Giving Thanks

Posted on November 23, 2010 by ledwards

This is the time of year when gratitude posts are appropriate. From the evolution of to recognizing the support systems in my life, I have never lacked things to be grateful about./

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite. Do

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

Finding the New Normal

Posted on November 14, 2010 by ledwards

It’s about time I got back into a blogging groove, no?

My daughter is eight weeks old today. She is a smiling, happy, strong little baby who started laughing out loud recently, charmed by the beguiling fishes hanging on her bouncy chair.

The past eights weeks have blurred together into chunks of time: the first few days, where we switched gears from high-risk pregnancy and complicated birth to being parents and getting to know our little girl, and attending to her medical needs. Then there were a few weeks where we adjusted to some feeding problems and started learning more and more from her and about her.

The past few weeks, we’ve had so much fun watching her grow more alert, smile at us, reach for things, and start to imitate us. And we’re taking longer, deeper breaths: she is doing well and minor health issues are improving; she is a good sleeper and great about letting us know what she needs; without forcing it, we all seem to have fallen into some semblance of routine.

It seems like each week presents a new normal, a realignment of expectations and possibilities. Now, I find myself negotiating the whole back-to-work scene (expect a full post on these issues later). Right now it is part-time, but maternity leave came and went too quickly. My expectations for what I can get done and how much I can extend myself change by the hour, but I am learning to roll with that. (Hey, a lifetime of illness getting in the way of work was good practice for this!)

Before I was pregnant with her, we talked a lot on this blog about parenting and chronic illness, and one fear so many people shared with me was what to do on the days when we are not able to care for ourselves, let alone infants/children. The discussion in the comments thread revealed that it takes a village. This is true for any family with a new baby, but so incredibly important for parents with chronic illness.

And I’ve had practice negotiating that change, too—being acutely sick with a newborn. Now, I had a few things working for me: I was sick, but not very sick (for me)—I knew things wouldn’t deteriorate enough to send me to the hospital, and the whole thing only lasted two weeks. Also, thus far, our baby has a really easy temperament: she rarely fusses (and if so, with good reason); she sleeps well, for an infant; and she is very adaptable. But for a variety of reasons, there was no one to help me.

So we took it one moment, one hour, one feeding at a time, until we’d made it through the end of another day. She did not get walks or much fresh air that week, she did not get the very best version of me as a mother, but she did get my very best each day.

There are a lot of acute illnesses and medical calamities going on with people close to me right now. The details are not mine to share but they speak to another adjustment—balancing being a new mother and putting my daughter’s needs first with helping with the emotional and physical needs of others. A lot of the time I feel pulled in many different directions, and just at a time when I have a young baby who needs me there are lots of other demands, too.

In the end, the same principles that make so much sense with chronic illness apply—with work, with care giving, with new roles and expectations, we take it day by day, and know that today’s normal might not work tomorrow. And with a happy, healthy baby, we have few complaints.

Letting Go

Posted on October 22, 2010 by ledwards

I’ve thought a lot about filters lately.

How to sort out stories that are not ours but fill up so many spaces in our lives.

How to separate necessity from what is superfluous.

Here on this blog, how to incorporate the life-changing event of our daughter’s birth while keeping up a blog dedicated primarily to chronic illness.

How to discuss parenting and chronic illness while still maintaining my daughter’s privacy.

Today, at least, the thread that connects some of this is natural.

This week, I returned the digital scale we had to rent for a few weeks to carefully monitor the baby’s weight. Without getting bogged down in the details of jaundice and breastfeeding, I’ll say that it is not easy to get a sick, sleepy baby to eat. If a baby does not eat, she will not recover and a vicious cycle emerges. In our case, said cycle resulted in weight loss, many blood draws, pediatrician visits, lactation consults, hospital-grade equipment, etc.

She is now five weeks old (!) and steadily gaining weight, and is otherwise healthy and thriving.

I had the option to keep the scale another week, and I was tempted. So, so tempted.

In my world, data is king. After such a long, difficult, and medically intensive pregnancy, I am wired for data. By necessity, I never went more than a week or two at the most without an appointment or ultrasound. Biophysical profiles and their various indices were part of my twice-weekly language, and I carried spare sets of fetal monitor belts with me to the hospital for all the non-stress tests.

We pored over amniotic fluid levels, weight estimates, placental blood flow readings, and dutifully logged my own blood pressure and oxygen readings since they so closely correlated with her well-being.

When I commented to someone I needed some kind of scrapbook or binder for all her ultrasound pictures, I got a strange look. Moments like that remind me that our journey to have a child was not the norm. But the dozens of pictures that mark our journey are precious to me, now even more since I know the little person who rests her head on her arm or falls asleep with a hand across her face, just as she did then.

But it is time to take ultrasound pictures off of the fridge and out of the dingy white folder I lugged to each appointment. It is time instead to do something with all the pictures I’ve developed of her first few weeks.

And that’s how I feel about the scale. For a time, the constant stream of data was helpful and necessary. She needed to gain weight, and we needed to know if our various strategies were working. But she is over that particular hump now, and I need to learn to let go and trust her body and my body to get her what she needs. I need to rely on what is here and now, and not cling to numbers to tell me what I can see for myself.

It’s a big shift, after so many months of living on a precipice and waiting. But I think it’s a shift we all struggle with to an extent. So many of our conditions warrant close monitoring and frequent tests and streams of information we use to make decisions about treatments, drug dosages, lifestyle choices, etc. We need the data to make informed decisions, but data itself is not everything.

So I left the scale at the office. And in the few days that have lapsed, we have done just fine, she and I. I don’t know exactly what she weighs, but I don’t need to anymore. Besides, most parents don’t know this day to day. Instead, I’ll wait for her to grow into her 0-3 month clothes better, and I will smile when she hungrily, noisily eats, pleased that she is well enough now to wake up on her own to eat.

Things are headed to normal, and while I am not used to that, I am so grateful for it. In so many ways, data got us here, but now our job is to let go and live.

Dispatches from the Other Side

Posted on October 8, 2010 by ledwards

In the Moment…

My daughter has her father’s chin and his nose, and it looks like she will have his big, bright blue eyes, too.

She also has his lungs, not mine, and I’m hopeful her immune and autoimmune systems will follow suit.

She has jaundice and some related feeding issues but compared to what we thought we’d have to worry about if she came when I was hospitalized at 28 and 32 weeks and when I went into labor at 34 weeks, these issues are definitely not major ones. It is all relative.

She only spent one night in the NICU and overall she is doing fantastic—she is a happy, calm, easygoing baby who grows more alert and active by the day, who has hilarious facial expressions and endearing little sounds and motions.

(And she is ours! There are times when it still does not feel real, this thing that happens for other people that amazingly, has happened for us, too.)

She is an absolute joy.

Pregnancy and Chronic Illness….
I consider the opportunity to carry her the great privilege of my life.

In many respects, I loved being pregnant: I loved feeling her squirm. I loved rubbing my hand on my stomach and feeling her kick in response. I loved knowing her movements and her patterns so intimately. But I cannot express the profound relief I have in not being pregnant anymore.

I see even more clearly now how tenuous the tightrope I walked on was, and just how difficult things were, especially toward the end. I should say that until the third trimester, and ignoring the bed rest/blood pressure situation and the preterm labor, things with my lungs could have been much worse, and we continue to be grateful for that.

Now, about the labor and delivery. We fought so hard for each day she remained on the inside, especially the last few weeks, but we’d reached the point where my body couldn’t give anymore. We were 37 weeks, and had gotten further than anyone expected, especially after all the hospitalizations the preceding few weeks. I staggered into my doctor’s office, hardly able to breathe. My blood pressure was creeping up higher and higher, and in the day since my last visit, I’d gained several pounds of fluid. Things were deteriorating rapidly.

We were sent upstairs, to the floor and staff we knew so well by now, and nurses and residents cheered us on, excited we were being admitted and this time, it was to actually have a baby.

Naively, we hoped that since I’d had painful contractions for a solid month, the induction would move along. I had strong, pitocin-induced contractions every two minutes for 24 hours before I got an epidural, and that time included a mechanical dilation that failed to progress things much and many other interventions. When the internal fetal monitor showed the baby was in distress, the epidural went in and we almost had an emergency c-section. They cranked up my oxygen further, and the baby’s heart rate improved. All told, 34 hours later, with two and a half hours of pushing, my little girl arrived, safe and sound.

The hardest part was the chronic illness dimension; namely, having enough air to push. I’ve never been on more oxygen in my life than when I was delivering her, even when I was in the ICU, but it got the job done.

(The whole labor/delivery was complicated and long, but my doctor and team were committed to avoiding a c-section unless it was truly a life-or-death matter because it would complicate how I recovered from the deterioration of my existing health conditions. Ironically, if I’d been healthy, they probably would have done a c-section at some point in the process.)

The best evidence it was the right time? After 34 hours of labor, after not sleeping for 40 hours prior to the induction, preceded by weeks where I did not sleep more than 1-2 hours a night, after a month of contractions—after all that, I still felt better within 5 minutes of delivering her than I had in many, many months. Compared to the third trimester, the ordeal of delivery wasn’t nearly as bad. Everything is relative.

Her healthy squall while she was weighed and assessed assured me she was doing very well, too. It was amazing to finally meet this little person whose face I’d seen on dozens of ultrasounds, whose heartbeat I’d proudly listened to during many non-stress tests.

She was here, and she was okay, and in so many ways, I could finally exhale.

As I started to mention before she was born, it was the emotional intensity of pregnancy and chronic illness, especially during the third trimester, that was crushing at points. It really hit me when we came home and I could move around without worrying my blood pressure would harm her or cause a stroke; when I could lay down flat without suffocating; when I could walk around the block without worrying about oxygen saturation and if she was decompensating; when I could go out in public places without worrying an infection would put both of us at great risk.

It also really hit me when I returned to the hospital for my two-week check-up. I tensed up being back there, back to the scene of so many appointments and tests, often several a week. This time, I did not have to update an anxious husband with the latest results or hold my breath until the technician told me she passed her latest test. I could walk by the admitting office without being escorted to an inpatient floor. I could go home and spend my day with a happy, smiley infant instead of worrying about prematurity, preterm labor, and various fetal outcomes.

In so many ways, I could finally exhale.

Parenting and Chronic Illness
Admittedly, I only have a couple weeks’ experience to discuss. What I can say is that chronic illness and this pregnancy did prepare me for some parts of life with a newborn. The actual labor-related pain/discomfort felt minor compared to everything else. Even a few hours’ sleep is way more than what I got for months, so I am used to functioning in this zone.

Someone commented to me once that the waiting makes all of this even more precious, and it absolutely does. Every single second of the long journey, every moment of waiting, was so worth it. And when I hold her and she snuggles up under my chin, or opens her eyes wide and meets my gaze, or I watch my husband rock her, all the waiting and the intensity are nothing but memories from a different life, a life that hinged on “if.” If we should do this, if she would be okay, if I would be okay, if we would ever have a family.

We have crossed over to the other side, one defined by her, not by uncertainty. We are so thankful she is doing well and so grateful she is in our lives. If the illnesses and stress make us even more mindful of how lucky we are and how precious she is, I’ll take that.

Here at last!

Posted on September 23, 2010 by ledwards

I’m a little behind on this post, but I wanted to let you know that our baby girl arrived a few days ago, healthy and safe. She is doing great!

Fittingly, the labor/delivery was as complicated and challenging as the pregnancy, but it all worked out in the end and we’re home and doing really well. I’ll write a more thorough post sometime soon, but I did want to thank everyone for your ongoing support and encouragement during this pregnancy. Each comment, message, and e-mail along the way has meant a lot to us.

Biting My Tongue

Posted on September 9, 2010 by ledwards

You learn to bite your tongue when you live with illness.

After all, if you responded to each comment about how you’re too young/healthy-looking/productive, etc to be sick, you’d be on the defensive far too often. I feel like the “but you don’t look sick” phenomenon is well documented so I’m not going to drag it out further, but we’ve all been there. It’s part of life with invisible illness.

Living with rare diseases brings its own share of comments and misunderstandings, from medical professionals not recognizing your diseases at inopportune times to blanks stares and choruses of huh? when people ask about your condition.

When you live with infertility, you need to bite your tongue so hard it often feels like the sheer will power required to hold back is more than you can give. Or, you blog about the ridiculous comments and the emotional and physical turmoil anonymously. No, really. I don’t think it’s a coincidence that the majority of infertility blogs I’ve read are anonymous.

(Also not coincidental? The fact that I have never blogged about the daily grind of infertility, or the nitty-gritty specifics of our particular 4-year journey. It’s a choice we made together.)

Like chronic illness, infertility has its own set of predictable annoying comments, from the insipid, offensive “Maybe if you just relax!” to the dismissive “You can always adopt” (right, because that’s such an easy, offhanded decision for all parties involved, as I wrote about here). And these are the lesser offenses, trust me.

Not only are such comments trite and eye-roll inducing, they aren’t even logical. Right. If only we had thought to relax more. That would have solved the whole missing-cilia-in-the-reproductive-system issue precipitated by my lung disease. Heck, by that logic, if I’d booked a week or two in a tropical location or Canyon Ranch and really chilled out, maybe I could have even magically grown working cilia for my lungs, too.

The point of all of this is that combining infertility, chronic illness, rare diseases, and a high-risk pregnancy has been many wonderful, amazing things…and it’s also been an exercise in patience and self control.

I am fortunate to have a great maternal fetal medicine team and office staff who are very hands-on, supportive, and proactive. No one was that familiar with PCD, but they did their reading and extrapolated what has worked with cystic fibrosis pregnancies to tailor a plan of action for me.

When I need more emergent care than what I can get in the exam room, I am admitted to the labor and delivery floor, where an excellent staff handles pregnancy issues efficiently: women in labor, women with UTIs, women with blood pressure problems or other pregnancy-induced conditions, etc.

But handling rare diseases that require oxygen, x-rays, pulmonary consults, and assessments regarding oxygen thresholds for developing babies? That is when I don’t fit in. Some people like a challenge and dealing with novel situations; some prefer to stay in their comfort zone. Patients like me do not adhere to their comfort zones. It’s a simple fact of life with rare diseases and high-risk pregnancies.

We’ve actually heard them arguing about where I should go, with them wanting to send me to a medical floor better equipped to deal with my overall health conditions. Yet, I need fetal monitoring and the bigger issue is not my disease symptoms but how they impact my baby, which is why my doctor is adamant (and 100% correct) that I need to be on the labor and delivery floor. I try not to take it personally, but it isn’t the best feeling ever to hear people explaining why they’d rather not treat me and wishing I were someone else’s problem.

The only time I really took it personally, though, was when I was brought up for oxygen and fetal monitoring (baby was doing well, thankfully!) and my nurse that day decided to open the conversation with this gem:

“Did anyone tell you it would be adverse for you to be pregnant?” in a really judgmental, snotty tone. She could have started with “How are you feeling?” or “Hello, my name is X” or “How are your vitals?” or any number of things, but instead she made it clear to me she didn’t approve of my presence or my decisions.

I was livid.

I thought of the years (years!) we put into this decision—the consults, the second, third, fourth opinions, the sacrifices, the challenges, the support and encouragement we got from specialists, and even the rude, insensitive comments we got from others.

I thought of the baby thriving inside me at 32 weeks, a baby who measured ahead of the curve and looked good on the monitor even while I was truly struggling. Wasn’t her well being and health an indication our painstaking decision was sound? And wasn’t my nurse’s job to treat me, not denigrate my choices and make me feel terrible?

But it wasn’t the time to have a battle. I needed oxygen and peace, and my baby needed those things, too. “If they told me not to have a baby, I wouldn’t be pregnant. What they did tell me was that it would be high-risk and intense but that we would be able to manage it,” I told her calmly, biting my tongue.

The next time I was admitted I had a fabulous nurse, someone whose energy and enthusiasm instantly made me feel better. More than that, she was really interested in learning about PCD and my other conditions, and jumped on the computer to look information up and ask me questions. She thought it was cool to treat someone with a condition she’d never come across. She was funny, compassionate, and utterly proficient.

Out of nowhere, she turned to me and said, “I am really glad you are doing this.”

And in that moment I realized that comments and attitudes like hers transcend all the frustrating comments lobbed our way…and I was really grateful I ended up in her care that day. To her, I was a patient who needed treatment and to her, I fit in just fine.

Waiting

Posted on August 31, 2010 by ledwards

So, I feel like the girl who cried blog or something.

Yes, I have a bunch of posts in various stages of completion, and yes I have a lot to say.

But right now, all I can think about or write coherently about is waiting. We are 35 weeks and two days into this wait, thrilled to have made it this far and hoping we get some more time.

I am not a patient person; this is not new information. But this pregnancy—and the long, challenging journey to get here—have humbled me, have forced me to let go and take things day by day.

We waited a long time for this little girl. I waited a long time to share the news, because it took several months to trust this was real. For the first 18 weeks, we waited for the infections and exacerbations to die down and waited for the necessary isolation they entailed to be lifted. We had 3-4 weeks of relative normalcy, and then other complications emerged and since early summer, we’ve waited and watched blood pressure readings and pulse oximeter results.

We wait for Saturdays, the changeover day, when we complete another week of this pregnancy. There have been points in the past few weeks when we seriously doubted we’d see another Saturday with her on the inside, so as we approach week 36, we feel lucky just to be able to keep waiting.

Over the past few years, through the consults and tests and the risk assessments and the disappointments, I promised myself that if I were ever fortunate enough to have this experience, I would never complain about pregnancy symptoms, I would never be the infertile person who forgot the journey, and I would never, ever take any of this for granted.

I said this before when I wrote about high-risk pregnancy by trimester, but the “typical” pregnancy symptoms don’t bother me. In fact, they have always been reassuring: the severe nausea, the swelling and back pain, the interrupted sleep. They tell me things are still moving forward, they tell me that in many ways, I am just like any other pregnant woman, and that feels really good.

Besides, who isn’t tired and uncomfortable when pregnant? It’s an occupational hazard.

Anyway.

In terms of the high-risk stuff, the complications that mean I am at the doctor’s office all the time and have had more ultrasounds, biophysical profiles, and NSTs than I care to count here? Well, we went into this with our eyes wide open, so we are not surprised by it all. Granted, we didn’t expect some of the issues (like getting discharged on bed rest at 28 weeks for blood pressure or starting contractions at 34 weeks) but we also knew that things like that can emerge in any pregnancy.

I realize I haven’t updated much on the third trimester since it first started. As I said, we expected a lot of the challenges we’ve had and even expected to have surprises. What’s worth mentioning is that there have been good surprises, too. Namely, we expected the baby to do okay—after all, we have the best care available, and intense monitoring and proactive intervention.

But she hasn’t just done okay; aside from some recent bumps, she has thrived. Truly. Measuring ahead of the curve, being accused of being feisty, moving her diaphragm like a champ, kicking and punching all hours of the day and night…she has surprised all of us, doctors included, with her resiliency and buoyancy, even when my body is struggling. The closer we get to meeting her, the more amazing all of this is to me.

The other observation I have to offer is that while I expected the physical stuff and therefore am not entirely fazed by it, what I did not anticipate as readily was just how emotionally intense this trimester would be. The sheer amount of worry and apprehension, the speed with which the situation can (and does!) change, the prolonged state of ambiguity, the toll of spending days (and days) on the inpatient labor and delivery floor—it is much tougher than the physical stuff.

But every second is worth it.

We have both fought hard for every day of this pregnancy, particularly this last trimester. At this point, I feel like I have done everything I can for her, and it is out of my hands. Now, we need to trust in that and watch and wait for her cues. And it occurs to me that maybe that’s the legacy of this pregnancy: preparing me to do just those things when she’s here.

Seeking Simplicity

Posted on August 15, 2010 by ledwards

I’ve been quiet lately, but I want to thank everyone who has continued to check in on me, leave comments, and send e-mails. Your ongoing support and encouragement means a lot!

So, I’ve been working on this post on dealing with the medical establishment and being an active participant for a couple of weeks now. It has languished three-quarters of the way complete for several days, yet I just can’t pull it together.

For one, I’ve never found it useful or interesting to write about not feeling well or detail a list of what’s wrong. If I can take those illness experiences and draw something larger from them, great, but short of that, those kinds of posts don’t do much.

But there’s something else going on. I’m at the hospital several times a week for tests and appointments. I’ve spent too much time on the inpatient labor and delivery floor for someone who has not yet delivered.

I have participant fatigue, people.

And if I’m this sick of the medical establishment, that definitely won’t make for worthwhile reading.

So, I’m writing about blueberries.

Yes, blueberries. Aside from a brief flirtation with clementines in the first trimester, blueberries are my biggest (and really one of my only) cravings this entire pregnancy. It’s like Christmas morning to me when my husband comes home from the grocery store and tells me it was “buy 2, get 1 free” day for blueberries. I eat them by the handful when I need a snack. I eat them on cottage cheese for breakfast or lunch. I never tire of their crisp, sweet, yet pleasantly tart taste.

They are so simple and refreshing, a one-ingredient snack I just need to rinse and eat.

And simplicity is more important than ever when you’re gluten-free and pregnant. After all, being celiac has a lot rules and restrictions, and the dietary guidelines for pregnant woman are not insignificant.

The way I look at food has changed over the past 33 weeks. There is a lot more compromise and negotiation. I started eating (some) dairy again, trading off the phlegm-producing effects for the calcium-rich benefits for the baby. I never drank juice because I don’t like consuming a lot of sugar, but now I mix cranberry or orange juice with sparkling water and know that the baby loves it because she kicks vigorously.

There is also a much bigger desire to follow the “less is more” mindset when it comes to ingredients, and the negotiations continue. For example, I was thrilled to find a popular brand of yogurt that labeled several flavors “gluten-free.” I didn’t have to scour over ingredients, check corporate statements, etc to get some calcium (and coat my stomach for the many pills). Yet these flavors also included a lot of additives and two types of artificial sweeteners, which while cleared by the American Pregnancy Association, are still things to watch.

So what’s the lesser evil?

Spend some time clicking through the Center for Science in the Public Interest’s guide to food additives, and you’ll start reading those labels more carefully.

It’s a tough balance, because I am loath to obsess over every single recommendation and guideline, and I want to enjoy healthy food, not be scared or overly limited by it.

And that’s how we get back to the blueberries. We’ve always had a household low in processed foods but that’s more important to me now than ever. It is easier to eat fresh fruits and vegetables, all-natural peanut butter (nothing but peanuts on the ingredient list), freshly popped corn on the stovetop, and lean meats, chickpeas, and other legumes than it is to navigate multi-syllabic preservatives.

Plus, if you’re watching sodium intake like I am, the sky-high sodium levels in processed foods are another turn-off.

My life is completely overrun with complications and competing health priorities right now. I don’t need to deal with them when it’s time to eat a meal.

Simplicity wherever and however I can find it is so important right now. Luckily for me, my cravings seem to get me just what I need.

Pregnancy and Chronic Illness Webinar

Posted on July 26, 2010 by ledwards

“Did you expect to go on bed rest?” a friend asked me recently.

“Well, we always figured it was a possibility, but we thought it would be related to my existing medical problems if it did happen. We didn’t expect PIH,” I said.

And that’s the thing about high-risk pregnancies and/or pregnancies with existing chronic illness. You spend a lot of time focusing on the known likely complications and risk factors, and have plans in place should the potential turn into reality.

But, in every pregnancy, high-risk or not, these 40 weeks are unscripted. Plans change, problems arise, and you switch gears.

Have a chronic illness and thinking about starting a family? Preparing for the known risks and dealing with the unexpected ones are just a couple of the issues Cheryl Alkon, a type 1 diabetic mom with a new book on pregnancy and diabetes, and I will discuss during our WEGO Health Webinar, “Pregnancy and Chronic Illness.” The webinar will run on August 2 from 8-9pm.

From pre-pregnancy planning and the “can versus should” questions to building a medical team to getting through a pregnancy and balancing your health needs with those of your growing baby, we’ll cover the basics of pregnancy and chronic illness, weighing in with our own life experiences, information from our books, and we’ll open it up for a Q&A session.

Already a member of WEGO? We look forward to connecting with you on August 2. Not a member yet? Joining the WEGO Health community is easy, so check out their site today.

In the meantime, start thinking of questions you have about chronic illness and pregnancy—we’re looking forward to it!

Bed Rest, Boundaries, and Balancing Chronic Illness

Posted on July 19, 2010 by ledwards

I am all over the place these days. I’d like to say some of it can be chalked up to pregnancy hormones, but even my husband has concurred I have not been too hormonal this pregnancy (at least not since the first trimester!). That, and, well, things have been a little chaotic and the usual push and pull between life and chronic illness is more pronounced than ever. I am a conflicted jumble of emotions.

In the aftermath of the major health crisis I wrote about, I want to thank everyone for your kind thoughts and good wishes.

Out of respect for privacy I don’t want to divulge the specific details of my mother’s brain injury here. However, since it greatly affects me, I do feel is appropriate to share just that part of things.

She is making progress each day. For that, we are all incredibly grateful. But it is a long road ahead of us, one with many physical and emotional challenges. Having been an ICU patient more than once myself, I can say without hesitation it is much harder to watch someone you love struggle and suffer than it is to be the one in the bed. That’s my experience, anyway.

Each milestone is reason to feel good, but some days are really difficult for each of us, as they certainly are for her, and each setback is jarring.

I want to be the daughter I normally am in health crises, the one who visits the hospital and is there when she wakes up and can sometimes, just sometimes, make things a little better.

But right now, what I need to do to be a good mother to the little girl growing inside precludes being that daughter. Remember how I mentioned third trimester risks and worries when I covered a high risk pregnancy by trimester?

Well, two days into my third trimester the blood pressure issues I’ve had for a little while got worse and I was admitted into the hospital (yes, the same hospital we’ve frequented a lot this month because that’s how we roll), diagnosed with PIH (pregnancy-induced hypertension), and released on restrictive bed rest (bathroom/shower only).

So, seeing my mother is out, and I miss her. This has the potential to be a very long seven weeks or so—even before this pregnancy complication, the high-risk nature of our pregnancy and my existing health issues are such that 36 weeks is our gold standard, the benchmark we’re fighting hard to reach, and the benchmark we obviously hope and want to surpass.

Things could be a lot worse for my mother and for me, I know. And most importantly, the baby is doing fantastic; she’s ahead of the curve for growth and was called feisty during her biophysical profile. Thankfully, the problems in my body have not affected her, and my diligent, proactive medical team plays a large hand in that.

But, it is an emotional time of highs and lows, of joy and grief, of gratitude and frustration. It is such a simple word, but I am sad a lot right now, even in the midst of being so incredibly happy and excited. In the very same moment I have tears in my eyes about my family’s situation, I will feel my baby girl and automatically smile, the tears parting around my mouth.

What’s better, to have terrible things happen at the same time as wonderful things so the good buoys you up from the bad, or to have them happen in isolation so the former does not mar the latter? Since we rarely get a choice, I suppose it is not a productive question to ask.

I love feeling the baby and try to appreciate every single moment I am pregnant. But we’re also anxious about keeping her safe and while I don’t want to rush through this time, especially since it might never happen again, I think both of us also want to fast-forward several weeks just to make sure she reaches the end goal soundly and without further complications.

In another type of push and pull, the bed rest that is so good for the baby and the blood pressure is decidedly not good for my lungs, which need to be stirred up and moved around to prevent infection. It’s a negotiation I need to work out as the pregnancy progresses, since problems in my lungs most definitely mean problems for the baby.

In another amusing twist of timing and irony, my research-intensive book is due one day before the baby’s due date. On the bright side, I do not need to worry about getting bored while on bed rest.

Right?

Anyway, I am worried I am not expressing myself clearly, worried that reality of being grateful and positive while also feeling frustrated muddles the feelings. But it is possible to experience both at once, as confusing as it feels.

In the end, focusing on the good is the most important thing I can do, so perhaps I answered my own question. There is so much to feel hopeful about, in spite of sadness. I am so proud of our baby, proud that she is thriving and growing so well, proud that she is feisty because she will need to be.

I can’t wait to introduce her to my mother. (But I am willing to be patient so baby, stay put for a good long while, okay?)

Laurie Edwards

Writer, Teacher, Advocate