Don't Kick The Baby! (Kickstarter It!)

If you’ve ever watched South Park, you might remember this:

And I don’t want you to kick the baby, I want you to Kickstarter this baby.

We Need Real Resources for Type 1 Diabetes Pregnancy

Even with one of the top endocrinologists familiar with Type 1s, pumps, and pregnancy, I felt alone in my care. That whole “What to Expect When You’re Expecting” doesn’t discuss the hypos in the first trimester, the fears of high blood glucose, or the psychosocial aspects of a pregnancy that has diabetes in the mix.

Know what I had?  The Medical Management of Pregnancy Complicated by Diabetes by a well-known physician that was geared towards medical professionals and not people with diabetes. (And I bristled at the very title… “Complicated” – yep.) It gave information, but when you are awake at 3am and freaking out, this tiny book just didn’t cut it. I knew very few individuals who had Type 1 and had recently given birth (In fact, I knew one.) and longed for real resources.

Enter The Solution

I’ve said before that I’m not the person to turn to for information about Type 1 diabetes and pregnancy, as my pregnancy was not about my diabetes. But I know plenty of women now who have shared their experiences and insight since The Kid was born, and I’m thrilled that one of them (Who also happens to be a dear friend with an adorable baby, Lucy!) is providing a solution for a patient-focused real resource.

Ginger Vieira.

Along with Jenny Smith<CDE, RD (who is also a PWD!), they’ve created: Pregnancy with Type 1 Diabetes: Your Month-to-Month Guide – and there’s a problem.

No publisher will touch it, because the market is too small. That means those of us Type 1s who want to have healthy pregnancies are not worth publishing for, because we don’t make up a profitable segment of the population. So, Ginger and Jenny have gone out to the community to help get this book published through Kickstarter.

Why? Because all women with Type 1 diabetes deserve to have real world resources to help them get through one of the most rewarding (and management intensive) times of their lives. This is one of them.

Ginger was kind enough to share this video with my readers (It has Lucy in it!) why this is important and how you can support the work they’ve done.

 

What’s better than Lucy?

That’s a trick question. Nothing. But if there was, it would be an excerpt from their book, which is what Ginger has graciously offered to you as an exclusive to this blog.! Take a read, then head to Kickstarter and give what you can… and share this within our community.

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EXCLUSIVE FROM PREGNANCY WITH TYPE 1 DIABETES

(THANK YOU GINGER AND JENNY FOR GIVING US A SNEAK PEEK!)

Preparing for Pregnancy: Part 3

New Standards for High & Low Blood Sugars

 

There’s been a longtime assumption that anyone with an A1C in the 5s or low 6s must be experiencing a tremendous number of low blood sugars every day or every week, but the truth is that that is not an essential ingredient to achieving an A1C at or near non-diabetic levels.

What it really comes down to is different goals, different standards for the day, different ways of dosing insulin, of choosing what to eat, when to take insulin and how much longer after that before eating…it’s a variety of habits that lead to an A1C in the 5s or low 6s. Those habits require a tremendous amount of practice, discipline, and always being open to learning and making adjustments.

If you are aiming for an A1C in the 5s and low 6s and you’re constantly experiencing low blood sugars then that is a sign that you’re due for a little help and fine-tuning on how you’re approaching your diabetes management. Frequent hypoglycemia is not an essential part of achieving a low A1C.

This entire book is designed to help you achieve a low A1C without experiencing frequent hypoglycemia! It’s all about blood sugar management, fine-tuning your insulin doses, and learning as much as possible about diabetes management during pregnancy and everyday regular life!

Okay, now that we’ve gotten that part out of the way, let’s talk about the A1C you’re aiming for and the blood sugar goals you’ve set for yourself.

What do you currently consider a “high” blood sugar?

We’re going to keep this straight-forward, cutting right to the chase: if you’re trying to achieve an A1C of 6.0 but your blood sugar between meals and during most of the day is usually sitting around 150 mg/dL or higher, you’ll be as likely to reach an A1C of 6.0 as someone driving north when they’re trying to get to Florida. It just doesn’t make any sense. Your target blood sugar ranges and your A1C goals don’t match.

What do you do when you see a blood sugar of 150 mg/dL on your glucose meter two hours after eating? Do you take a correction dose of insulin or do you say, “Eh, that’s fine”?

Take a look at the following A1C translation chart from the American Diabetes Association explaining what the average blood sugar level and overall range is for each A1C result:

  • 12% = 298 mg/dL (240 – 347)
  • 11% = 269 mg/dL (217 – 314)
  • 10% = 240 mg/dL (193 – 282)
  • 9% = 212 mg/dL (170 –249)
  • 8% = 183 mg/dL (147 – 217)
  • 7% = 154 mg/dL (123 – 185)
  • 6% = 126 mg/dL (100 – 152)
  • 5% = 97 mg/dL (70 – 125)

What is your A1C right now? If you’re at 7.5 percent and you’re extremely frustrated, ask yourself, “How often is my blood sugar sitting around 150 mg/dL?”

Now, where do you want your A1C to be either prior to pregnancy or during?

Take a look at what your goal A1C translates to as an average blood sugar and blood sugar range.

For example, an A1C of 6.0 percent: That means your blood sugar is rarely over 150 mg/dL, and very often sitting around 120 mg/dL. That 30-point difference matters. If you’ve been telling yourself that a 150 mg/dL isn’t a big deal and isn’t much different than a blood sugar of 120 mg/dL, then you now know exactly why your A1C hasn’t budged from 7.5 percent.

Want to get your A1C in the 5s? That means you’re aiming for non-diabetic blood sugar levels. It means you’re spending the entire night near 90 mg/dL. You’re waking up near 90 mg/dL. (Why consider the overnight? That 8 hour window of time that you are hanging out at a value, weights about 33% into what your A1C value is going to look like).  An A1C in the 5s means You are pre-bolusing your insulin before meals so that your blood sugar does not rise too much past 130 to 140 mg/dL for very long, or very often. It means when you correct a low blood sugar, you only consume enough carbs to bring yourself back up to 90 mg/dL rather than 130 mg/dL. It means when you see a blood sugar level sitting steadily at 140 mg/dL, you take a tiny correction dose of insulin to bring it down to 90 mg/dL.

An A1C in the 5s means you’re always aiming for non-diabetic blood sugar levels, but that doesn’t necessarily mean that’s where you should aim.

Non-diabetic blood sugars?! That’s crazy!

We know, it sounds crazy! But here’s the thing: you don’t have to do it perfectly. (And frankly, you don’t have to do it all–that’s a personal decision that you’re going to make for yourself. It can’t be made for you!)

Instead of perfection, it’s just the aim. The target.

Instead of telling yourself that it’s impossible to manage your blood sugars that tightly, you’re telling yourself that you can do the very best that you can do to achieve the tightest blood sugar levels that you personally can achieve for the sake of both your health and your baby.

You don’t have to be perfect. You don’t have to get your A1C in the 5s. It’s okay if you never see your A1C in the 5s while you’re pregnant–but the intent is what matters. The intent and the belief in your ability to do the best you can do is what’s going to help you achieve blood sugar levels you’ve never thought you could achieve. Learning how to manage your diabetes is a non-stop, life-long learning process and if you believe in your ability to learn and improve, you could learn more about diabetes management during your pregnancy than you even realized there was to learn!

You just have to believe in your ability. Not the ability to be perfect, but the ability to improve, to achieve things you’ve possibly never achieved. That is all.

(And if you have a healthcare team that doesn’t understand the aspect of “perfect blood sugars during pregnancy isn’t possible” thing…you show them this chapter and you tell them what’s up!)

And it’s really about creating your own personal standards and goals.


For all of us that didn’t have this resource when we were going through our own pregnancies with Type 1 diabetes (not COMPLICATED BY DIABETES), don’t you wish we had this? That’s why I’m sharing this and asking for your help with their project, because I know that it’s not about being a profitable market… we are not a “market” – we are women who want healthy pregnancies and real-world resources.

My Pregnancy Announcement

Ladies and gentlemen, boys and girls… big news.

This is my pregnancy announcement.

Surprised?

You shouldn’t be.

Women with T1 diabetes can have healthy babies. Healthy pregnancies. It can happen.

If you are a T1 family (of one or more, seeing as how I feel having a baby as a T1 involves more than just yourself…), join Glu on September 28th from 5:30 – 8:00pm.

 

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Attending In Person

If you can attend in person, you’ll go here: 11 Avenue de Lafayette, Boston, MA after sending an email to: gluevents@myglu.org

Attending Virtually

They will be broadcasting it live through a super cool feature called blab.im. Register at the email above to get the details.

Want to get your questions answered?

Here is the link where you can submit questions up to a few hours before the event starts. https://blab.im/glu-t1d-exchange-type1-diabetes-and-pregnancy

I’m proof that T1s can have successful pregnancies and have amazing babies. There is so much bad information out there, so let’s change that. 

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The Kid thinks this post is funny, because she is definitely going to be an only child (and she likes it that way.)

My pregnancy announcement is this:

No. I’m not pregnant. Seriously. 

My Pregnancy With Diabetes

IMG_0885It wasn’t about my diabetes.

There are some amazing women who have shared their journey through pregnancy with Type 1 diabetes, and if you’re looking for insight and information, I’d encourage you to read Kerri’s blog, Six Until Me or Kim’s blog, Texting My Pancreas. Not here.

In my best Jedi voice, I say to you: “This is not the diabetes pregnancy blog you are looking for.”

I’ve had ample time to mull it over and truth is, my focus wasn’t about having every single blood sugar in range and an A1C of 5.5 % (which it wasn’t, but I’m not feeling any guilt over that). Diabetes accompanied me through my pregnancy, but it wasn’t all consuming. Please don’t misinterpret that to mean that I didn’t care about it, but diabetes was just one part of a very big picture.

My pregnancy with diabetes was superseded by my pregnancy with bleeding issues and my pregnancy with travel issues and my pregnancy with miscarriage issues. The diabetes just became a part of the big ball that I began to smuggle under my shirt.

As I had mentioned in a previous post, there were problems with maintaining pregnancies, so every precaution was taken to remove any possible negative factors. I followed my medical team’s instructions to the letter and was diligent checking my blood glucose levels to keep them as normal as I could. While it was never blamed in the past, I didn’t want my diabetes to be the reason for another failure.

It wasn’t about my diabetes.

I traveled quite often before my pregnancy and thought it wouldn’t be an issue. After my third flight in a month during the early days, I began to bleed while touring a facility – and it was a two hour flight away from my doctor’s office. I was their first appointment of the next morning and fully expected to be told by the sonographer that there was no heartbeat; in fact, I told her as much. I explained my past miscarriages and had already resigned myself to yet another notch on that horrible belt. She took her time and looked up from the monitor, quiet and composed, then turned a dial so that we could listen to the thump-thump-thump of The Kid’s heartbeat.

IMG_0890I couldn’t speak. I couldn’t breathe. And then once I could, I couldn’t stop crying. And then she started crying. My doctor later joked that both the sonographer and I were in shock.

The next trip a few weeks later? Same thing, except a colleague covered for me while I spent hours in a New York City ER waiting to see if I had miscarried. I hadn’t, but arrived back home with a diagnosis of a subchorionic hemorrhage. The diagnosis did increase a chance of miscarriage, but it was nothing I had done and nothing I could do – except stop traveling by air for my family’s peace of mind.

“I can’t fly to our national conference,” I told my CEO, sitting in my bulky way-too-big sweater that covered a seventeen week bump. (At that point, he told me later, he just thought I had gained weight and was embarrassed about it.) “I’m pregnant with a baby girl and I can’t travel by air. I’ll be driving.” And I did. (Well, actually I was a passenger most of the time of a two-day, seventeen hours in the car road trip from Atlanta to San Antonio.)

Driving was a wise choice for two reasons:

  • I was only one of three staff that was on site when a massive snow storm that shut down half the country hit. My staff (and most of the company) arrived the night before the conference rather than two days before. I was a heroine, except that one night. (Which night, you ask?)
  • I spent a night in the hospital (Yep. I know.) due to a 24 hour puke fest that was going around. Having a car got us to the hospital I chose and not the one an ambulance would have taken me.

It wasn’t about my diabetes.

I will say that my endocrinologist appointments were not what I had expected. I was under the care of “one of the top endos in the country” and he is – when you can see him, which, for me, was almost impossible. I met with his staff of CDE’s throughout my pregnancy, tweaking basals and increasing mealtime boluses. I asked repeatedly to see the actual endo, but twice my appointment was moved to a CDE and once it was canceled due to him presenting at an overseas conference.

IMG_0960I was in my almost eighth month of pregnancy when I finally faced him. I waited in an exam room until 6:15 in the evening (for a 5pm appointment) and when he breezed in, apologizing, he looked at my chart then exclaimed: “Your fasting blood sugars are much too high! Who has been taking care of you?”

“Your staff for the last eight months.”

Let’s just say that he realized that he had said the completely wrong thing. He quickly made some changes to my pump settings, signed off on the delivery protocol and with that, he was off. I never saw him again.

It wasn’t about my diabetes.

My OB and my perinatologist were phenomenal. My blood pressure stayed normal. My A1Cs weren’t bad. (No, they weren’t 5.5%, but I didn’t have an endo who cared about that…obviously.) We watched her grow and kick her legs and arms. All her pieces and parts were gorgeous and her weight was normal. Due to the multiple high-risk nature of my pregnancy, we chose to schedule a C-section for safety. Nursery was done, tiny diapers purchased, and we thought it was smooth sailing for the rest of the pregnancy. Pride goeth before the fall…

It wasn’t about my diabetes.

She was born at 34 weeks, 6 days. Smooth sailing went out the window when my water broke late one evening. We believe that there just wasn’t any more room. I was a Weeble.

Looking back, I knew something was going on that day. My blood sugars were normal… far too normal. The fetal non-stress test the day before had shown that I was dehydrated (I passed, but only after I drank a liter of water during the test.) and I was clumsy and exhausted. As I lay down to sleep that evening, for the first time during my pregnancy (and pre-conception), I decided to not take my daily subcutaneous anti-coagulant injection before bed. “I’ll take it in the morning.” Lucky us. Saved me from major issues with anesthesia…

I knew upon arrival that my pump would be taken off and an IV insulin drip administered. (My admitting blood sugar was higher than what the endo indicated for continuous pump use and I was more concerned with the prematurity factor than fighting to keep my pump on.)  She spent her last night in my womb playing hide and seek with the fetal heart monitor, so the nurses had me in a Mongolian contortionist position to keep her in one place. We spent a few restless hours in a labor and delivery room, trying to sleep. We didn’t sleep, whispering excitedly to each other about our last night as “just the two of us”. Diabetes wasn’t part of our conversation.

It wasn’t about my diabetes.

A sweeter sound I have never heard, that first throaty cry from her lips. She was healthy. Hearty. Due to her early arrival, she spent her first two days in the NICU, where the nurses fought to hold her. (She was the only child in the NICU at the time that was in a regular bassinet, rather than an incubator.) Her next two days were in an intermediate care nursery (again, due to the prematurity rather than her state of health) and then… we all went home.

It wasn’t about my diabetes. 

It was about her.

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DAM: Diabetes & Blood Sugar Levels

1154350_32525829A blood sugar or blood glucose level is the number that often gets spouted off by a person with diabetes (or a family member or a medical professional), telling the world how much sugar is rolling around in their body. (It doesn’t really roll so much as swim. Backstroke or doggy paddle? Have no idea.)

For those of you whose beta cells didn’t take early retirement, your blood sugar levels consistently stay between 70 and 130 mg/dl. Doesn’t matter how much you eat, don’t eat, run a marathon, or watch TV all day. Your body does what it’s supposed to do – regulate your blood sugar levels so your body and your brain have the right balance of glucose in your system so you live.

Not quite so easy for those with diabetes. We have to do a little a lot a huge stupidly gargantuan amounts of work to keep our blood glucose levels within a range that is doable.

Let me start off my explanation of blood sugar levels by channeling one of my favorite people, Bennett Dunlap:

“Your Diabetes May Vary.”

Every person with diabetes has their own version of what their optimum blood glucose level range is – and that’s between the PWD (person with diabetes) and their medical team. The various experts have interesting ideas on what should be the right range:

The American Diabetes Association says:

  • Prepranidal (which is a fancy word for before eating a meal) blood glucose: 70-130 mg/dl
  • 1 to 2 hours postprandial (again, fancy word for after beginning a meal) blood glucose: less than 180 mg/dl
  • A1C: Less than 7%

Joslin Diabetes Clinic gets a little more detailed:

  • Fasting blood glucose: less than 100 mg/dl
  • Preprandial blood glucose: less than 110 mg/dl
  • 2 hours postprandial blood glucose: less than 140 mg/dl
  • Bedtime blood glucose: less than 120 mg/dl
  • A1C: Less than 6%

* Note that Joslin says at the bottom of the page that this comes from information obtained from Joslin Diabetes Center’s Guidelines for Pharmacological Management of Type 2 Diabetes.

But wait… it gets more confusing. If you read their Clinical Guidelines for Adults with Diabetes (updated 2/2013), it says this:

  • Fasting blood glucose: 70 to 130 mg/dl
  • 2 hours postprandial blood glucose: less than or equal to 180 mg/dl
  • Bedtime blood glucose: 90 to 150 mg/dl

Then there is the Pre-Existing Diabetes with Pregnancy Clinical Guidelines (updated 6/2011):

  • Fasting and premeal glucose: 60 – 99 mg/dl
  • 1 hour postprandial blood glucose: 100 – 129 mg/dl

These ranges also change for older individuals with Type 1 diabetes, young children with Type 1 diabetes, PWDs who have complications, etc.

The end goal for a person with diabetes is to die happily at a ripe old age with as few complications as possible. Sort of the opposite of: “The person who dies with the most toys, wins.” Having a target blood glucose range is a start, but there’s so much more than just checking blood glucose levels – once you have the number, you need to know what to do with it. I’ll be sharing my thoughts on that in the next few days…

 

 

It's Not That Hard…

She twists a strand of reddish hair that has fallen free from her ponytail while she listens to a message on her phone, then sighs and puts it back in her purse.

It’s a new group of moms. The kids are running amok in the small splash park and climbing precariously over small stone lions that silently watch over sparkling jets of water. It’s sunny. Joyful. But I am out of my element, because I don’t know these women well.

I miss my “mom friends” from our old city. I know them, have watched our children grow together, and become a better mom because of their collective wisdom. They are the only part of our old life that I regret leaving behind. If I could have swept them all up in a bag, slung them over my shoulder, and carried them with me here, I would have. (It would have been a heavy bag.)

While I am gregarious (sometimes to a fault) and have parlayed a career out of talking, I still get that nervous swirl in the pit of my stomach meeting people. It’s natural, right? Right. But that flutter has been a maelstrom lately, because the stakes are higher. I want them to like me, so that my daughter will have play mates. So, I try all the harder to fit in.

The woman sitting next to me turns and shares the reason behind her sigh. “I had a glucose tolerance test last week.” She absent-mindedly rubs her growing belly. I remember that clockwise sweep around my belly button, feeling The Kid roll and swim inside me. I am suddenly struck with jealousy pangs.

“They called me to tell me that my results are normal, but they just left me another message. I’m worried that they were wrong and that I actually have gestational diabetes. I don’t know how I would do it.” A few of the other women nod in agreement. My throat constricts.

My voice is muted, but still audible when I say: “You’d be fine. It’s not that hard.” I point to my pump and my CGM. There is a brief discussion about my diabetes and how long I’ve had it, then the gaggle of children rush towards us for the promise of goldfish crackers and chips.

I lied, but they won’t know it.

It is hard.

Every blood sugar out of range and the guilt that accompanies it.

Every comment made by strangers who do not understand.

Every judgement made by nurses and doctors and people you are supposed to trust.

Every thought of how easy it could be if you weren’t diagnosed with diabetes.

Every moment you wish for ten more children just like the single one you have because she is so incredible, but you know better.

I try to be an advocate for diabetes awareness, but some times, I wish I could just absent-mindedly rub my growing belly, complaining about a glucose tolerance test, while watching my daughter flit in and out of the water spray.

Today was one of those times.

 

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