Thursday, February 14, 2013

What do you mean, "High Risk"?

It's a common question among the bold and a silent glance often held by the timid;

"How exactly is a high risk pregnancy any 
different from any other pregnancy?" 

For one thing, you get used to this.

There are various answers. The various risks are similar to stars - too vast to count. I know what my risks are. I am familiar with the risks of some of my friends and the members of the high risk message boards I frequent online. This does not mean that I can define what risk your friend is referring to when they say their pregnancy is high risk. I can only elaborate on what it means to me.

I was high risk before my son was conceived. After my second daughter was born, I was told that I could not survive another pregnancy. I had come close to a catastrophic uterine rupture and with more scar tissue there would be an even higher chance that future pregnancies would end in my death.

Several years later, in 2009, I had lost a significant amount of weight (around 80 lbs) through diet and exercise and I wanted to have my excess skin removed. I had a Reverse T Abdominoplasty. 4 days later, my husband brought me into the E.R. By the time we arrived, my oxygen saturation was at 10% and falling. Three blood clots were found in my lungs. The medical term: Triple Pulmonary Embolism. Not something many people survive. My recovery took 13 months. This signaled another round of "You cannot survive another pregnancy" discussions with physicians.

My body went through some kind of healing anomaly in Spring of 2011. I can't explain it fully and I can't replicate it. I do know this: After March 2011, the same doctors that had been telling me I could never have another baby started telling me that I could have another child. I saw a specialist and went through a gauntlet of tests. The specialist agreed that I could have another baby.

Several miscarriages and failed fertility treatments dotted the latter half of 2011 and the first half of 2012. Each failure raised the risk for any future pregnancies. When I did conceive, my ultrasound confirmed there was an embryo - and four uterine cysts. If the cysts did not clear on their own, they would have to be surgically removed as soon as I made it to the second trimester. Luckily, the cysts dissolved and surgery was avoided.

Additionally, once my pregnancy was confirmed, so was a mutation in my blood. This mutation is what led to the triple pulmonary embolism in 2009. In order for myself and my baby to survive this pregnancy, at home injections of blood thinners would be needed daily. 

In September 2012, my morning sickness should have started to fade. It didn't. It was determined that while I clearly had Hyperemesis Gravidarum, there was no point in making a note of it because it would not change my treatment in any way. I ended up in the emergency room again where it was found that not only was I dangerously dehydrated, but that I am allergic to Zofran - the most prescribed anti-nausea drug for pregnant women. I would have to manage this extreme dehydration with sports drinks and bed rest.

Despite all of this, fate decided that I needed to be able to understand how much more risky things could get. In January 2013, I spent almost every weekend in the OB/ER. First: Chest pain. Never explained. Second: Car accident. Third: RSV. Fourth: Complications from RSV. I was also diagnosed with Gestational Diabetes.

February came along and I gratefully bid farewell to January. We started the month with a beautiful Open House (Baby Shower). The following week I went into latent labor. As of this moment, I've been having consistent contractions for a little over 10 days. Though these contractions won't stop, they are not advancing my body toward delivery. Basically, I get to tough it out for as long as possible.


Daily Life in a High Risk Pregnancy


Step 1: Take a fasting blood sugar with the monitor seen above. I get up and go to the bathroom, making sure to clean my hands very well. If there's something on my skin when I draw the blood for the meter, it can mess up the results. This is the first part of my day that could lead to an unplanned visit to the hospital. If any one of my daily readings is extremely high or low, I know I'll have to go up to the hospital so they can straighten things out. Assuming that my numbers are okay, I move on to Step 2


Step 2: Heparin injection. I sit up in bed, make sure I've got enough light to read the markings along the side of a syringe, and prep my space. I take out a small glass vial of Heparin, an alcohol swab, and an insulin syringe. I use the alcohol swab to sterilize the top of the Heparin vial and then to clean my hip where the injection will go. I draw 75 cc of air into the syringe and inject that into the Heparin vial. I then draw up 75 cc of Heparin into the syringe. I carefully place the vial back on the bookshelf beside my bed and I find the newly sterilized, relatively unbruised area on my hip. I take a small breath in and exhale as I inject myself with the needle. I count to 15 as I depress the plunger so that I don't do the whole thing too fast. The photo above has been edited slightly so you don't have to see my surgical scars or the many, many bruises caused by twice daily injections of Heparin. I remove the syringe and carefully add it to the thick plastic Sharps container next to my bed.


Step 3: Morning Medications. Using my blood sugar reading as a guide, I figure out what to eat for breakfast. With breakfast, I take a prenatal vitamin and my gestational diabetes medication, Metformin. I do not require insulin, but Metformin has become a part of my morning and evening meals. If I'm having a particularly painful morning, some Tylenol or prescription pain medication may be taken along with the other medicines. I mark the time for a couple of reasons: It's good to know when I've taken my medicine and I'll need to check my blood sugar again in two hours.


Step 4: Take Blood Sugar again 2 hours after breakfast. See Step 1.


Step 5: Lunch. Having gestational diabetes means that I have to consider how many carbs are in my meals. I also need to make certain that I'm pairing my carbohydrates with protein. When I finish this meal, I need to note the time again. That's right; in two hours, I'll be checking my blood sugar again.


Step 6: Take Blood Sugar again 2 hours after lunch. See Step 1. Again.


Step 7: Dinner. See Step 5: Lunch. It's pretty similar, except that this will be my evening meal, so I must also add two Metformin. I try to time dinner to happen around 6:30 or 7 pm.



Step 8: Blood Sugar and Heparin. This is why I try to time dinner. It's a tiny bit more convenient to sit down and do both my Heparin injection (which must be done 12 hours after the morning injection) at the same time as my last blood sugar test for the day (which must be done 2 hours after consuming dinner and my Metformin). 


These 8 steps do not change from day to day. They must be consistent. The Metformin and blood sugar testing didn't have to be added until my third trimester, but the Heparin has been part of my routine since my pregnancy was confirmed.

I must remember to call in my refills for medicines and supplies to the pharmacy early enough (generally about a week before I need them) so that they have a chance to get them in stock. If I have to leave town or be away from home for even the shortest amount of time, it means I will be bringing all the necessary medicines, needles, and other supplies in order to continue this care. Abraham and I ran a couple of events at Anime Banzai this past fall. None of our participants realized that before I entered the first event, I had discreetly given myself an injection in my hotel room. Abe and I wanted to have a "babymoon" in December. We were only gone overnight, but I had to do 3 injections while we were away. Furthermore, we couldn't travel more than a very short distance because I couldn't go too far from the specialty hospital where my son will be born.

Some days include additional steps. On Tuesdays and Fridays, I have non-stress tests. Between steps 3 and 4, I add "Go to Hospital and be monitored for up to an hour" and "try very hard not to throw up breakfast while in the car". Almost every Tuesday includes a visit with my high risk OB/GYN, too. Some of those Tuesday include follow up ultrasounds.

Other things not included in the list above: Having a life outside of pregnancy. I still have my 2 dogs, my 2 daughters, my husband, and my extended circle of friends and family. I don't simply pretend that nothing else exists. If I have to go grocery shopping or to the pharmacy, I have to plan that out and make sure that I can do it safely. How many people have to consider a trip to the grocery store as a "risk"? With my blood as thin as it is, I must be careful that nobody bumps a cart into me by mistake. When I'm out in a crowd, I have to watch out for peoples' elbows and purses. A decent bump could cause internal bleeding and yet another hospital visit. I have to remember that I cannot sample that chocolate treat while shopping - I have gestational diabetes. I also must do my best to make sure that the stress of these added risks does not cause further risk or damage. I nap daily - but not by choice. Living this life is exhausting.

It's been said that being pregnant, building a baby, is like having your body run a marathon every day that nobody else ever sees. If that's true, then a high risk pregnancy is kind of like running that daily marathon while trying to keep the pavement from falling out from under your feet. Nonetheless, those of us slated to have such risks generally choose optimism. My son is a miracle that I do not (and cannot) take for granted. I remember being asked by a friend early on in this pregnancy if I would be having an amniocentesis. Without hesitation, I replied that I would not. My friend's eyes opened wide and she came back with, "But with being so high risk... what if the baby has Downs or something like that?" My mind and heart remained where they have been throughout my fertility and pregnancy experience; "If my baby is born with Downs Syndrome or any other genetic disorder, I will thank God every morning that my child was born at all. I will be grateful every day that this baby wakes up with a beating heart." I meant it then and it holds true now. Every kick, every wiggle - I find it a miracle. Sometimes miracles are painful. Sometimes they're hard. That doesn't change the fact that they are miracles.

My high risk pregnancy is still a pregnancy. It's still a miracle. It's my opportunity to bring my son into the world. It is harder than other pregnancies and I do find that I'm often misunderstood, but all in all, it's worth every moment.

"You're worth the trouble 
and you're worth the pain. 
You're worth the worry.
I would do the same 
if we all went back to another time. 
I would love you over. 
I would love you over. 
I would love you." 

- from "Like Dylan in the Movies"
by Belle & Sebastian


4 comments:

  1. Wow! Thank you so much for sharing about all of your trials. I think a lot of people have gone through slivers of what you have here and there. But the whole enchilada is quite a lot. I am sending you postive thoughts and only the best wishes! Stay strong Mama!!!

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  2. Thanks, Karen. I started thinking about how frustrated I can get when people think I just don't want to go out and see them or do things. I realized this happens to a lot of women and thought I would try to give them some of my words to explain. I've just got to hold out a couple more weeks... It will all be worth it. Plus, now things like cloth diapering should seem pretty easy by comparison!

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  3. It's so important for women to know they're not alone. I hope someone can find this post and realize that someone else has been there! So sorry for all you had to go through. I love your attitude about it though: It's still your opportunity to bring your child into the world. <3

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  4. Thank you, Jennifer. I'm hoping that those who need it will find it, too.

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