Ladies and gentlemen, boys and girls… big news.
This is my pregnancy announcement.
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.
Attending In Person
If you can attend in person, you’ll go here: 11 Avenue de Lafayette, Boston, MA after sending an email to: email@example.com
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.
My pregnancy announcement is this:
No. I’m not pregnant. Seriously.
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My pregnancy with diabetes was superseded by my pregnancy with bleeding issues and my pregnancy with travel issues and my pregnancy with miscarriage issues.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.
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.
I 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.
A 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…
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.
- Japanese saying about resilience translated as “Fall down seven. Stand up eight.”
For us, it was fall down five and stand up six.
It was never a question about being parents. We wanted kids. Adored our nieces and nephews and played peek-a-boo in restaurants with grinning toddlers, but we wanted our own. By the time John and I started dating, we were…ahem…mature (that means “old” to teenagers), so we were financially secure, had careers, and knew the time was right to start building a family.
Joslin Clinic rocks for a lot of reasons. One of them is that when I was first diagnosed, I was told that despite what others may have told me, I could have a successful pregnancy. It just took a lot of work. Years later, I was ready to put that to the test. A1C was 5.5 and I felt great. My endo gave his blessing and we were off…
The joy of seeing those two lines for the first time. You never forget it. I started knitting a baby blanket. I collected information about cribs and strollers and cute onesies. I walked on air for days, filled with a happiness that I didn’t think possible. And then the air got sucked out from under me and I plummeted. We miscarried.
I say we, because I wasn’t alone in these feelings or the aftermath. John held me as I wailed and railed at the universe for being unfair. He was the rock to my deluge of tears, holding fast to the belief that it would eventually be all right. We comforted each other and thought that this was a fluke. After all, 1/3 of all pregnancies end in miscarriage. I know a lot about statistics, but this one was hard to swallow. I put the knitting needles and unfinished blanket away.
It wasn’t a fluke. I got pregnant again immediately and this time, the blanket came back out but didn’t shout it from the rooftops like we did previously. Good thing because I lost this pregnancy a few weeks later. My blood sugars were stable. I was in peak physical shape. Why was this happening?
When I don’t have answers, I go to an expert. I was done Googling and reading statistics. We just wanted to have a baby. We shuffled off to our first appointment with a reproductive endocrinologist that my endo worked with and left lightheaded from all the information they gave us and all the blood they took. Invasive tests and karotyping and more lab work brought us no closer to why we weren’t rocking a baby to sleep in our arms. They had no answers for us and that hurt.
The third time we were pregnant, I held my breath. I didn’t want to get my hopes up. John walked on eggshells around me, careful to be supportive and acutely aware of how fragile I was. But I felt better and even made an appointment to see a Registered Dietician to talk about my dietary needs in the first trimester. HCG levels were going up. I took the baby blanket back out and started to believe that it would be OK.
But it wasn’t. The reproductive endo called to tell me that the HCG levels were dropping. It was over.
Like a lonely moon circling a dead planet, John watched from a distance as I crumbled. I wanted peace and solitude and to be alone. What I really wanted was to be pregnant and have my husband cradle my growing belly at night as I slept. I pushed those thoughts away along with him. It wasn’t a happy time.
Wounds heal, but the scars remain, itching to be scratched long after they’re faded. It took us about a year to start trying again. It wasn’t a shock that we got pregnant quickly. That wasn’t ever the problem. We told no one this time, until well after the sobbing phone call I made to John about the bleeding. What can people say to you after your fourth miscarriage? “Sorry.”? They knew it was trite. “Are you thinking of adopting?” We did, but we were also in the process of deciding to move and in our hearts, we still held out hope.
New city. New reproductive specialist. New blood test and a revelation. I had a genetic mutation called homozygous MTHFR C677T, which is a clotting disorder that can cause recurrent miscarriages in the first trimester. I felt… vindicated. We had a reason, and more importantly, an easy fix. Baby aspirin and Lovenox, an anticoagulant injection daily in the last two weeks of my cycle and then if I was pregnant, throughout the pregnancy.
I peed on a stick in the Target bathroom across the street from our rented apartment, then walked home in a daze, silently handing it over to John as if it was hot. This pregnancy caught me by surprise. We hadn’t really been trying and had been out in Las Vegas the week before, where I had been working crazy hours on a tradeshow floor and staying up late late late drinking far too much caffeine. We were in the process of closing on a new house so I was distracted. Apparently very distracted.
I shot the Lovenox. I followed the doctor’s advice. I kept my blood sugars stable. I refused to take the baby blanket out and work on it until the day John said: “You have to have faith.” I wanted to have faith.
Fall down five.
We learned that it wasn’t the MTHFR or my diabetes. It was undetected endometrial polyps that caused the miscarriage. The doctor said that diabetics are prone to polyps like this. Had we known, it could have been prevented. The doctor was gentle and kind when he told us.
I had surgery and buried myself in work. John and I couldn’t talk about it. Wouldn’t talk about it. At least to each other. We both went to therapy and lashed out at little things. We wanted to be parents, but we weren’t. Our spirits were broken for a long time.
I think now that out of the ashes of the failures, a little spark of resilience grew slowly. That like diabetes, you can feel like you’re failing, but you have to keep trying.
We stood up six.
The finished baby blanket is colorful stripes of blues and greens and reds. It’s beautiful.
And so is our daughter.