Monster

On the outside, a woman approaching her medical team asking questions about pregnancy with pre-existing diabetes seems to be a confident woman, merely doing her due diligence in preparing for the toughest role in her future - asking the right questions, gathering facts, paving the way.

But on the inside, that woman is panicked. She has heard from some older relative about how she shouldn't "risk it." She has been told by some medical professional at some point that she'll have to have "perfect" blood sugars (really? perfect?). Dr. Google has thrown her hundreds of scenarios and "facts" and concerns.

What she needs from you, Doctor, is a careful and compassionate hand.

I had my kids at ages 30 and 32, but my journey toward getting pregnant started long before that. Long before that. When I was 24 and constantly butting heads with my endocrinologist, my friend Janet told me about her new doctor - a woman - who was very supportive of her desire to get pregnant. She said she'd switched from our endo (who had said "never gonna happen") and I jumped ship right along with her. I wasn't dating anyone, I hadn't yet met my husband, and my A1c was 8.6% - the lowest I'd seen in my lifetime - finally in the single digits.

Dr. M promised me that we would get there if that was what I wanted. And we started working.

Shortly after I was married at age 28, I saw my first A1c under 7 and I cried. Oh, how I cried. "I can do it," I told myself with magnetic poetry as I posted it on the fridge, July 2008.

I let my amazing endo guide me in all my steps. She told me which OBGYNs she had sent patients to, she moved me to the resident CDE in charge of the preggos, she called me personally to greenlight me when I hit the magic number of 6.1%, and she was this lucid, brilliant, strong voice of reason when others on my OB team demanded numbers and targets that were unrealistic.

She was the one on my team who told me that no one could isolate whether my ketones one evening were from dehydration, starvation, a bad vial, a bad site, or whatever and assured me that my baby would be fine. She was the eyerolling smartmouth who said that if I never went over 120 an hour after a meal (as my perinatalogist was demanding), I'd be "on the floor" by the end of my insulin action.

This is the kind of team you want on your side during a pregnancy and you have every right to that kind of care.

Care. Not scare.

On August 8, I saw what the alternative would have been and I have spent the last few weeks disgusted. Incensed. With an anger roiling in my stomach until it bubbles up into this post. I thought I'd wait until I calmed a bit, but I am more angry today listening to the archived video again than I was the moment I heard it live.

Tidbits and Tricks

Today's Prompt: Learning. Share something you learned from another Health Activist (that everyone should know!).

First of all, I am not a licensed medical professional. I'm not trained to give advice on anyone's diabetes but my own.

That being said, I want to share a revelation that I picked up online that changed the course of my diabetes. It changed my blood sugar spikes. It lowered my A1c. I credit this piece of advice more than any other in getting my body ready for pregnancy. It changed everything.

It matters when you take your insulin.

Online we call it pre-bolusing.

The last few years, continuous monitoring has taught medical professionals a lot about how insulin works in the body. When the newest fast-acting analogs came to market, we were told we could take them right on top of meals. When my doctor started me on Apidra just after it was approved by FDA, we thought it would help me because I usually bolused after meals and this insulin would supposedly accommodate that habit.

Fast-forward to the days of continuous monitoring.

We now know that the "fast" insulins are not as fast as we thought. When taken on top of (or worse, after, meals), Humalog/Novolog/Apidra miss the post-prandial (post-meal) spike entirely. They should be taken earlier. I won't give advice on how early, as I think it can vary from person to person, but I know how many minutes before the first bite of food works for me at most meals.

The pushback I get from most people when I suggest pre-bolusing involves one of the next two arguments: 1) But what if I go low before the meal? and 2) But who knows how much little Timmy will eat? It's easier to bolus afterward.

I'll address each of these valid concerns.

My Fault

"It's not your fault," says the physical therapist as she shows us the photos they've taken of the baby's head.

I nod. It's my fault. My face betrays nothing of what I'm thinking.

"It's nothing you did," she smiles reassuringly.

It's something I did, I think. Or didn't do. It must be.

I think of the repositioning tactics I tried but how he still insisted on sleeping on his right side. I think of how many times I failed to notice him preferring turning to his right. How I didn't have torticollis on my radar because he seemed to have full range of motion in his neck.

Dibbs getting his DSI (imaging) for his helmet.
He licked the stocking on his face. And drooled a lot.

"No, it's just that he was a big baby and he didn't have a lot of space in utero. It happens."

Aaaaaaand...there it is. The kicker. This woman doesn't know that I have type 1 diabetes. Doesn't know that "big baby" is one of the many phrases we tire of blaming ourselves for. And it's all the ammunition I need to metaphorically shoot myself with the guilt gun.

So how did we do?

That's a great question.

Pre-Operation:

My Blood Sugar: flatlined for 12 hours between 108-117 leading up to c-section (see 6 hr graph above). Perfection!

My Pump: removed just before surgery and replaced with an IV insulin drip

My Insulin: They put me on a Novolin R drip of 1 unit/hour. (Really? R?) They also started a D5 (dextrose) drip. Yin and Yang!

My Blood Pressure: All over the place - the systolic would be too high, then just the diastolic. Then it would normalize. Nervous much? My blood pressure never had a problem during either pregnancy, but before both surgeries, this happened.

Epidural went in easily, but before they pushed any Fentanyl through it, I was struggling with horrible nausea. My nurse and anesthesiologist determined it was from being flat on my back under the unusually large weight of my uterus. Once they dosed the Fentanyl, I got the shakes something fierce. (This is one of many reasons why I don't regularly do opioids.)

During the Operation:

My Blood Sugar: I lay with my arms out to each side, BP cuff on right arm and Dexcom receiver in my left hand where I could check it as I liked. My BG immediately started climbing. Before the incision was made, I was 134 and climbing. As they sewed me up, 169.

My Pump: I was missing it.

My Insulin: R is a joke. I should have put some of my own insulin on board before disconnect. If Apidra/Humalog/Novolog are jet airplanes, R is a kid on a bicycle.

My Blood Pressure: It was normal throughout.

The nausea from the weight of my belly as I lay on my back was so overwhelming that I requested a vomit bag and had to use it. They pushed some Zofran through my IV and that helped, but honestly, I just needed the kid and all his fluid OUT. This time the epidural knocked out any sensation from my ribs down. I felt even less than I remembered feeling during Sweetie's birth. The catheter didn't tug or hurt like before. It was just...easy, quick, painless. There was immediate relief when they removed my 10 1/2 pound son and they couldn't stop talking about the large volume of fluid in there with him.

Post-Op:

He was born at 8:23 and, by 8:51, he was skin to skin with me being wheeled into post-op where we were encouraged (!) to immediately start breastfeeding.

He seemed a little jittery, so I was curious about his BG, but when they finally tested it, it was 50. Totally newborn normal. (Sweetie had been 54 at birth.)

We were held up in post-op for a couple of hours while they got a room ready.

Because of my recent MRSA infection, there were lots of "contact isolation" procedures they had to follow as far as our room was concerned. Throughout the week, every hospital employee who entered had to wear a plastic gown and rubber gloves. Infectious Diseases says I can be retested a year after my infection, and after three negative tests, I'll be scarlet letter free, so to speak. Until then, plaguesville, population me.

My Blood Sugar: By 9am, I was 196. 10am, 236. 11am, 224.

My Insulin: I took an injection of 5u Apidra (secretly) to correct the 235. But as I continued to hold there over the next hour, it was clear to me that I needed to trash the dumb bag of R and get my own Apidra going.

My Pump: At 11am, I filled a pod and kick-started my Omnipod PDM at my new basal rate. I also bolused another 2u of correction. By the time we got to our room around noon, I was 183. Better.

I could give you all a lot more details about my management through my stay (see log below), but the long and the short of it is that, once I brought the post-op high down, my blood sugars stayed between 68 and 173 the whole hospital stay. My goal was between 80 and 200, so I feel great about that.

The nurses ranged from curious to impressed to downright marveled in response to my continuous glucose monitor (Dexcom Seven+). My L&D nurse wanted it right by me throughout surgery rather than have my husband hang on to it, and my postpartum nurses would bring other nurses in to see it.

They were a little unsure what to make of my self-monitoring and pumping though. They all wanted to stay abreast of my most recent BG reading, but some nurses bugged me about how much I was bolusing and when. I felt less comfortable sharing that - probably because I regularly 'adjust' suggested dosages based on my CGM graph trends, how I feel at the moment, or whether or not I trust the aggressiveness of a particular correction factor. And I was also tweaking basal insulin rates as necessary each day on the advice of my endo (who stopped by my room daily).

The only nurse who drove me CRAZY was Nurse Chattypants. She was so insistent that I touch my incision scar that she grabbed my fingers and forcibly jammed them along my pubic line - um, thanks, but NOT cool. Anyway, she comes in for her first shift with me and rolls me on my side saying she needs to inspect my pump dressing (pod was on my lower back). I was like "what the HELL??!!" and then she kept asking if I needed her to tape it up for my shower. She's so lucky that I don't punch people in the face as a general rule. I told her that my diabetes care was my concern and that I trusted my nurses to be there to care for my postpartum needs. Didn't stop her though. I was in her care twice during my stay for 12 hrs each time. She. Never. Shut. Up.

When I called to place my first dinner order to the Dining Services desk and asked about meal delivery times so that I could time my insulin, the dining crew asked if my doctor meant to order me the "diabetic diet." I skipped the teaching opportunity, rolled my eyes and laughed. "No, I'm breastfeeding. Thanks. The regular menu order is correct." It was skimpy to begin with - can't imagine what their idea of "diabetic diet" was.

Everyone but me and my endocrinologist seemed concerned about whether my diabetes was "stable" after having the baby. Even despite blood sugar values that were almost non-diabetic. When I asked when the earliest I could be discharged was, even my OB said it depended on what Dr. M thought. When I told Dr. M that, she laughed. My numbers were boringly stable (um...no highs AND no lows - practically cured) and, as usual, there was nothing to indicate I couldn't roll with it if they weren't. I had less swelling in my feet than anyone else on my recovery floor. I was lucid, responsive, wearing regular clothes. I was walking the halls and to the nurses' desk, even when my epidural had fallen out and I didn't realize it.

Come ON, freaking hospital people. Stop micromanaging shit you have no more than a cursory textbook understanding of and watch a HOSS living it.

We eat like you, we usually test our blood sugars WAY more often than you think we should, and I resent your help. It's much more complicated than "Oh, you're on insulin? What's your dose?" Asked of me twice. Ummm...how much time have you got? I'll explain my four basal rates, my four variable insulin:carb ratios, my three target glucose levels by time of day, and the four different correction sensitivity factors. Then we'll take my average total daily dosage and discuss the average bolus/basal breakdown by percentage, factoring in the difference between correction bolus and meal bolus. After that, we will talk about how my faster acting analog that none of you have ever heard of peaks differently than the insulin you're used to dosing here and at no point will I allow you to even touch my pump. Got it? Now ask me again how much insulin I take as though it's a pill I swallow before meals.

Anyway, the staff at Dallas Presby really did take excellent care of me. The surgery was quick and painless, the recovery is going well, and I'm home with my 1-week-old and Hubster and Sweetie where I belong.

My Current Blood Sugar: 73 and steady for the last hour with an anticipated low in another 1-2hrs due to recent breastfeeding session. Snack is imminent.

My Pump: pluggin' away

My Insulin: currently running a basal of .90u per hour, which I lowered 10% from where it was two days ago due to going through half a bottle of glucose tablets in a day

My Blood Pressure: eh, feels okay to me

In the Thick of It

Today’s Prompt: Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!

We must have fifty toddler board books scattered on our living room and bedroom floor. I try to keep them all on the bookshelf, but it's just so hard to find the one you're looking for when you're 21 months old and your very nature abhors tidiness.

Our most recent favorite is a book called Turn & Learn Colors. It must be savored at least twice a day - particularly the page with the green items, which are listed in this order: "brochkkk-brochkkk" (broccoli), "pah-pah" (caterpillar), "tah-tor" (dinosaur), and pay-pay (parrot).

We're in that phase where there must be 3-5 new words a day added and I've given up with keeping up.

Needless to say, with her growing love of books, I'd love for her to see me reading more.

The problem with that idea right now is that leaving books out for Daddy and me puts them at risk for major destruction, so if we want to read, we're relegated to our cell phones, our tablets, or our laptops. Which is probably going to make her think that staring at small rectangular objects is THE ultimate entertainment. (She already thinks that, actually; there are more apps on my phone for her than for me!)

But I have managed to have one book out for me lately, exposing it to the elements of toddler sippy cups and frequent "where is it now - oh the laundry basket, oh under the bed, oh in the bathtub." Cheryl Alkon's fabulous book Balancing Pregnancy and Pre-Existing Diabetes: Healthy Mom, Healthy Baby was released a few months after Sweetie's birth. Though I benefitted greatly from Cheryl's experiences through following her blog, Managing the Sweetness Within, I've yet to sit down and read the published book from cover to cover.

Regardless of the fact that portions of it remain untouched, I recommend this book to every woman with diabetes with whom I come into contact. It's a treasure trove of anecdotal evidence about managing fertility concerns, pregnancy, childbirth, and newborns while dealing with your pre-existing diabetes. Not to mention that there are at least two quotes in it from yours truly. :)

Sweetie in Chicago at 20weeks old with Kristin's copy of the book

For this blog challenge, I flipped it open and it fell to the chapter titled "In the Thick of It." Before I read one more word, I thought, "Yes, that's perfect. That's exactly where I am."

I'm in the thick of it, smack-dab (as my mother would say) in the middle of this journey again.

The reason that I didn't get this blog posted until Sunday was almost over is because of that thick.

Because I kept reading, immersing myself in the stories of women managing their insulin resistance in the late second and third trimesters. I read for twenty minutes - in between rocking Sweetie to sleep for a nap and bounding up (after glancing at the clock) to make myself look halfway presentable so that I could teach a voice lesson, attend another student's senior recital (low blood sugar coincided beautifully with reception goodies), stop by the grocery store for our week's shopping, visit a friend just home with her newborn (where I also asked her paramedic hubby to do a quick blood pressure check on me), and come home to prepare dinner, bathe the pizza-sauce covered toddler, coax her to bed, and then be poked repeatedly by my husband to wake up and go post my blog. (Thanks, Hubster.)

It's so thick sometimes that I have trouble enjoying any given moment or pausing to think about how my insulin needs may have changed since yesterday. But those few minutes of reading made me stop to think about my health needs in a different way today. And I put an extra unit on board after Sweetie's bath. I took that moment out to think about what I'd learned.

I hope Sweetie knows how much Mama and Dada learn from books, too.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J.

Tell Me Sweet Little Lies

Today's Prompt: 3 Truths and 1 Lie. Tell us three truths about your condition. Now tell us 1 lie. Do you think we'll be able to tell the difference?

I'm going to take a slightly different take on the prompt today and discuss my health condition in relation to pregnancy. I meet women online everyday who have been told something scary or inaccurate about becoming pregnant with pre-existing diabetes. Their doctors throw around frightening terms like "congenital malformations" and "stillborn." Their mothers tell them they shouldn't "risk it." That's just not the reality for most women and it hasn't been the reality for me. I'd like to set the record straight. Here are my 3 truths and 1 lie.

Women with type 1 diabetes can have perfectly healthy pregnancies with minimal interventions.

A woman with diabetes can need as much as 300-400% of their normal insulin intake per day during pregnancy or as much as a whole unit for every gram of carbohydrate.

Type 1 and gestational diabetes are essentially the same thing during a pregnancy.

The baby's blood sugar is generally about 80% of the value of the mother's during pregnancy and newborns have lower target ranges than adults.

Do you know which one isn't true? Let's take a closer look at each statement.

Women with type 1 diabetes can have perfectly healthy pregnancies with minimal interventions. True! Women with Type 1 all over the world - of every size, shape, race, and age - have perfectly healthy pregnancies everyday. I've been really grateful to have the resources of the Oh! Baby!!! group on TuDiabetes, the Positive Diabetic Pregnancies Yahoo group, and the book Balancing Pregnancy and Pre-Existing Diabetes to see the truth in this. Some women deliver naturally, some have VBACs and VBA2Cs, while others (like me) schedule caesarians. Some women have higher A1cs (7s and 8s), while others keep the recommended range of below 6.5% during pregnancy. Some women have fertility issues, while others don't. Some have children with perfect health, and others don't. Really very similar to the basic concerns and risks of the general population.

This isn't a melodramatic Julia Roberts movie from the 1980s. It's the 21st century. What stands in the way of type 1s having kids (should they want them) is a lot of out-of-date misinformation and fear-mongering - often from their parents, grandparents, physicians, and friends. If you manage your numbers as closely as you can (which most women are incredibly motivated to do during pregnancy), your risks of problems are essentially EQUAL to anyone else's. The scary truth we have to accept is that, yes, sustained poor control (sustained highs, not testing BG, A1c's over 9) in the first trimester can disrupt the development of the baby's spine, brain, and heart during a period when many women might not yet know they are pregnant - which is why women with T1D are encouraged to be in tight control before trying to conceive.

If you manage the first trimester to the best of your ability, your biggest concern as a type 1 is that the baby may put on weight in your final trimester if high BGs continue to fuel too much glucose to the baby. A large baby could have trouble passing through the birth canal and may need to come out early via induction or c-section to avoid birth injuries. And sometimes the condition of a diabetic woman's placenta results in the need for an early delivery. Another reason for tight control is that your glucose passes through the placenta, but your insulin does not (molecules are too large), so the baby's pancreas is sometimes having to take up the slack, which can also cause lows for the baby in the first 12 hrs after birth as the baby's pancreas adjusts to a less "sweet" environment.

Most type 1 pregnancies do include aggressive monitoring from your medical team as a safety precaution against these concerns, with lots of extra ultrasounds (I had 12 with Sweetie) and non-stress tests and visits to measure the baby's weight and organ development, but the end result is peace of mind and the healthiest outcome possible.

I am SICK of people - mainly older family members and older acquaintances - perpetuating myth and fear about my health condition and my family planning choices. I feel constantly on the defense of my choice to have biological children. It's my right and it's my diabetes management. I guarantee I know more about this than you do, so calm down. I am offended that people think my efforts at good health indicate that there were "problems."

A woman with diabetes can need as much as 300-400% of their normal insulin intake per day during pregnancy or as much as a whole unit for every gram of carbohydrate. True! As my perinatalogist told me once, "Your placenta doesn't know you have diabetes. It's just doing its job." And one of its jobs in the last half of the pregnancy (20ish weeks onward) is to produce HPL (human placental lactogen). In a woman without diabetes, this hormone causes insulin resistance in the mother so that plenty of nutrients are siphoned off to the baby in case the mother is malnourished. It's evolutionarily advantageous for our species!

In a woman with diabetes, however, it means that you're pouring insulin in by the buckets to try to counteract the effects of this hormone. Some women need as much as a unit of insulin for every 1, 2, or 3g of carb coming in. With Sweetie, I went from 50u per day pre-pregnancy to over 150u. I'd have meal doses that would exceed the max dosage allowed by the manufacturer of my insulin pump. My insulin to carb ratio was down to 1:3. That means I was taking 5u for a single slice of bread!

It's challenging to avoid highs when your body seems so resistant to staying in range, but it just takes lots of persistent checking and correcting. As my doctor reminded me, "Feed the baby and don't be afraid to take enough insulin to cover it."

I've had people assume that diabetes goes into remission during pregnancy. Ha. More like goes into hyperdrive.

Type 1 and gestational diabetes are essentially the same thing during a pregnancy. False! There are some distinct differences. Notably, Gestational diabetes usually shows up after week 20 (so no concerns about that first trimester development or first trimester lows) and these women generally do not suffer from low blood sugars. They do not suffer the volatility of type 1 blood sugar management. Most never need to take insulin. GD comes on in the last months of pregnancy as a response to those hormonal changes I mentioned above. It's still unknown why it affects some women and not others (and unfortunately many women who develop GD during a pregnancy have an increased risk of developing Type 2 diabetes later in life). Women with GD can often control the insulin resistance with diet, exercise, and sometimes also with insulin. According to my endo, the big difference in how doctors have to treat this condition is that you can aggressively increase their insulin with almost no risk of lows. Their bodies can still self-regulate to a degree.

In a type 1 pregnancy, however, it's a balancing act to keep the standard deviation and range as tight as possible, with the A1c as low as possible, while avoiding the severe lows that we experience doing it all manually (artificially) without a pancreas. While lows do not particularly affect the baby, no fetus needs its host mama to be unconscious or seizing from a debilitating low. In many (but not all) women, excessive lows are extremely common during the first trimester. Others of us - the weirdos - experience insulin resistance from the get-go and enjoy both extremes. Guess which one I am. I don't experience first trimester lows that others talk about, though occasionally I rebound down into the 40s from aggressively treating the highs I see.

Anyway, this distinct difference between pre-existing D and GD has me going round and round with my perinatalogist. He insists that my BG never be over 120. Both my endocrinologist and Dr. Steve Edelman (the well-known endocrinologist affiliated with TCOYD) rolled their eyes at my perinatalogist's suggestion and called it unreasonable when I relayed it to them. My insulin is in my system for 4 hours after I take it. If it peaked so fast that my BG never crossed 120 at the 1 hour post-meal mark, I'd be "on the floor" (as my endo said) at the 3 hour mark.

So if your doctor is treating you the way he or she would treat someone with GD, educate yourself enough that you can be your own advocate (as I do) or find a new doc! My CDE's suggestion is that I just lie to the man and tell him my blood sugar is 100 mg/dL all of the time. I'm seriously debating doing this. Yup, 100. All the time.

The baby's blood sugar is generally about 80% of the value of the mother's during pregnancy and newborns have lower target ranges than an adult. True. Well, according to my perinatalogist. I haven't been able to confirm it in an online source yet. That certainly makes me feel better when I'm over 140 though.

And yes, the normal range for a newborn, though currently debated in some medical circles, is between 40 (or some say 45) and 60. When Sweetie was born, my first question was to ask about her blood glucose level. It was 54 and she was declared perfectly normal. If the blood sugar is lower than that at birth from Baby's pancreas overcompensating for Mommy's high glucose, Baby is generally given glucose water or encouraged to nurse until the BG stabilizes (within first 12hrs of life). From that point on, your diabetes is no longer their body's concern. Unless they swallow one of your test strips, of course.

If you want to have kids, there are many options available to you. Don't discount the old-fashioned way as one of them.


Additional Resources on Pregnancy and Type 1 Diabetes:
JDRF: Type 1 Diabetes and Pregnancy
Diabetic Mommy
Diabetes Forecast Magazine (ADA): A Guide to Pregnancy with Diabetes

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J.

Wordless Wednesday