Diabetes has a sick sense of humor.

Following my hypoglycemia “incident,” I have been trying to get my medical ducks all lined up for a thorough inspection.  Making doubly sure to scrub behind my ears, floss between my teeth (ironically this broke my permanent retainer requiring an emergency trip to the orthodontist, but hey, it was in the name of hygiene), take my vitamins and do an extra plank or two before bedtime, I went into my May endocrinology appointment with the expectation that I was doing everything that could be done for optimal self-care.  Upon seeing that my HgA1C had dropped from 5.8 to 5.3 over the past three months, however, my doctor concluded that I’m probably doing too much to address my diabetes and that’s likely why I had the “incident” in the first place.

“You’re treating your diabetes like you’re still pregnant,” she says. “Your glucose control is too tight and you need to let your overall numbers rise or you’ll be facing more frequent occurrences of severe hypoglycemia.”

Stressing that my concept of the “ideal glucose range” (70 - 140 mg/dL) is only truly necessary for the conception and gestational development of a healthy fetus, my endocrinologist encouraged me to recalibrate my expectations and sight my blood sugar goals above 100 mg/dL so as to provide a buffer between me and, well, the pavement.  Attempting to introduce the concept of leniency into my daily regimen, she argued that my typically aggressive approach toward glucose management will only create more problems rather than solutions as time goes on.  Explaining that while it would logically follow that I become better at diabetes control the longer that I am a diabetic, she said the opposite is actually true because the disease becomes more erratic and more difficult to pin down the farther you go away from your honeymoon phase (which, if you remember, is the period of time following diagnosis where the dying beta cells in your pancreas still makes a small amount of insulin).

“But, what about the adverse consequences of letting my glucose numbers rise?”  I asked.  “Won’t slacking off on my self-care only result in organ damage down the line?”

Taking a deep breath, she responded with the thoroughly uninspired “maybe.”

Explaining that the technology for HgA1C measurements have only been around a short while and that there hasn’t been long term research done on the correlation of A1C management to complications or the lack there of, she said that doctors don’t really know what glucose range to recommend because there are life threatening consequences if you go too far toward either end of the spectrum.  On one side, tight regulation like I do creates frequent medical emergencies for diabetics due to the severe hypoglycemia it creates; whereas unconstrained hyperglycemia on the other end of the spectrum directly causes organ failure, neuropathy, blindness and a whole host of other issues one would rather avoid.  Thus framing my position (rock-me-hard place) as one requiring a very delicate balance, she indicated that she, at least, would be more comfortable with my HgA1C being between 5.8 and 6.0 by my next appointment in August.

Pulling another rendition of my all too familiar phrase of “yes, but” into the discussion I told her that “the perinatologist said that, were we to get pregnant again I should keep my A1C under 5.2 to prevent the complications we saw with this last pregnancy.”

“Well, that’s ridiculous,” she retorts.  “With an A1C that low, you’re more likely to have a hypo-fall and hurt any future babies than to protect them from macrosomia or polyhydramnios.”

Stating that such “minor” complications were (and likely will be in any future pregnancies) unavoidable due to my lengthening history with the disease, she explained that my “diabetic-age” essentially undermines the effects of tight regulation and probably caused the complications with FG’s pregnancy in spite of my stellar A1C throughout the ten months.  So although my A1C this go around ensured a perfectly formed heart, prevented the development of spina bifida and made all concerns about miscarriage or stillbirth a non-issue, it simply wasn’t enough to safe guard against all of the high-risk nuances of a diabetic pregnancy in the face of my crippled pancreas.  But, in light of the existential dangers more frequent hyperglycemia would cause for a growing baby, I think I can cope with the unpreventable complications of larger babies and excess amniotic fluid so long as my glucose management efforts to avoid the worst continue to pay off.  And, frankly, FG definitely counts as paying off!

So long story short, the rational side of me knows the only action plan from here is to set the longer term question about potential future pregnancies aside in favor of very real, here and now self-care concerns and choices.  The emotional side of me, however, is completely upset and frustrated by the “a’int nothin’ you can do about it” attitude I feel like my pancreas is giving me and no matter how I fight its sass-mouth, it still seems to find a way to breach my defenses and leave me vulnerable to its whim.   It’s completely unfair that my growing knowledge of and comfort with my body on artificial insulin doesn’t easily equate to a well balanced, healthy lifestyle.  In some sense, I am envious of those people who have Type 2 Diabetes as their positive effort to address their condition through diet and exercise directly impacts their overall outcome for the better… whereas I can go run a marathon, cut whole food groups to nurse, monitor my glucose numbers, drink water by the gallon and it won’t matter.  No matter what I do, I’ll still be a diabetic and no matter how much “expertise” this brings, I’ll perpetually be relegated to rookie status thanks to the sick humor of chronic illness. 

Week 34, part freaking two

Hmph.  Double hmph.  And grump!

It has just been one of those no good, down right horrible, get off my back, leave me alone or give me chocolate kind of days.   I didn't sleep well last night because GW, who is usually the best snuggler in the world, kept trying to head butt me in the chest to make space for his legs to go sideways on the bed and that of course made the fact that the alarm went off extra early so that HB and I could get to the hospital on time for my bi-weekly testing all the more gruesome.  Normally an hour drive, we left an additional 30 minutes early to fight the in-bound morning traffic to NOVA and DC and managed to get to the valet parking at the hospital with a few minutes to spare before my 8:30 appt.  Of course the antenatal testing center was running a bit late and we wound up sitting for an additional 45 minutes, but whose counting? (Oh yeah, me).

So we finally get back to the non-stress testing area and it's beyond freezing -- and for those of you who do not know me personally, I do not do well with any temperature below 70 degrees F.   The nurse, who I'll admit was very nice, squirts the non-heated (gasp!) goo on the paddles and hooks it up to my belly.  About fifteen minutes into the test she grumbles about the sleeping baby, gets me cold ice water to drink (again, gasp!) hoping to wake up the baby.  After the next fifteen minutes she decided to shut off the monitor and get the doc's take on my NST since the accelerations were borderline to where they ought to be (ideally they should rise by 15 beats per minute over the course of 15 seconds or more, Baby's were going up for like 13 seconds).  Leaving me sitting there in frigid goo under an air conditioning vent for another while, she eventually came back to announce that the results were acceptable and she sends HB and I back to the waiting room for the next available sonographer.

Waddling down the hall back to the waiting room, we turn the corner and find that the formerly sparsely filled room is now as packed as it possibly can be with pregnant women and significant others.  We found ourselves a corner and, to fill the dragging time, I started counting...  at any given moment there were between 11 and 16 pregnant women in that dang room.  Some closer to popping than me, others barely showing -- but all obvious with their hospital band bracelets.  It's funny how pregnant women take on different shapes and how differently we all carry... at 8.5 months I look like the typical woman does at six months and one woman's jaw actually dropped when she learned my due date is only two weeks after hers since we look so drastically different.  Course she'll probably get lucky and meet her baby sooner than I will, so size - ladies and gentlemen - really doesn't matter.

Anyway, the sonographer finally calls me back and does the quickest sonogram of my pregnancy yet.  She absolutely knew what she was looking at and clearly took speed clicking classes because bang bang bang and "you can go sit down and the doctor will call you back shortly."  I think if I had been a normal pregnant woman and that this was one of the very few times I could see my baby on the monitor I'd have been annoyed, but since this was sonogram #15 and I wanted part two of breakfast asap it was perfectly fine with me.

So back out to the waiting room we march and waited among the collection of mamas.  We watched the third interview with Sarah Silverman on morning television, we cringed at a 3 year old little girl with horrible manners boss her mother around and we joked about our lapse in judgement at leaving our entertainment (GW) back at home.  Some time later, this random doctor comes out and calls my name and I have no freaking clue who this guy is.  His jacket says that he's a "MFM MD" which is at least one step in the right direction, but seeing as I'd never heard of him, he looked like he is 12 years old with facial hair and I admittedly have little to no faith in medical fellows I was not exactly thrilled to see a non-familiar face behind the desk.  After pulling out a phone book to sit on and figuring out which way is up on my several inches thick chart, Dougie Howser then reviews my tests says that things with the baby were fine with the exception that the AFI was a bit high (even though it was lower than Wednesday).   Understanding that it was in normal limits, I moved on from that comment and handed him a print out of my blood glucose charts from the last three days and that - my friends - began the worst part of my day...

Not understanding the charts or what information I was trying to explain to him, Dougie decides to take my print out down the hall to my normal doctor (why couldn't I just see him in the first place?) for his take on things.  The next thing I know is that we're being called into the principal's office for a serious parent-doctor sit down...  Thoroughly disappointed in my asking him for "input" (which I did not), the normal doc began a lecture about insulin care during pregnancy and how off my blood glucose numbers are and how poorly programmed my pump must be.  Looking specifically at my pump settings and seeing that my basal rate is no where close to 50% of my daily insulin usage (which it ought to be), he said that I needed to stop self-managing and start working more closely with my endocrinologist or that he'd need to take me off the pump and put me back on injections so that he could manage my glucose.

ONLY OUT OF MY COLD DEAD FINGERS WILL 

A DOCTOR PRY MY PUMP AWAY FROM ME. 
(Adapted from a Charlton Heston quote)

I attempted to explain that I've tried to work with my endocrinologist's office and that they typically aren't responsive or they just tell me to do what I'd otherwise do for myself, but that just seemed to result in more frustration on my doctor's part than understanding.  He then said that I needed to get into see my endocrinologist today for an emergency reprogramming of my pump or that I'd at the very least need to begin seeing a different NOVA based endocrinologist next week.  I tried to explain that my concern in bringing up my blood sugar with him isn't that I need external input in how to decrease my settings (that's straight forward and I've done it successfully for the last 34+ weeks without problem), but the cause of the lows -- to which he pretty much left me with no answer except "see you Tuesday."

Thus leaving the hospital in near-tears from the feeling of being completely misunderstood and the "you're a horrible mother" treatment, I immediately called the endocrinologist to pass the buck along.  Fortunately having space for me in the schedule once we got back from NOVA, I was able to get in and sit down with my endocrinologist to go through my logs with a fine tooth comb.  Agreeing with me - and the NOVA doctor - that my logs show far too many lows, she did exactly what I would have done on my own and lowered my basal rates even farther.  Cutting every single basal setting by 0.050 units, my total daily basal rates are down to 12.875 units!!  I asked her about the randomly high postprandial readings, but she said they weren't of concern to her because of the extreme prevalence of hypoglycemic lows and she lectured that those 40s and 50s should be my only concern as well.  When asked about how I should address the chastisement I received for the 50-50% ratio of daily bolus to basal insulin usage, she essentially told me that my perinatologist would just have to get over it since that's just how things are going.

So... my perinatologist yells at me for horrible diabetes care and my endocrinologist barely does anything to "solve" the problem AND neither have an explanation for why my sugars continue to drop but rather they each individually want to point the finger at the other and say, "well, that's their job."

AGH!

I don't know... I feel like my blood sugar control has been pretty good for the pregnancy all things considered.  These lows are definitely concerning to me and they make me frustrated and scared, but I can recognize them and treat them as they happen so it's not the worst case scenario of hypoglycemia I could face (knock on wood).  I'm angry that my doctor up north would blame me for the problem I am only trying to fix and I'm annoyed that my doctor down south is being so passive...   All I can say is that I am hella happy that the baby is due in 25 days or less (less, please God, let it be less) and that I can put this excessively hands on medical care out of my life for a while.  I'm looking forward to working with our pediatrician (aka a doctor for someone else, not me) for regular well-baby appointments and I cannot wait to get back into running.  Any outlet for frustration besides chocolate would be fantastic right about now, but hey, I'm a hypoglycemic, post-placenta abruption, 8.5 month pregnant woman on modified bed rest so that just isn't going to happen.

Pass the chocolate.

Hmph.

Week 33

It's hard to believe it was a month ago today that I went to the hospital for the placenta abruption.  That day seems like it was just a couple days past and yet it also seems like eons ago... on one hand the stress of the experience and the nerves of it happening again make me feel just as scared as I did in the truck driving to the Stafford Hospital ER, but the boredom and anxiousness brought on by modified bed rest and limited activity make the action of it all seem like a completely different lifetime.  Overall I'd venture to say I'm far more agitated about the progression of things than I'd like to admit, but I'm sure if you were in my shoes you'd be just as concerned and anxious to have a healthy baby to hold and this pregnancy behind you.

Apparently NST go a lot faster after downing
Starburst to fight off blood sugar lows...
Go figure, sugar makes Baby active.

We had our first weekly appointment with the Perinatologist on Tuesday and that officially kicks off the routine non-stress tests and fetal weight screenings.  They did the 13th sonogram of this pregnancy and, much to my relief, it showed that Baby is looking pretty good.  The amniotic fluid levels are normal, the placenta seems to be as stable as it can be given its injury (and does not show signs of advanced calcification), her weight is a bit high at 4 lbs 12 oz but more or less on track for her gestational age and she fortunately remains vertex.  The sonographer was a bit concerned about Baby's leg growth and repetitively measured her femur to ensure her readings were accurate... but her worried expression vanished when she looked at HB and announced "oh, you're the source of stumpy legs" (no, I did not stifle my laugh).   Unfortunately for our daughter, she wont have my long legs, but I think it's actually safe to say that HB is quite relieved and happy about that.

Looking over things, Dr. Bronsky was generally happy with the progression (or lack there of with particular regards to my cervix) of things and recommended that I "continue doing what you're doing" (ug).  He agreed that my recent blood sugar logs are of concern and asked me to keep them posted if hypoglycemic episodes persist because while it looks like the cause may be Baby's appetite (trend estimates for her birth weight were I to make to to 40 weeks are currently in the mid 9 lb range), my placenta has been a persistent concern of theirs and they don't want to take chances.

So I'll head back in again next week for another round of flaming hoops to waddle through and we'll go from there.  If things continue as is, we'll be scheduling an induction (or c-section, depending on how things look at that point) for the week of Thanksgiving or the week after.  While I am glad things are stabilized enough for the doctors to make such statements, I'd be lying if I didn't admit that I hope Baby arrives a bit sooner than that... the persistent concern for her safety, the continuation of increasingly painful contractions and the heart wrenchingly painful look of disappointment on my son's face when I tell him that no, I still cannot pick him up is just a lot to emotionally handle for another four or five weeks.  Obviously I want her to be at a gestational age that is healthy for her to come out and I want to avoid the use of the NICU if we can, but as soon as those boxes are checked lets get this baby girl out and move on from pregnancy complications to new baby bliss.

In additional news, I also had an appointment yesterday with the Endocrinologist since the whole plan to fax in my logs completely fell flat.  The nurse practitioner thoroughly reprogrammed my pump and decreased my insulin rates almost across the board.  Two weeks ago my total daily basal rate amounted to 17.5 units and now it's back to 15.3 -- while that might not seem like a lot to those of you who are diabetic or understand insulin usage, it's a huge amount for someone like me who is so extremely insulin sensitive.  She also adjusted my target blood glucose ranges to be slightly higher to ensure that I'm not dropping lower than I really need to -- so even if the 70s are "safe" to be in, why not shoot for the 80s or 90s and hope for better bg averages?   Fair enough.  I'll go back and see her in three weeks if my blood sugar stabilizes and maintains safe ranges, otherwise I'll see her sooner as necessary.

So... where does that leave me?

Well, at 33.5 weeks, it leaves me waiting for what's next and prepping the nursery, house and family for the arrival of Baby.  I've been doing a bunch of research on diabetes and infant mothering (remember, I'm brand new to this combination) and it's amazing how intertwined the pancreas is to each of the choices I make and, since that little baby is entirely dependent on external care for quite some time,  her overall well being.  As this post is long enough as is, I'll save it for another day, but let it suffice to say that I'm generally overwhelmed by information overflow, physically uncomfortable, anxious for safe delivery and ready to get this show on the road... Granted ready for Baby and ready for Hurricane Sandy are two very different things, but let's just hope that Baby understands that things have been complicated enough as is without being born during the - to quote the Washington Post - most "unprecedented and bizarre" storm that "may be unlike anything the region has ever experienced."  We'll see how that goes.

Blah A1C

After four weeks of no appointments (I missed my last appointment when I was at the hospital), I went into the endocrinologist this morning for a regular diabetes and pregnancy check up.   Seeing as my blood glucose numbers have been all over the chart for the past several weeks, I wasn't surprised to have Dr P report my HgA1C has gone up.  At my appointment in August my number was fantastic at 5.3 which is completely within "normal people" range, but this go around my number is 6.2 which although it is still "healthy" for a diabetic, it is higher than I ought to be while pregnant.  The perinatologists don't want my HgA1C over 6.0 for fetal growth purposes, but given the steroids they injected to mature Baby's lungs if she needed to be delivered it's not at all surprising that my numbers are inflated.  As long as the number is heading back down the right direction for my next endocrinology blood panel this number should be no big deal, but if it's still high or continues to go higher, then we'll need to start worrying a bit more about the impact diabetes (on top of all the other complications) may have on delivery and Baby's health.

To give me a better shot at a lower HgA1C in a few weeks, Dr P helped me fine tune several of my carb ratios (the lowest is now 7.5 carbs:1 unit insulin) and a few of my basal rates to reflect trending dips and peaks my logs illuminated.  Given that I haven't been eating much since I've been home it's much easier to see where my respective basal and bolus rates are off; for example, my postprandial after dinner has been high several nights in a row indicating that my bolus rate after 5 PM is too low, but my afternoon blood sugars consistently dip into the 50s and 60s after several hours without food so that means my after 3 PM basal rate is too high.

I'm sure all of this will be out of date and need to be changed tomorrow (hoping and assuming my placenta is still working it's "magic"), but for the time being I should be on the right track.  Seeing as the best performance of my placenta is hell for my blood sugars and that I'm supposed to be on more bed rest rather than less, Dr P suggested that I fax her my blood sugar logs twice a week starting Monday rather than coming in to the office once a week for further insulin adjustments.  While I'm admittedly stubborn about dealing with my disease on my own, I'm actually really grateful to her for this flexibility and for her willingness to provide whatever support and assistance she can given the complexity of my situation.  I expect that if my non-existent appetite continues that she'll be mostly monitoring my basal rates for accuracy...

I honestly don't know what to make of my weight or my appetite at this point in the pregnancy, but the perinatologist on Tuesday didn't seem concerned so I'll take my cue from her.  The nurse I had today, however, was the most concerned I've seen any medical professional be about my weight. In fact, she ironically (given the number of Type 2 patients they see) encouraged me to go straight out to get a cheeseburger "or better yet, a double cheeseburger and fries" to pack on a few more pounds.  I'm still six pounds down from when I went to the hospital and I'm at the bottom end of "acceptable weight gain" for week 31 at 17 lbs, but even if my weight is a problem I highly doubt that high-fat, high-sodium fast food is the solution for me or for Baby.  Super indulgent chocolate cake with fudge, maybe, but I have yet to hear a doctor of mine prescribe that.  Perhaps that'll be a point of conversation next week?

Or maybe I'll just go for it with extra cherries and insulin on top since tomorrow is, after all, GW's 3rd birthday :)

Endocrinology appointment blues.

Friday evening I went into the endocrinologist for my every three week diabetes and pregnancy appointment only to have her announce I need to come in every two weeks AND call her every few days. Thus far in this pregnancy when I've had issues with my blood sugars, I've just adjusted my own pump rates and rolled out without continuous help from a medical professional.  But now that the placenta is making me increasingly insulin resistant on a reliably horrid three-to-four day cycle the fine tuning that goes into making my sugars just right is requiring a collaborative effort.

I guess it's a positive thing that she wants to be more involved and to help make sure that my tight control continues to be tight, but, realistically speaking, you could say that I am both insulin and assistance resistant...   my independent, "I've got this" nature doesn't really serve me well in such situations.  I mean after 3+ years of marriage I am still learning to accept HB's assistance when he offers it and since I've only been diabetic for a year and a half-ish, it's just weird to be giving someone that kind of trust and input.

Okay, yeah, I know that is what I am paying her for and I appreciate that she is taking the initiative to push me, but it's a source of self-pride that I've done most of my diabetes care on my own with the help of medical professionals limited to writing necessary prescriptions.  Setting pride aside, I can rationalize and am working to accept that she's here to help limit the high bgs I don't want to subject Baby to and to prevent the low bgs that are increasingly dangerous due to the risk of falling in the third trimester. Makes sense, right?  And any way, since my endocrinologist isn't associated with the hospital I'll be delivering Baby at, I'll gain 100% of my diabetes independence back for game time any way and that's a fair trade off in my head.

On a different note, the big problem I had with my appointment on Friday was that it took almost a hour for me to get back in to see the doctor.  I was the last appointment of the day, so I understand that earlier delays in the day in combination with exhaustion makes for an expectable lack of promptness but when the office requires that all insulin pump users suspend and remove their pumps upon arrival so that they can download all of the data for their charts the delays can be irritating.  So while I was able to remain patient for their tardiness, I was surprisingly anxious and grumpy about my pump being disconnected so long.

HB couldn't help laughing at me for this because of my inconsistency - on one hand liking to take my pump off during infusion changes and on the other hand being visibly uncomfortable with my nakedness without it at the doctors office.  And while he has a point, I have to argue that it's completely different circumstances and reasons... at home, I voluntarily take off my pump and I make the choice to actively protest my pancreas; at the doctors office, I involuntarily take it off because of their data necessity.  The purpose of having it off is disparate and both situations introduce vastly different emotional mind sets... so, yes, I love not wearing my pump, but of course I feel naked without it.

Really, what else have you come to expect from me?

Any way, we'll see what my sugars do the next couple days and how the call with the doc goes on Monday.  I anticipate I wont be getting out of this an every few day phone call... ug... so God grant me the serenity to accept the things I cannot change and just move on.