Category Archives: Infertility

Letting Go

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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

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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.

Biting My Tongue

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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

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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.

A High-Risk Pregnancy by Trimester

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We last spoke about chronic illness and weather, and then it went and got all humid on me and I fell into a black hole for a spell.

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester*
*I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester*
*Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

Transitions

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This week is National Infertility Awareness Week.

I’m posting this a little late in the week because I’ve been struggling to figure out how to approach this on the heels of my recent pregnancy announcement and musings on what this development might mean for my blog.

If you’ve read our story as outlined in the announcement post, then you know that infertility is still very much a part of our experience and our pregnancy.

I’ve written about the complexities of chronic illness and infertility several times over the past several months/years, but still many of the specific details of our journey remain offline. That’s just what works for us. But over the last few years, I’ve found myself reading infertility blogs more regularly than I’ve read chronic illness blogs. The humor, grit, empathy, and authenticity I’ve discovered in so many women’s stories have been both informative and inspiring.

I never wanted to turn my blog into an infertility blog. Rather, I wanted to discuss infertility within the context of chronic illness and explore the overall challenges of building a family despite illness, whichever path that entailed. I’ve always been a strong champion of the idea that specific symptoms and disease labels are less important than the universal issues we face as patients: acceptance, guilt, or control, etc.

I’ve realized the same holds true in the infertility community. We all have different stories and different reasons for our struggles. In my case, it was easy to feel a little isolated: unlike so many women (and men), I don’t have reproductive problems aside from those caused by my lung disease. I mean, how many people are out there writing posts about a genetic lung disease making them infertile? The precipitating issue and the ensuing pregnancy challenges my illnesses pose are indeed rare, but the overall experience is similar: we all have to fight really hard for something that is natural and automatic for other people, and the avenues we ultimately take to build our families often differ from most of the people in our lives.

As I processed all of these thoughts this week, the link between what I wanted to say about the future of this blog and National Infertility Awareness Week suddenly became clear: it’s all about transition.

People who experience infertility transition from thinking pregnancy is a given to realizing it will be a struggle. Often, the question moves from when pregnancy will happen to when parenthood will happen, because so many of us who go through this do not end up with a viable pregnancy. It’s a transition in the expectations we had for our families and for the process we thought would be involved.

A colleague and friend of mine remarked that “the waiting makes it all the more precious” and I could not agree more. If there’s one thing we all share, it’s the waiting, the excruciating, mentally and physically exhausting waiting. For those of us fortunate to have some sort of a happy ending, hopefully the preciousness of it is universal, too.

I hope I never take a second of this for granted, knowing the four years of difficulties that went into it and knowing there are women who are not as fortunate, women who have to transition into totally new realities for their lives, ones that may not include children.

So while we’re discussing transitions, I so appreciate all the warm wishes and support as we transition from infertility to high-risk pregnancy and impending parenthood.

I do plan to discuss our pregnancy, but within the context of chronic illness and, again, the more universal issues of parenting with chronic illness. This won’t become a pregnancy or motherhood blog, and for many reasons: the privacy of our expanding family; my readers still living through infertility; adhering to the main purpose of this blog, which is to discuss chronic illness in young adults. I’m not a belly-shot person, and if I write letters to our child, they, like a lot of this personal journey, will remain offline. When I do have pregnancy stories and moments I think will resonate with the community of young adults living with chronic illness, I will definitely share them.

In fact, I’ve got a bunch of posts in mind already, tidbits I’ve been storing up for a few months now.

But this week? This week is about transition, so I will hold off. I’m getting there, and I’m so grateful to have you along for the ride, and so grateful to have learned so much from so many of you as we’ve progressed.

The Rest of the Story: Children and Chronic Illness

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In some ways, I’ve been drafting and revising this post in my head and heart for almost four years.

I first touched on chronic illness and infertility in August of 2006, with this post on numbers, statistics, and hope. Since then, we’ve talked about can versus should, the tough decisions potential parents with chronic illness face, and other universal aspects of having a family. But the behind-the-scenes story? That was never fodder for this blog.

It’s been 44 months since we first started trying to have a family. That’s three years, eight months. Not as long as some, I know, but too long. About eighty percent of our marriage, in fact. Forty-four months later, I see this long journey as characterized by moments of awareness, a series of changes in thoughts and assumptions that challenged our perspectives.

There were moments of realization:

Along the way, I fell completely in love with other people’s children, and realized emotionally what I knew intellectually: unconditional love does not adhere to boundaries of biology or relationship. Parenthood does not depend on pregnancy, something I knew but didn’t really know until I knew. With that, we both realized that no matter which path we took to build our family, we would do the right thing for us and it would be our first choice, not a fallback plan.

I’ve realized no matter how hard we try and how much they really do care, there are people who will not understand, who cannot give us what we need or speak the words we are desperate to hear. I’ve realized that this is okay. I’ve learned to let go.

Similarly, no matter how many consults and additional opinions we’ve sought, no matter how meticulous and deliberate we have been about our decisions, there will be people who judge. And while hard, that too is okay. I’ve realized that doing right by each other and our potential child is all that matters—with that realization comes some freedom.

There were moments of isolation:

Not surprisingly, my ongoing fascination with language spills over into this journey. If you take the adoption route you become fluent in terms like open adoption, or the semantics of birth parents, first parents, adoptive parents, etc. If you look into surrogacy, you’re flooded with euphemisms: at our hospital, the preferred term is “gestational carrier,” and the recommended agencies have all sorts of feel-good names. If you pursue assisted reproduction you start speaking in code: IUI, IVF, 8dp3dt, BFN, BFP, PIO.

But either way, you no longer speak the same language as most of the people around you. You speak the language of “if,” when so many others take for granted the “when.” And some days, surrounded by the “when’s,” the easy talk of when pregnancy will happen and the carefree assumptions about when siblings will arrive, is a lonely place to be.

In another twist of language, I learned that putting the words “very early” in front of “miscarriage” does not mean it is not sad. I wondered if anyone could see the shadows of that loss when I wrote about disappointment. Private sadness is indeed isolating, however necessary it is.

Of course, there were darker moments:

I remember one particular day last spring. It was the first bright, sunny day that thawed winter’s slush, and after a terrible doctor’s appointment it was the first day we truly felt, however fleeting, there was little hope. What good were all these options people kept talking about, I kept talking about, if none of them seemed attainable?

“You know the hardest part of all this? Waking up and going through the day and acting normal when it feels like the world is crashing down,” I said to my husband. For many weeks, when I woke up and realized the situation had not changed, I felt I was in a living nightmare. I hated people to hear or see me cry, so I simply didn’t talk to many people.

Another sunny spring day we all waited in a hospital waiting room, anxious for the arrival of a much-loved baby. I kept jumping up to take cell phone calls in the hallway, re-scheduling consults and high-risk assessments. I was angry, not because I was being told I might never carry children while hanging out in the maternity ward, but because even on this happy day when I wanted to be fully present in the joy, infertility was literally stalking me. It had already taken so much.

We made a cocoon for ourselves so we could filter out the white noise and weigh what we wanted versus what is most fair to a child. Anytime you bring the “can versus should” element into a conversation about children, the responsibility inherent in that is staggering. We take that responsibility more seriously than anything else in our lives.

In these moments, I, we, have learned sadness and grief, frustration and disappointment. But we’ve learned much more. As hard as it was to hide what weighed us down, it is even harder to hide good news, joyful news, especially when it has been such a long time coming and has exacted such a toll.

And so I am pleased to share what is truly a moment of joy: This fall, we are expecting a baby.

It still feels strange to type those words. Despite the many ultrasounds, the many doctor appointments, the talk of showers and strollers, sometimes it is hard to believe this is happening, this thing that happens for other people.

I am incredibly grateful and excited. When I first found out I cried so hard my poor husband thought I had yet more disappointing news for him and instantly went into consolation mode. I simply did not have the words to explain happy tears.

We have pictures proudly displayed on our fridge and multiple teams of doctors monitoring every breath, doctors who never forgot to say “congratulations” amidst all the precautions and variables. What a beautiful word.

We kept this news to ourselves for a long time. It’s high-risk. I’ve already been hospitalized. We’ve lived through loss. I have jobs and policies and details I needed in place. We are fiercely protective of this little one. But at 16 weeks I am getting comfortable telling people, and I love sharing news that is actually good.

And through this all, there were (and still are) moments of relativity:

Infertility was merely the starting point. Infertility with a guaranteed high-risk pregnancy and chronic illness? It’s a tough combination to contemplate, but everything is relative. We have to focus on the tough road ahead of us, and I know we can do it.

Baby showers and pregnancy announcements never bothered me, and seeing babies always brought me joy instead of reminding me what I did not have. I pretended I was immune to a lot of the emotional fallout from infertility, that I was focused solely on risk analysis and decision-trees. Not true.

Now that I am pregnant, I feel the aftershocks of infertility. I see the many bits and pieces it chipped away, and the bits and pieces the high-risk nature threatens. The first time I checked out the maternity section of a clothing store, I couldn’t relax. I was in a cold sweat; I felt like a trespasser. Now that I’m closer to needing new clothes, it’s getting a little more real, a little easier.

After 44 months of this, my gut response to the topic of so-called “push presents” is, isn’t the baby the gift? My mother asked me recently if I had a preference for a boy or girl. “Alive,” I told her. All I want is a baby as close to full term as possible and for both of us to come home from the hospital and be okay. That is the gift. That is everything.

Lastly, there have been moments of growth:

We often sit at night in my husband’s office, soon to be the nursery. He uses the desktop computer, and I sit on the bed with my laptop. We talk about paint colors, and even well into the first trimester I would stop, mid-conversation.

“Are we allowed to talk like this, to plan a nursery?” I ask.

“You are pregnant. We are having a baby. It is okay,” he reassures me.

So I exhale and smile and think about meeting this little person whose waving arms and bent legs on the screen make my husband smile from his eyes and put all the oxygen I need back in the room as if by magic. And I allow myself.

And when I get overwhelmed by the realities of this high-risk pregnancy, when I worry that everything I am doing to keep us both healthy will not be enough, I think of this baby squirming around, a baby who is thriving. This is the only type of pregnancy I will ever know, and I embrace it fully. I allow myself.

I am proud of us, proud that we came through this journey intact, a better team than we started. We always told ourselves that somehow we would be parents. Only a few months into dating, we knew this was what we wanted for each other and with each other. We had no way of knowing just how long a journey this would be or how it would end, but we wouldn’t change any of it.

So I am working on a new lexicon, one centered on “when.” We talk about the baby’s library or imagine walking him or her to school up the street and talk about the kind of parents we want to be, and it is no longer strictly hypothetical. We imagine new moments, new possibilities, and we are buoyed by the one word that started this whole conversation 44 months ago, the one word that is important than ever: hope.

Color Me Riled Up

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My mother always said she could tell when I was feeling better because I had the energy to be riled up about something. Well, I’ve been free of acute infections for a whopping two and a half weeks, which is actually a December-January record for me, and it’s time.

I’ve written about pregnancy and chronic illness several times, and from different angles: can versus should, the waiting game, etc.

The decision to carry a child, use a surrogate, pursue adoption, or remain childfree is intensely personal and depends on so many variables: disease progression, diagnosis, finances, health insurance, religion, culture, etc.

I completely understand and respect women/couples who, given their particular health and life situations, decide pregnancy—and perhaps parenthood itself—is not for them. (I am focusing on this in relation to chronic illness; I realize these family-building decisions are incredibly complex absent chronic illness, too.)

But what bother me are the blanket generalizations that people with chronic illness shouldn’t have children because they will pass on their bad genes and/or because that child’s quality of life will not be what it could (should?) be if a parent is sick. I made brief mention of this in my Dear Thyroid post, but didn’t get into detail.

You wouldn’t believe where I’ve heard/seen these types of comments: cocktail parties, wedding receptions, blog comments, etc. Usually, the people talking don’t know my situation; they’re just making sweeping claims in passing about things they really don’t know much about.

Internal monologue #1: It’s easy to be a smug 20-something guy two beers into a party and say you wouldn’t marry or have children with someone who’s sick, but let’s just hope for both your sakes that your fiancée isn’t one of the millions of healthy young women who will go on to develop autoimmune or other chronic conditions during peak marrying and child-bearing years. Internal monologue #2: You are only reminding me how incredible my husband is, so thanks for that.

Inheritability is a very serious issue, but there’s a huge spectrum of diseases, from those with a definitive test for direct inheritability (eg Tay-Sachs) to diseases with a genetic component (eg celiac disease). Medical experts have told us if we decide to have children, they are not at risk of being born with PCD. As for the other diseases floating around in my family’s genetic pool, yes, there are many. But considering 130 million Americans live with some sort of chronic condition, are there really that many people who can say things like heart disease, cancer, diabetes, or arthritis, which often have a genetic component, aren’t in their family history?

Want more on this? Please read an older post I wrote on genetic ignorance.

As I think about the second point, the quality of life issue, I am sidetracked by this NYT article on surrogacy. I found the article sensationalist and unbalanced, and was not surprised by many of the vitriolic comments that followed.

I don’t want to get too bogged down in a pro-con discussion of surrogacy and IVF, or the spectrum involved: one couple trying to have their biological child; egg donors; third-party arrangements, etc. But I’d like to point out that just as the majority of people undergoing fertility treatments are not Octomom, most people going through surrogacy are not 60-something, unmarried men who think it’s acceptable to bring bird feces into NICUs. (Confused? Read the article.)

In many ways, I see parallels between the mental illness issue in this article and chronic illness: who is qualified to make decisions regarding a patient’s fitness to raise children? Many people countered this article with comments like “Just adopt.” But I’m taking that phrase out of the context of the article, because it’s one people with chronic illness and/or fertility problems hear tossed around so often. (Cue pulse quickening and face reddening here).

See, here’s the thing. It can be incredibly hard for people with chronic illnesses to adopt. I can’t tell you how often I’ve heard that fear echoed by women with all sorts of chronic conditions. Also? Unless you’re considering the foster care system, which is a whole different conversation, adoption is often really expensive. In some states, and depending on health insurance, assisted reproduction is actually more affordable.

But more than that, throwaway phrases like “just go adopt” diminish what an incredibly emotional and difficult experience adoption can be for all parties. Yes, adoption can be a wonderful thing, but I’ve noticed it’s never the people who’ve gone through adoption who blithely proclaim, “just go adopt” like it is that easy, like it is simply a fallback plan. It’s usually the people who’ve never had to consider giving up a child or adopting one who make those comments.

So where are the in-depth, balanced, mainstream articles about adoption, articles that take a realistic (not sensationalist) look at what is gained and what is sacrificed? Why aren’t more people interested in eradicating disreputable or exploitive adoption agencies, the way we’re so quick to excoriate Octomom’s fertility clinic? (And for the record, reputable fertility clinics have this main goal: one healthy baby.)

Check out This Woman’s Work or Chronicles of Munchkinland for honest, insightful writing on the many benefits and drawbacks of open adoption from an adoptive mother and a birth mother’s perspective.

Similarly, there are those (again, usually those who have not lived with infertility) who say things like, “So can’t you just go do IVF?” And yes, many people with chronic illness can choose that route. But it’s emotionally and physically grueling (especially if you’re juggling other medical conditions), costly, and there’s also that little matter of no guarantee it will work. These are the realities patients who choose IVF accept when they make this decision, but to characterize IVF so cavalierly is really irritating.

Check out Relaxing Doesn’t Make Babies or Infertility on the Brain for honest, compelling writing about infertility, IVF, and loss. Religious and moral concerns aside (because they are many and varied, I know), can you read of such struggle and still say “Can’t you just go do IVF” like it’s as simple as getting a flu shot?

I have not delivered a baby or tended to the ever-present needs of a newborn while managing illness, and I am not currently in the process of adopting a child. But I am a person for whom these conversations are anything but rhetorical. I am not naïve, and as I’ve written in Life Disrupted and on this blog many times, I know that chronic illness complicates every single aspect of building a family and parenting a child. It requires a lot of planning, preparation, and yes, realism.

But to bring this full circle, let’s return to that quality of life issue. You see, this one I am qualified to speak about, because I am the child of parents with chronic illness, parents who were seriously ill when I was growing up and who continue to face challenges.

Yes, there were scary and sad moments, and yes, we all made accommodations for illness. But despite their sicknesses and mine, I had a wonderful childhood. When other kids had parents who wouldn’t let them play on travel teams or attend sleepovers because they simply didn’t want to drive them, my parents hauled us to hockey and figure skating, baseball and ballet—even when on crutches or chemo. They didn’t want us to miss out on anything. Even at the lowest points (disability and potentially terminal illness) they somehow made it work—we never doubted we were their priority, and they gave us every opportunity imaginable. Looking at things from an adult perspective, I am even more appreciative because I have a greater sense of the sacrifice involved.

So I’m a little sensitive when the topic of quality of life comes up, when I hear about how hard it can be for people with illness to adopt or hear passing comments about why people with chronic illness shouldn’t be parents. It boggles my mind the hoops people who aren’t “conventional” applicants must jump through in the adoption process, or the ignorance people who live with illness or must undergo infertility treatments (or both) can face. People who are fortunate enough to be healthy or to have no fertility problems don’t have these expectations on them, yet as we know all too well from headlines, simply being able to conceive and carry a child does not a good parent guarantee.

Some of the best parents I know just happen to have chronic illnesses. When I think of them, that is what comes to mind first: they love their children unconditionally, they put their children’s needs before their own, they give appropriate parts expectation and compassion to their children. I think of them as parents first, and patients second, and I think that reflects the way they live their lives: they are not defined solely by illness, and their children’s lives are not defined by parental illnesses, either.

To reiterate, of course there are situations where people decide their health problems are too overwhelming to add children to the mix. That’s a smart, responsible decision. But my point here is that it is a decision potential parents and their physicians should make, people with actual understanding of the factors involved.

(Cue stepping off soapbox. For now.)

These Three Things

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It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

The Waiting Game (and how to play it)

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(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all–only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that’s okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I’m sounding a bit demanding here, aren’t I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor’s update: I forgot to mention that the best thing you can ask for are these words: “We’re here for you and support you in whatever decision you make.” Fortunately, this is is something I’ve heard often.)

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A totally unrelated PS–Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!