge and bloated - my largest weight gain at 35 pounds, and it was a hot August - and for John I had indigestion all the time - nothing tasted good and I was so anxious to just eat a meal that I could enjoy again.) I am very anxious to meet this baby and hold her. But, after 3 other newborns, I am keenly aware that she is much easier to care for on the inside. I reflect on this when I try to get John in and out of the car for an errand. This is hard to do in my highly pregnany state - I am not strong enough or quick enough to just pick him up and move him if he is feeling uncooperative. Still, it is not going to be easier to manage when I instead am lugging a loaded infant seat everywhere. Or, I think about this when I toss all the kids in the car, late for somewhere, and realize that at least I didn't have to nurse anyone first, or change any diapers.

I also have been in a bit of a panic about work (my professional work). I didn't accomplish as much as I had hoped to during January Interim. I got through the teaching just fine, but it fatigued me, and the afternoons and evenings were only enough time to prepare for the next day, finish grading, and nap. None of the other projects got worked on, contrary to how I had planned.

So now, I have the research project due in 2 months, and the reappointment papers due in 1 month. It seems like I should get as far as fast as I can with those before the baby arrives. It is easy to feel like I will have plenty of time on my maternity leave, with just the baby, but when I stop to think about it, I know that won't be the case. I will have about 8 hours a week when John is in preschool. I should be able to get another 4-8 hours a week when Jeremy can be home. But of that 16 hours, the baby will still need to eat, and I may still be too sleepy to work effectively. In any case, I know intellectually that I must make as much progress as possible now.

So, here I am, waiting. Excited on the one hand to "get this over with," yet also feeling that the longer I wait, the better.

Relief and Joy

Funny how adrenaline works. I spent the morning feeling sluggish and sleepy, perhaps partly from hunger (fasting till 4 PM procedure) and partly from having a cold and partly from nerves. We got to the hospital at 2 PM for the cordocentesis check-in, and I continued to feel fairly calm, even sleepy. Then, during the procedure itself, I felt quite tense as I lay perfectly still, breathing deeply and trying to stay calm and relaxed so that the pain wouldn't break through. Finally, back in the hospital room for recovery and I was feeling shaky and my heart raced and the contractions came non-stop. I guess, once it was all over, my pent up emotions flooded out all at once and I felt like a basket case.

Fortunately, the results were quick, and very good! So good, in fact, that it took me a minute to even digest them. The doctor looked almost disappointed that I didn't react more to her pronouncement, but I was in semi-shock at that point, I think. :)

So, overall, because all went well and the results were good, I can look back with hindsight and say how glad I am that I chose to do this procedure. Since I am no longer paralyzed by fear of all the things that could have gone wrong, I can just reflect on what an interesting process it was.

I had my last food and drink at 7:30 AM since I had to report ready for a C-section, in case that became necessary on an emergency basis. I spent the morning at home with John, who we kept home from preschool because he had a bout of stomach flu last night. He was feeling fine this morning, which is good, but it meant that he was full of pep, and clearly missing the chance to rund around and play at preschool. He was cranky and out of sorts. Still, we made it through until lunchtime when Jeremy returned from work and Jeremy's mom arrived to provide childcare.

At 1:30 PM Jeremy and I left for the hospital. Check-in was a lot of waiting. I got in a hospital gown and answered questions for a parade of people - a nurse, a medical student intern, another nurse. Spent some time on the monitor for the baby. Got an IV started. During this time, my anxiety built a little bit when I overheard conversations between my nurse and another like, "Yes, I need to look up the protocol for it in the book," and "I am waiting for the doctor to find out how she does this." This didn't inspire great confidence. Apparently this procedure is more rarely done here than I was led to believe. My nurse tried to reassure me by explaining that usually there were just 1 or 2 nurses on the floor who always assisted with this procedure, because they liked to do them, but those nurses weren't here today. So, I apparently got the second string. Oh well, she was friendly, at least, and seemed competent in other ways.

Finally, my doctor came in to answer any final questions of mine. Then, the anesthesiologist came in. He was planning to give me "mild sedation, because we can't give more when you are pregnant." I asked if I really needed any at all and he looked surprised. "No, I guess not, if you don't want it." Well, I didn't. I did feel badly for him, though. He ended up looking bored and restless during the procedure. Poor guy had nothing to do. I wonder if he was secretly praying for disaster so he could knock me out for an emergency C-section, just for something interesting to work on.

Finally, my nurse brought the sterile cap for me to wear. Jeremy stepped forward and asked for his outfit to come along. The nurse said extras weren't generally allowed in. He insisted. I would have backed down at this point, but I am very glad that my dear husband is more cantankerous than I am, because the nurse went to ask and came back with sterile gear for him! He got a jumpsuit, shoe covers, a hat, and mask. And, as it turned out, the whole thing took longer than I had been led to believe and having him there was wonderful.

Then, it was time to go, at about 4:10 PM, so reasonably on time for the 4 PM scheduled time. I had the strange experience of walking myself into the operating room. Must be strange for the nurse, too, because she forgot to tell me which way to go at first - I was just standing dumbly in the hallway until she realized that she needed to direct me.

I have never been awake in an O.R. before, so it was actually a fairly fascinating experience. The room itself didn't look like I expected based on the movies and T.V. It was really a dumpy, dingy, cluttered room with white painted cinder block walls - fairly  depressing, overall. I was led past the table full of implements and reminded to stay back from the "sterile" blue table. There were tons of people in the room. It was a bit strange because they looked familiar but not quite, since I could only see eyes above the face masks. I later determined it was my doctor, the resident/intern assistant doctor, my nurse, maybe another nurse (?), an ultrasound tech, a "scrub tech," and the anesthesiologist (the only male besides Jeremy, so the only one I could easily recognize).

I looked at the high, narrow patient table and couldn't figure out how to get up there. Obviously, the team was used to lifting a body off a bed and didn't really know how to do it either. "I think there is a stool around here," offered the anesthesiologist. Fortunately, someone found the switch to lower the bench before I had to climb precariously up a stool and heave my ponderous body onto the truly narrow table.

The anesthesiologist attached "arm boards" which made me much more comfortable - it helped with the feeling that I could roll off at any moment (especially after someone tilted the table a few degrees to one side). Next, he attached his machines that go "ping," - a pulse monitor and EKG leads. He made sure he had quick access to the arm with the IV then draped the other arm with a heavy blanket to help me remember not to move it.

The doctor left to "scrub and suit" and returned quickly with many more layers of sterile blue paper. The entire staff went through an elaborate choreographed dance of suiting each other up and preparing instruments. I could only see it out of the corner of my eye, since I was staring at the ceiling, but Jeremy described it to me and it sounded intriguing as a ritual.

I was next to be sterilized. My entire abdomen was scrubbed, then draped with a large sterile blue paper. It had a hole in the center for where the procedure would occur, and adhesive all around the hole to hold it in place. Then, the edge of the paper was draped in front of my face to block my view. While I agree that is a good idea, I was surprised at how claustrophobic that made me feel. There was my body, laid open for all to mess with, and I was cut off in this other zone. Strange. It certainly gave me a new level of sympathy for moms who are enduring a C-section in this bizarre arrangement.

What made it all bearable was that Jeremy was there, so I was doubly glad he had insisted. He sat on a stool by my head, where he could see over the drape if he wished to, and gave me a quiet running narrative of the process. He described disinfecting the ultrasound probe, and seeing the baby on the screen. He could see the ultrasound picking up her pulse, then finding the placenta and cord. They identified a spot near my belly button for the insertion.

Next, the doctor gave me a numbing shot with a topical anesthetic for the needle insertion point. It felt like a poke and a long burn, like at the dentist's office when getting the numbing shot. And similarly, it felt like it went on way too long. Just as at the dentist's office, the thought ran through my head to say, "That numbing shot is so unpleasant, why don't we just skip it and do the needle without it? How bad can it be?" Fortunately for me, sanity won out. (I actually did try that at the dentist once, and I found out how bad it can be, so I know that shot is not actually worse, even though it might seem like it would be.)

Next, the needle was inserted for the cordocentesis. She warned me that I would feel a cramping as it hit my uterus since she couldn't numb that. I did feel it, but not nearly as much as I had expected to. However, it also wasn't as quick as I had been promised. I had been told "60 seconds" by more than one doctor for this procedure, and Jeremy confirmed for me by clock-watching that it was close to 10 minutes. It was not extremely painful, but it was uncomfortable, so having it stretch out that much longer was an unpleasant surprise. Again, Jeremy to the rescue. He kept up a calm, running commentary in my ear so that I didn't have a chance to panic that the longer time was a sign of trouble. Apparently, they just needed several tries from several angles to catch the cord. Then, it was done.

Next, the amniocentesis. It took a moment to reposition the ultrasound. This time surprised me a bit, as the cramping was much more than before, and more than I had even expected initially. Fortunately, it was very quick, and then it was all over. There was a few minutes of bustle as the staff figured out how to bag and label and sent the samples to lab. The anesthesiologist detached me from the EKG leads. A wheelchair was brought in for me.

There was a bit of an awkward moment as I tried to figure out how to get down off the table. The staff were used to lifting a patient onto a bed. They had no practiced protocol for helping me sit up and climb down. But, I needed help, as I couldn't do a sit-up past my big abdomen, and I couldn't roll to the side on the narrow bench. Eventually, we all figured it out and I was back in my original hospital room. As we headed in, my doctor headed the other direction to deliver twins. Thus, I figured it would be a while before she came by to clear my departure.

It was now about 5 PM, so the whole procedure in the O.R. took close to 50 minutes, I think. I was hooked back up to the baby monitor for a while. Now, the shakes set in for me, mildly, as I had the adrenaline rush of realizing it was over and had gone fine. No emergency C-section, no troubles for the baby. I did have rather frequent and uncomfortable contractions (every 3-5 minutes). They weren't painful so much as "pinching" and they made it hard to breathe. My only concern was that I was actually starting labor. The doctor eventually did come in (maybe 5:45 PM?) and said she had no concerns about labor starting  - that it would have been very evident by now if that were going to happen. She also had our test results back from the lab... baby's platelet count was over 200,000!

I think she expected me to look as excited/happy as she did, but I confess I was in a mild-shock state and unable to react. Once it finally sunk in, I was of course elated. So, I was cleared to wait for labor whenever it arrived, and have a simple, straightforward, vaginal birth.

I dressed, signed the discharge papers, and was on my way at 6:00 PM. Jeremy drove me for celebratory J.B.'s pizza for dinner before we collected the kids at church from WAS night Gems and Cadets, where Grandma Di has left them for us.

I continued to have nearly continuous feelings of contractions (cramping? both?) until 8:30 or later. It was, again, uncomfortable, as it interfered with breathing, but not painful. We arrived home safely as a family. Nothing had changed, except on the inside I wanted to shout for joy. I felt like we had been given a new chance with this pregnancy, to put aside all the worry and concern and just enjoy our baby. Which is what I fully intend to do.

Just a general update

It seems past time to just give a general update on this pregnancy journey. That was how I had originally intended to use this blog, after all. I didn't expect things to get so sidetracked by all my angst regarding pregnancy outcomes and medical issues.

So here I am at 36 weeks and 1 day, and feeling reasonably good. My weight gain is reasonable (about 20 pounds). My blood pressure (as always, thankfully) is fine. My general pain and discomfort is remarkably low. (I had some significant shoulder and neck pain last week, but the chiropractor has set me straight, at least for the moment.) I still find any exercise difficult - walking, or even standing, for any length of time, especially at the end of the day, leads to excessive and uncomfortable contractions. But otherwise, I feel like I am in reasonably good shape.

The baby is very active - more than I recall from any previous pregnancy. She kicks and prods and rolls to the point where it is almost unpleasant at times - but it is at least reassuring that she is alright. I would prefer the movement to not having it, especially giving all the other angst I have felt surrounding this particular pregnancy.

I am dilated to 2.5 cm as of a week ago, and Dr. R concludes that "all the preliminary work is done. All you are waiting for now is active labor, which I think will be 2-3 weeks early." So, I now find myself on pins and needles a bit, expecting every new sensation to signal the onset of labor. Two nights ago, I was starting to convince myself it was time. I had had a long afternoon nap, so was up late that evening with Jeremy, and we decided to watch the first of his Dr. Who videos (his Christmas present from me). I was just lying down on the futon the whole time, but felt decidedly "off." I went to bed half-expecting to wake in the night in full labor. Obviously not, though. I guess it doesn't always hold true that an experienced mom will better know true from false labor. ;)

I am actually not feeling larger than previous pregnancies. The main difference I feel this time is that there is a lot more baby down low, in my groin, to either side. Dr. R keeps talking about a "normally more stretched out uterus from a repeat mom" so maybe I just have a looser, saggier pocket for the baby this time around. It can be a bit unpleasant to feel little feet or hands poking me there when I am sitting, as there is not much room or much padding. But bearable. I also feel the baby more up high than I did with John - more lung constriction and more heartburn. So, she is not a very large baby, according to the ultrasounds (maybe 35th percentile) but she sure has managed to spread herself out.

Well, even with a long nap at bedtime tonight, it is getting late. I need to get myself to bed. I have reached the point where I am don't wish to leave myself too short on sleep, knowing that any day just might be the one. Very excting!

A Decision Made.... Finally

I saw Dr. R. again on Wednesday - she squeezed me in based on a request from the nurse who ran my NST (non-stress-test) on Monday and concluded that I and she were both a bit confused. She re-explained all the options to me.

I was amused that Dr. R. explained it to me with a decision diagram that looked remarkably like the one I had sketched out for myself the night before. (The main difference, of course, is that mine is slightly more legible.) I suppose there is something reassuring, at least, to feel like your doctor makes decisions the same way that you do.

I followed up with asking for her to spell out clearly the risks of a C-section, so that I would know that I was making that decision based on good data also. It isn't actually the risks that lead me to want to avoid the C-section; it is just that I have a different birth experience in mind. But, knowing the risks (real, not imagined) seems like a valid part of the decision-making process. So, what she laid out was:

25% occurrence of "minor issues" including: loss of ability to urinate (I assume this must be temporary if considered minor!), urinary tract infections from catheter, blood loss (typically double a vaginal birth), wound failing to heal properly.

Less than 1% occurrence of "major issues" including: blood clot, pneumonia, transfusion, and some sort of infection of endometria (can't read her writing here) that leads to high fever, IV antibiotics, and rehospitalization for several days.

Less than 1/1000 occurrence of very severe issues, neither of which I can read or recall.

So, actually, it sounds worse than I expected. But still, not the real issue in my decision.

Dr. R. then proceeded to give me all kinds of amusing advice.  "You don't really have a wrong choice to make here. Many of my patients would just choose the C-section - they actually prefer that for their birth experience. But I don't think that would be you." [Correct.] "You know, it is possible to think too much, and agonize too much, over decisions like this. Some people can easily make up their minds, and be 100% committed to that. Others (like you or me) always have that doubt - we can never get past about 97% sure. But, when I have patients in these situations, I find that they generally make the right decisions for themselves, so just go ahead and choose and trust yourself. I also find that about 50% of the time, nature intervenes and somehow makes its own choice, anyway. For example, you choose a scheduled C-section for 39 weeks and instead go into labor at 37 weeks. Or, you choose a vaginal birth but then show up in labor and breech and get a C-section."

After talking it over with her, I came home and talked with Jeremy. "Suppose the baby's platelet count is 100,000 or more...then we definitely would want to proceed with a naturally timed, vaginal birth. Suppose the baby is breech... then we would definitely choose a C-section, since this is not the right birth to take a chance on a difficult situation. Suppose the baby's platelet count is 10,000...then we would definitely choose a C-section." In the end, I decided that my fear of harm coming to the baby would likely cause me to be tense during labor and make the process harder, so just knowing the situation is important information. Also, since I would in fact prefer the C-section if the platelet count is low, then I need to know if it is low. So, I called to schedule the cordocentesis.

This ended up requiring yet another visit to the doctor, this time a consult at Maternal-Fetal Medicine. That made how many trips to the doctor this week for this pregnancy? Two on Monday, one on Wedneday, one on Thursday, one on Friday. Not bad. Fortunately, I think it was a valuable consult that I had this afternoon. I talked with yet again a new doctor (to me) in that practice, Dr. D. It turns out that she will be the one to do the procedure, so Dr. F. (whom I saw in December and had said Dr. S. would do it) thought I should meet with her.

Fortunately, I liked Dr. D, on the whole. She seemed perceptive and sensitive to my concerns and questions. She said the whole point of the consult was to be sure I understood the procedure and felt comfortable to proceed. She seemed a bit younger than I might prefer (probably younger than I am by a few years) but maybe that gives me the benefit of fresh training and steady hands. She seemed sympathetic to my desire to not have a C-section, and able to see that as a reasonable choice. She confirmed that the risks of the various options are all somewhat unknowable, but that I was making a reasonable choice under the circumstances.

I did ask the blunt question at one point: "I don't mean to offend you, but Dr. F said that Dr. S does these the most often. How often do you do them?" She claimed to do them the second-most frequently. She didn't come right out and say how often, which left me a bit nervous. At least, though, she did seem quite familiar with the process. I didn't get the impression that I would be the first case since her residency, for example.

She explained the process a bit more than I had heard before. I would have fairly extensive prep, but the procedure itself would be about 60 seconds or less. She would not plan to give me anesthesia, but would have the anesthesiologist standing by in case an emergency situation arose. I would be prepped as if ready for surgery, therefore (IV, drape, etc.). I would have a local/topical anesthetic for the needle insertion, but she couldn't numb the uterus, so I should expect some significant cramping, something like bad menstrual cramps. (Why is it that every medical procedure involving any part of me from the breasts down to the hips is reported to feel "something like menstrual cramps?" I have never even observed that these are a very universal experience of pain or discomfort.) I would need to lie perfectly still, so if I felt anxious at all the anesthesiologist could give me an anti-anxiety medication of some sort to relax me. She recommended that I not plan to drive myself home, just in case the cramping was enough that I didn't feel up to it.

Her perception of the risks? A 1% chance of an emergency C-section. NOT a 1% chance of loss, as I had been told by Dr. F and Dr. R. So that seemed more encouraging, and yet that 1% loss was for all situations, and mine was supposed to be much easier, so I was already assuming a much lower risk, so now that 1% seems high. She said that emergency C-section might be needed if there were a bleeding event (ruptured artery in the cord, for example) or if the baby's heart rate dropped and didn't recover (there would be constant monitoring of that). On the other end of things, there was a small chance of rupturing the bag of waters, which would require a delivery within 24 hours, though not necessarily an emergency c-section. And in between, which she thought more likely than either of those outcomes, was the chance that the needle would irritate things enough to put me into regular labor after the procedure. So, since I will be essentially full-term (36 weeks and 6 days), not a huge concern, fortunately.

All of that information actually made me feel less comfortable with the procedure somehow, but it didn't change my mind about it being the right thing to do. The unfortunate thing I feel in all of this is that I don't yet have the sense of "peace" that I have experienced in the past after making a difficult decision. Other times, I have made the decision, not always fully understanding it, but feeling confident that it was the right one, within God's will. I don't have that now. But, I didn't have it for the week when I was essentially deciding to not do this, either. So, maybe I just won't find that peace with this situation.

So, that is that, at least for now. I go into the Labor and Delivery ward at 2 PM next Wednesday. The procedure is set for 4 PM. I expect I should be out shortly after that, if all goes smoothly. Di has already offered to take the kids, so that Jeremy can come and stay with me. I don't know if they will let him in, but having him there makes me more comfortable, somehow, so that if something does go wrong, I know there will be a conscious advocate around for my baby and for me.

Now, to turn my mind away from all this for a while. What will be, will be.

35.5 weeks and all is well!

I saw Dr. R. last Friday - last appointment of the day and week. Of course, it made for a late evening, since she is far behind schedule by then. She gave me her full time and attention, as always, which I appreciate, but tossed some new information at me which I couldn't fully absorb and process at that point. Of course, after the weekend to ruminate on it, I don't feel much further ahead.

First order of business - she set me up for the appointment schedule from now until delivery, which is basically to camp out at her office full-time. :)  I get blood draws once/week, Non-stress-tests twice/week, ultrasound once/week (quick ones, at least, just to check position and fluid levels), and doctor check-ups once/week. The scheduler at the check-out desk thought she could make all that happen in just 2 visits/week, of 45-75 minutes each. But, then she looked at the calendar and couldn't quite swing it. After 25 minutes of standing at the counter with her, contractions going the whole time, I gave up. She said she would find "whatever" and have the list ready for me when I next came in. Agreed!

Jeremy clearly feels this is excessive doctoring. I am inclined to agree on the surface. On the other hand, after 10+ years, I feel like I understand how Dr. R. works. She is thorough, definitely - more likely to order a test than not to. And she presents everything as low-key; nothing to worry about. But she does all the worrying herself. Then, if she finds a problem, she talks to me about it. If not, she doesn't worry me with it. I have learned to accept that style, and accept the tests she needs to make it work. They may be time-intrusive, but they aren't invasive or risky, anyway.  And in her defense, I do seem to have a complicated OB chart, this time around. Every medical provider who has the misfortune of drawing my case on a fill-in basis (new nurse, or a doc covering vacation, etc.) comes into the room scratching their head after trying to decipher all the notes. And this is in no way meant to disparage Dr. R.'s ability to document. There just happen to be a lot of unusual circumstances, together.

Anyway, once we agreed on a schedule for poking and prodding every 3-4 days, Dr. R. did a quick exam. She pronounced me dilated to 2.5 cm already, with the baby probably still in a breech position (as she was at the 32 week ultrasound). She then threw out one of her infamous Dr. R. predictions... "I'm gonna say...2.5 more weeks to delivery." Now, she loves to toss these sorts of things out, and is clearly joking at least some of the time. (For example, when she claims to call the sex of the baby after hearing the heartbeat at the 12 week check-ups, then reports that she gets those right 50% of the time.) I might have assumed the same for her delivery date predictions, except that for the rest of our meeting, her counsel seemed to be based on her presumption that I would in fact go into labor well ahead of 40 weeks. So now, of course, I am excited for an early delivery (and will be grumpy and out of sorts for every day past 38 weeks!). I had already been feeling ready to be done - turned that corner just past 34 weeks.

Dr. R did stress that it is certainly possible to be at 2.5 cm for another 5 weeks to full term. She just said that she didn't think I would do it. "You have done all the preliminary work for labor; all that is left is the active labor phase." She also based her guess on my previous deliveries at 39 wks (induced), 40 wks, 38 wks. So, I guess we will probably find out, eventually.

Then, we turned to the complicated discussions - how to deliver this baby. I am still stuck on that. She seemed to expect that I would just choose a C-section at this point. She also seemed fine with my suggesting that I might not. She seemed very well-apprised of the advice I had been given about being a good candidate for cordocentesis. (She even mentioned that she had lunch with Dr. Z from Maternal-Fetal Medicine this week and they discussed my case. Hmm. Wierd.) But then she threw in a wild-card on me. "Well, then we would do the amniocentesis at the same time."

"Wait, hold on, no one had mentioned amnio before now. I don't know that I want to take that risk!" Now, she actually did seem surprised. "But it is less than the cordocentesis risk by nearly an order of magnitude and you are contemplating that!" Well, I didn't calculate it quite the same way. Yes, the "published" risk of an adverse outcome for cordocentesis is 1/100. For amnio at this point, it is 1/750.  But Dr. F had convinced me that my REAL risk from the cordo is much less than 1/100, because of my particular circumstances. Dr. R. agreed that would be the case, but wouldn't seem to budge from the 1% risk as a marker or comparison point. Somehow, I had become comfortable with a risk of "way less than 1% but it can't be quantified" but couldn't be comfortable with a risk of 0.13%. Perhaps it is illogical, but there it was.

So, why did Dr. R. want me to do the amnio, when no one had mentioned it before? Well, it seems that she is "not allowed" to schedule a C-section for earlier than 39 weeks without it (it demonstrates lung viability). I didn't connect the dots at the appointment, but later thought, she must be assuming that the point of the cordocentesis is to determine a problem with platelets, and if it is there, we would want to do a C-section right away, so having the amnio would be needed. Plus, amnio seems like no big deal to her. "We do it all the time; we used to not even use ultrasound at this point in the gestation - we can just feel for a soft spot." But I don't know that the plan with Maternal Fetal Medicine had ever been, necessarily, to do an early C-section; only to rule out a vaginal birth, so they didn't mention the amnio. Or, perhaps, they didn't mention the amnio because it is so routine to them they didn't even think it was worth mentioning.

So now, I am a bit confused about the medical advice. To add to the variables, it was clear from our discussion that Dr. R doesn't really expect me to go to 39 weeks. Thus, if I skip amnio and schedule a C-section for 39 weeks, she expects me to end up at the hospital in labor anyway, in which case I would be facing a decision on the fly for the C-section rather than a planned/scheduled one. (Which she said is also fine, but just may require more forethought on my part to be able to make these decisions.) Then, to complicate the whole mix a bit more, the baby was breech at last known positioning. In that case, I would almost certainly have a C-section, so the cordo and amnio would both be moot.

Today, I went back for the first NST (passed!) and blood draw. The nurse (new to this pregnancy, but familiar from John's 3.5 years ago) seemed a bit bewildered by my case file, although I appreciated her general level of experience and willingness to sort through it rather than just rubber stamp things. She thought the baby was probably not breech now, so I should move up my first ultrasound from Thursday to today so I can at least answer one level of "what ifs." So, I scheduled to come back a second time in the same day for that.

Sure enough, baby is head down as of today (Monday). And, she has lots of fluid (good news)... which also means that she could easily flip breech again in next few weeks, if she feels like it. But probably won't. Still, I confess I felt a bit disappointed by this news. If she were breech, I would feel like I could just plan the C-section in good conscience, and quit the navel-gazing over it all. Since she is now head-down, I still feel like I need to make a good decision about delivery. C-section would be "easier" in many respects, but if not necessary, it just doesn't seem like a good idea (for me or the baby). So, the clock ticks away and I am no closer to a reasonable decision. Perphaps I will end up making this one by not making it, showing up in labor with my mind still not made up. At that point, I have to decide whether to proceed with a regular delivery (and hope for no bruising and/or normal platelet count) or to proceed with a C-section (and perhaps kick myself afterwards for the unnecessary trauma if her platelet count after birth turns out to be fine).

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.