sacred & mysterious

Before I was married, before Ewan ever existed, I always wondered what it would be like -- feel like -- to be pregnant. To be something and someone for someone else that no one else could ever be: a mother. Sustaining life in its earliest and most delicate and precarious days.

30 weeks pregnant belly
by kirsten michelle (2010)

Much of it was what I had expected but had never experienced directly: the fatigue in the early days, the getting sick. I knew to expect a growing belly, but I wondered what I would look like. Would I get big all over, or would I be what I often heard termed "all baby" -- with the womb just stretching out in front? I wondered at what it would feel like to have another human life inside -- nudging, rolling, kicking, stretching. Living. Another person: another soul with skin and bones and blood.

I don't know how to describe it. As someone who thrives on the stringing together of the right words, I find myself at a loss. I can only say that it is one of the most intimate and mysterious things I have ever experienced. Even the best comparisons I can come up with fall too short. It feels so sacred that I almost fear trying to put words to any of it.

It baffles me that all these days of my life, Ewan didn't exist. He simply was not. And now he is. And he is in me; he can be in no one else.

That boggles me completely. The word "miracle" comes to mind, and in a way that makes me want to whisper it because it is something so incredible and beautiful and mysterious that it seems too little and not potent enough for what this is.

And so I embrace this mystery, pushing away anything that would dare to make it seem less.

30 weeks pregnant & the commentary that goes with it

Go on. I dare anyone to call me "huge".

I have gotten some pretty insane comments over the course of this pregnancy (read about one extended and awkward exchange here): about my belly size, about my ankles, about my diet, about being pregnant in the summer ... you name it. I've been asked if this pregnancy was planned (and advised to plan "better" next time so as not to be pregnant through the summer), if I'm having twins, if I'm sure of the due date, and so on. It gave me inspiration to write a list about things not to say/do to a pregnant woman, but I figured someone had already written such a list.

I was right: such a list has already been written. It's hilarious and true. There are 10 items on that list, and 7 of them have been said/done to me. I figure that I've got 10 weeks left and I'll just give the other three time. I'd love to know what it is (psychologically and sociologically speaking) that makes people who would never otherwise make commentary to a woman's face about her enormous size (or the state of her ankles, whether or not her condition was "planned", or opinions on what she is eating), comment freely and at length about such things.

Can you imagine if I were to go up to an overweight person in a restaurant (or anywhere in public for that matter) and talk to them about how big they are and how they shouldn't be eating what they're eating? I would expect to be slapped or at the very least, kicked out.

In any case, whether or not it's right I know I can't stop people from saying stupid things to me. We've been trying to come up with a direct and truthful response to these kinds of comments that is not mean-spirited. James suggested the following, and I think I'll use it when I'm next in a situation where someone makes a comment and I don't know what else to say:

The most uncomfortable part of this pregnancy for me is all the unsolicited commentary I'm getting when out in public.

It's not rude. It's not retalitatory. It's not mean-spirited. And it's true.

If When I get a chance to use it, I'll be sure and let you know how that goes.  ;o)

the ewan position (part 2)

Ewan is taking a swim on the wild side. Meaning: I no longer have a belly that is hopelessly (and hilariously) lopsided to the right. I wish we could have gotten a picture of just how lopsided my belly has been, particularly when he would stretch out. But it never looked as lopsided on the camera as it did in real life.

My boy has moved more toward the middle!! My guess is that he's grown big enough that as cozy as the right side of the uterus is, he's had to venture out a little further into uncharted waters amniotic fluid.

This means I have more room to breathe, that I don't feel or look quite as big (not that I was ever that huge to begin with), and that I can get a little more mileage out of my maternity tops. Hallelujah!!

The latest belly shot will be updated this afternoon/evening or tomorrow ... I can't believe how long it's been!

"I was born with Tetralogy of Fallot"

Behold, the power of Google!

I haven't Googled Tetralogy of Fallot much for fear of what I might find. I've been very fortunate that many other heart moms who blog have also found me, some of them having babies born with Tetralogy of Fallot (ToF). I can't tell you how encouraging it's been to meet these moms who can validate every feeling and fear I've had, and also offer encouragement and hope as we get ready to face the reality of this defect in Ewan's heart.

But I Googled it yesterday, and I can't really tell you why. I was looking for more personal accounts, more stories. And I found a piece written by Adam on the Saving Little Hearts blog, someone just a few years younger than myself who was born with ToF .

One thing I've struggled with since finding out about Ewan's heart was guilt for the challenges he would face in life that so many children don't have to deal with: surgeries, medications, being a lifelong heart patient, wondering if he would be able to be as active outside the womb as he is in it. Reading this was so encouraging. This young man views his struggles as a gift.

In one of the closing paragraphs, he writes:

I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it. 

I can only hope that Ewan one day has a perspective that is similar to what Adam expresses: that this is a gift, that this brings him closer to God, that it helps him to trust God all the more. I know that's what this heart defect is doing for Ewan's parents.

Read the full piece here: 

I was born with Tetralogy of Fallot.

something good

If I haven't said it before: I really love this doctor. When I was measuring "big" for the third consecutive appointment yesterday, this is what she said:

Yep, you're measuring kind of big. But here's why I'm not worried about it.

(For those of you who haven't been pregnant or don't know what it means to "measure big", here's a brief explanation: for each week of gestation, the uterus is supposed to grow approximately 1 cm. So, at 29 weeks, my uterus should be measuring 29 cm. Yesterday, I was measuring 37. Yikes!!)

(I kind of laugh at "supposed to" anymore. Any number of variables can effect a woman's size during pregnancy)

And from here she explained with how Ewan is positioned (with his head not in the pelvis, but up higher and nearer to the hip), that could add as much as 5-6 cm. When we asked about the possibility of extra amniotic fluid (which is common in babies with certain types of birth defects) she explained that sometimes that does happen, but she is usually able to tell by appearance. Women who have the extra fluid tend to look "dough-y" in the belly and it's hard to feel baby parts. I can tell you, as did she, that it'd easy to pick out this little guy's elbows, knees, and feet. The belly is tight, and it is hard (at least the right side of my belly, where Ewan lives, is tight and hard. The left side is a bit softer, woefully uninhabited as it is).

She expects this to normalize in the next couple of weeks. If it doesn't, then we will cross that bridge when we get to it.

Have I mentioned how much we love this doc and her manner? Yes, nothing but love here!

And here's the really good part. She told us that after speaking with the head of the NICU at the hospital where we will be delivering Ewan, that he is completely comfortable with discharging us together, meaning: they can get Ewan hooked up to the medicine he will need and stabilize him there. Once I'm ready to be discharged after recovering from delivery, then we can transfer to Children's Hospital.

I can't tell you how amazing it is to know that we will have that time -- that he won't be whisked away right after he's born!! It's a comfort to this mama's heart to know that at least we can have that time together. :o)

facing it

Yesterday I scheduled our second (and final) fetal echocardiogram prior to Ewan's birth. We knew we needed at least one more at about 36 weeks, and until yesterday, that appointment had yet to be scheduled.

It felt so weird on so many levels scheduling that appointment. I felt excited. I felt tense and nervous. I felt as I talked to the receptionist like I was holding my breath, letting it out in a deep sigh when I got off the phone with her.

It's so close to my due date.
He (and I) will be so big!
The doctor may see more wrong than he saw before.
There may be improvements.

There might not be improvements.
Might things be worse?

There may be a miracle.

There might not be a miracle.

As long as he's inside me and as long as my pregnancy is progressing with relative ease as so many do -- without any real hiccups or drama (aside from the obvious heart defect, which is enough) -- it's easy to imagine anything: that everything is and will be alright, that we will sail through this. This is not to say that the reality of the diagnosis has become any less potent for me, and it's not to say that I'm blindly holding on to the belief that somehow, the doctor was misguided in his diagnosis.

It's just that as long as Ewan is in me, growing and thriving, things are good. He's safe in there. He's not in any distress.

But that fetal echo has one specific purpose: it will give the cardiologists at Children's Hospital the best possible pre-birth view of what they can expect to encounter once Ewan is born. And so this fetal echo means facing it: the day Ewan no longer occupies my body, the day I can no longer shield and protect him in the way I do now. The day my heart will break a little bit more, and a little bit more again. The first day of many where I will hold my breath and wait.

This appointment means facing the inevitability of that physical separation, facing the thought of letting him go, of trusting those who are best equipped to care for his unique needs.

Deep breath.

I'm torn between the anticipation of meeting our feisty little punkerbelly, and just wanting to keep him in there forever. I don't think I will ever feel ready for that moment: the one where it suddenly feels like my heart is outside my body.

photo taken by james // processing by me

july 2010

considering the possibility

I'm fortunate enough to be married to someone who is not scared to delve into any topic. Something that has come up for us a couple of times now, for example, is this: Have you thought about if Ewan doesn't make it?

The answer is an unequivocal yes. I -- we -- have thought about it. And we've talked about it.

This shouldn't be surprising -- I've raised the issue before. While the loss of a child could happen to anyone, it's not what most expectant parents are thinking about. The possibility is especially inescapable when you know your as-yet-unborn child has a severe heart defect, the particulars of which make a seasoned pediatric cardiologist go long in the face. We know the numbers and cannot forget his words. He was too sober for us to mistake his full meaning.

So we've thought about it. It is a possibility. I have to acknowledge it. The risk is there, and it's not insignificant. It's not, as some have said, just a quick "patch him up and send him on his way" kind of proposition.

But what I don't have to do is dwell on the possibility of loss; I don't have to live there. I'm still getting a nursery ready and still buying baby things. I'm still celebrating his growth and his kicks and all signs of his rather raucous activity in the womb. I still call him by name and we still speak of him in a future tense. I still err on the side of hope for one simple reason:

Ewan is here now, and he is alive.

So we live with that reality.

As a Catholic, something that gets discussed a lot is "being open to life." This means a lot of things: not simply taking an anti-abortion stance, but actually keeping the marriage relationship open to the possibility of new life. This has taken on new layers of meaning since learning about Ewan and his heart.

Being open to life has meant not only continuing the pregnancy when the medical community presented us with the awful "option" of deliberately ending our child's life (never an option in this family), but also living with the hope even in light of the diagnosis and being open to the greater possibility that his life will continue: that Ewan will live and grow and thrive.

This doesn't mean there won't be challenges, that it will be easy, or that we're living with our heads buried deep in the sand. Living with hope is easier on some days than others, especially when taken in consideration with a host of other unknowns. But I simply refuse to behave as though he's not even here, or that we must imagine his funeral before he's even born. It's simply unthinkable to me.

This is where I have to rest right now because right now, I have a baby boy who is very much alive (and who, at almost any point of the day, is more than ready to prove it to you).

And so we live, hope, celebrate and prepare. We acknowledge the possibility of loss without living as though it is our present reality. Because here and now, he is so very much alive.

we're back!!

At about 2 a.m. on Friday morning, James and I crawled back into our apartment and welcomed the cool embrace of the Seattle nighttime air. Having already spent 4 hours waiting for our connecting flight at DFW, we opted to wait another two hours in exchange for a pair of travel vouchers that amount to a free trip for us sometime in the next year.

We're doing laundry, restocking on perishable foods, and I'm madly processing the worthy photos of the 1800 I took. I kid you not: there were 1800 images on the memory card of my camera -- for six days in Kansas. I hope to post some here soon once I have a few more processed. For now, here's a preview ...

Three of Ewan's (nearly 20!) cousins

Claflin, KS

10 July 2010

The long and the short of it is we had a beautiful and wonderful trip (despite being in my third trimester of pregnancy and putting up with triple-digit temps with some ridiculous humidity). James has the most amazing, welcoming, and loving family. It's amazing to know that the three of us are surrounded by such a spectacular support network -- and that we just so happen to be related to some of them.

I hope to provide more updates soon, but that's about all I have for now. The dryer just finished, and there are some dishes to be done.

hugs,
k

leavin' on a jet plane

But in this case, we have a pretty darn good idea of when we'll be back again.

In case you hadn't heard, James and I are out of town visiting his side of the family in Kansas for the next week. And we're taking the baby with us. :o)

We will be back on July 16, and look forward to catching up with you then.

today

Today there is no happy update. To be clear, nothing bad has happened and nothing has changed; I've just come to a place again where I'm experiencing some anger about all of this.

When I started this blog, I promised honesty. Reading this might seem a bit like whiplash in light of all the recent positive updates. Make no mistake: I still recognize how very fortunate and blessed we are given the circumstances.

It's the "given the circumstances" part that I'm battling today.

I can't totally explain or discern where this is coming from. But honesty is the policy around here: so there you have it.

Today, my heart is tired.

Today, I can't be particularly pious about this.

Today, I'm tired I've being special, of having a special pregnancy. Today, I would give anything for normal, textbook, boring. Unremarkable.

Today, I want a little fairness out of life (knowing that this is a double-edged request). I've taken great care with my physical health over the last several years: I want taking care of myself with my diet and exercise and taking the right vitamins ahead of time and never smoking and not drinking excessively and doing the right things to matter when it comes to having a healthy baby.

Today, I'm tired of feeling helpless.

Today, I want to go back to the 20-week ultrasound and hear that everything is perfectly normal, and know that it's true.

Today, I can recognize the blessing that has already come out of this, acknowledge the blessing that will come out of this and still say: Take it all back, please. I want my healthy baby.

Today, I'm sick with knowing that we haven't even gotten to the hard part yet.

Today, I want all my measurements to be normal, and not have to worry about what it might mean to be measuring too big. It could all come out even in the end, or it might not. Today, I don't want anything else to worry about. I don't want to have one more obstacle to face over which I have exactly zero control or influence no matter what I do.

Today, I just want a break from all of it.

Today, I don't want to ask for strength and grace to endure this and what will come. I just want it all to go away. I want a miracle, and I say NOW would be a good time for it.

Today, I want to go to bed and wake up in a tomorrow where congenital heart defects don't exist for me, or for anyone. I want mothers who have lost their babies to have them back healthy and whole, and for their tears to be redeemed in the present.

I'm just plain tired of today.

a quick update

We met for the first time today with Dr J, the OB that we were referred to by our midwives and doula. And the concensus is ...

Two big fat THUMBS UP!!

We absolutely loved her, and are confident that without directly being in the care of midwives, this is as close to midwife care as we could expect to get from a doctor. She is incredibly straightforward, personable, and has a good sense of humor. She's thorough and likes to be uber-prepared. She assured us that we can have whatever kind of labor and delivery that we want, and that we're free to change our minds at any point in the process. She doesn't believe in cutting episiotomies (yay!!), or intervening unnecessarily to "speed things along", stating that when she went into this profession, she understood that she'd be having long nights and forfeiting sleep. Her "line" when it comes to interventions is when she determines that mother and/or baby are in any kind of trouble.

I like that line.

She also listened to Ewan's heartbeat. She explained to us that "Tet babies" tend to do quite well and tolerate labor and delivery much like any other baby. With the way circulation and everything works in the womb, it actually works really well with the defects he has. It was reassuring to hear this. She also checked his heart rate which was in the very healthy 140-150s range.

Under the circumstances, we feel incredibly blessed that there is a doctor like her who is willing to take on the care for the three of us. We will see her again in two weeks for another check-up.

In other news, I have my glucose tolerance test today with our midwives (today really is all about the baby). Given the particular focus both James and I have had lately on healthy eating (e.g., whole grains, no flour, no added sugars, fresh veggies, lean protein, etc.) and exercise, James is particularly interested in seeing how it is for me getting 50 grams of highly concentrated liquid glucose down my gullet. I expect things should go smoothly in this department as well, but chugging orange-flavored syrup ...

Ugh.

the ewan position

There are certain things about this pregnancy that I never want to forget, so I hope you don't mind if I journal about them a bit here. My Mom has talked about how, with my siblings and I, our personalities were evident even from the womb.

My older brother for example, was pretty chilled out in the womb. Rarely a squirmer or terribly active, he was just chill. And that's exactly how he is: laid back, chilled out, rarely does anything ruffle his feathers. My younger sister, it is told, "delivered herself." She made her entrance into the world quickly, and without the aid of the doctor or even the nurse. The water broke, and lo, there she was! And she still does things on her own terms. 

I was a stubborn baby. I was the only one to remain in the womb past her due date. And I liked to use my mother's ribs as a footrest. It is reported that I would stick my feet and toes up between her ribs, lodging them where (apparently) they were the most comfortable. Mom would try to shove them back down, and I would push them back up. This went on for some time. After I was born, Mom learned that my antics had torn cartilage and injured her ribs. I never really have been afraid to make a stink about things, have I? And I'll arrive when I'm good and ready.

I have a feeling that Ewan is no different. Allow me to demonstrate his position, one that he has maintained for the last several weeks.

Click on image to view larger

Ewan infinitely prefers the right side of the uterus. As far as I can tell, he has never ventured to the other side. The left side remains uninhabited. What's more, it seems that Ewan is more than ready to make his entrance. Oftentimes, I can feel him stretch to such lengths that it feels as though he is trying to as escape the womb early. When he does this, he also likes to stick out his bum, lodging it firmly into my right side. When he does this, my belly becomes noticeably lopsided. It's hilarious.

So, his feet. Yes, I knew this was going to happen. This is some kind of poetic justice or another! Ewan takes after his mother when it comes to his feet. We have had several instances of foot-rib contact which, on the upside, forces me into perfect posture so I can breathe and don't become too sore. From his head-down position, he kicks all over the place in the belly, often in the middle -- or the right side, or the left. It's really hilarious when his feet get going. It looks like someone stuck a wave machine in my belly.

And then there's his new thing. I think he's discovered how to use his hands and head for maximum impact. I can't tell for sure what kind of movement is taking place, but I think he might be head-banging and punching me in there. It's cute for now, seeing his little hands make waves in lower spots in my belly than we're used to seeing.

Then, there is what I call the baby body slam. Again, not sure what kind of movement is taking place here, but I can feel his whole body shift when he does this. He's quick about it, and what I feel is pretty dramatic. It's not a slow squirm or turn of the body, so much as it is him slamming (as much as one suspended in amniotic fluid can "slam") his body into some new position or other. Quite cute.

I am so thankful for all of this, really. I have my moments where I wonder if he's going to do a number on my ribs like I did on my Mom's. But I'm glad he's feisty. I will gladly take a little rib-breaker who isn't afraid to make a stink. I'm glad he's fighting in there, because he's going to need it. We're going to do our part, but I am counting on him giving Tetralogy of Fallot a 1-2 KO punch where it counts and showing doctors a little fighter such as they've never seen.

Keep punching, Ewan. Keep on kicking!

And then when we bring you home, please be nice to your Mama. :o)

Prayer & Conversation Cards

Just a little over a week ago, I was thinking about the conversations I had been having with people about Ewan and his heart. This site is obviously one of the main hubs where all the updates are taking place. How could I direct people here easily -- hope they remember "Team Ewan" and will Google it once they're home, that they will remember how to spell his name, or that there's a dash in the website name?

And then I thought: business cards with all the information listed on them. Small, easy to distribute, and this way, people don't have to remember anything.

Problem solved. So I have these conversation cards -- way too many to distribute on my own. And that's where you come in. While I understand that I may be having these conversations way more than some of you  might, I do know you're having them. I do know that you are praying, and are asking others to pray. In order to spur on those conversations, in order to pass on the word about Ewan, I'd like to send you some to give to those who are interested in joining our team.

Card Front:

Team Ewan logo

Card Back:

Team Ewan website, Facebook page, Twitter feed, and e-mail

The quantities are limited, but I can order more if needed. If you want to advocate Team Ewan amongst your friends, churches, or other groups, I'd like to send you some of these cards. I have 100 on hand now, so if I run out, I will definitely order more and send them out as soon the additional supply arrives.

If you're interested in receiving some, please drop an e-mail to team [dot] ewan [at] gmail [dot] com with your name and mailing address. I will send you five cards at first to distribute as you wish and to help support those conversations you're having with others.

NOTE: These cards are made from recycled materials and are 100% recyclable.

Blessings to you, and thanks for being a part of Team Ewan!!


P.S. Best wishes for a safe and happy fourth!!

moment of silence for baby cohen

For more information, or to participate yourself, check out this post at the Send Love to Cohen blog.

Wishing much, much love to the Marshall family. Our hearts and our prayers are with you. May the good Lord carry you and keep you, may He bind up your hearts and dry every tear. May peace and love surround you. May you know you do not walk alone.