Roller Coaster

On the beach in Naples, Florida (2011)

What a year it's been! On this day last year, I was nearly 20 weeks pregnant and still looking forward to finding out if my squirmy little baby was a boy or a girl. It was just a couple of days later that our lives changed more than we could have possibly imagined.

Looking at all that's transpired since then is a dramatic journey: Ewan's birth, his death, everything that came after and in between, going back to work, my husband finding a job on the opposite side of the country, planning a cross-country move, finding out I'm pregnant again, preparing to leave the company where I've worked for the past 11 years, and most recently, my grandfather's death and the second eulogy I've delivered in the space of a year.

The question as to whether or not I've retained my sanity is, as far as I'm concerned, up for grabs. With so many ups and downs, twists and turns, going just a little nuts seems inevitable. I believe something so good is waiting for us in Florida -- a new, fresh start and a chance to begin again -- on the other side of this transition. It is my hope that this time my husband and I have to be apart is like the labor pains leading up to a birth -- that once I arrive, we can kick up our feet and catch our breath and rest a little. We've been through too much to expect life to be a breeze from here on out, but a vacation from all this turbulence would be nice.

Writing my grandfather's eulogy was a struggle. Of all the people that knew him -- many longer than I've been alive -- I was the one asked to put pen to paper and speak for our family. It was a humbling task and a daunting one. I felt pressure to find something fitting to say, to have the right words that would honor such an amazing man. When I expressed this to a friend, he said, "The Lord will give you the strength to do what you need to do." I chucked and replied, "The Lord has done that a lot this past year -- He has given me strength to do what I need to do. But I hope what He gives me next is a rest!"

And I do hope that. That is what I want, and what I feel like I need: a rest.

It's not without precedent in Biblical literature. After Job's great suffering, God blessed him with more than he had before. The roller coaster eventually stopped, and he was able to get off and recover. He enjoyed a season of blessing. I imagine Job had to feel something like rest or relief after all of that.

I don't know what waits for us on the other side of this. Nobody really does. But I think the roller coaster is already slowing down, and I have the hope that whatever it is that happens when we get off, it's going to be good.

In These Two Hands

I've written before about the tension in life that everything we've been through in the past year or so has made so evident -- how life is not in fact black or white, good or bad, joyous or painful. It is all these things almost all the time. And sometimes holding both feels like a push toward the edge of sanity.

As we are finalizing our choices about Ewan's grave marker, we also received news of a glad nature -- news that lightened our hearts even as we felt the knife twist from having to make choices about what our firstborn's grave marker would look like.

We just found out that Ewan is a big brother. We just found out that we are expecting Baby #2.

We've waited and hoped for this day for awhile now. And while in my mind I know that rejoicing over Ewan's sibling is in no way a dishonor to Ewan, there is something terribly bittersweet about it. This pregnancy can't help but call to mind my first, and the joy and anticipation with which we looked forward to the pregnancy and birth of our first child.

In the one hand, I hold hope and joy and the promise of a new beginning. In the other, I hold a knowledge of the world that I did not possess a year ago -- the knowledge of CHD, of fatal defects in those who are still being formed in the womb, of holding a son while his heart beats its last. I am not so naive anymore.

There is no reason to expect any of that will happen again. Statistically, what happened to Ewan was unlikely. Perhaps not so rare -- about one in one hundred according to some figures. But there is still a weightiness to this hope that, in the early stages of this pregnancy, surprises me somewhat.

In the one hand, hope and joy and new beginning. In the other, the memory and the ache of the child who left.  One does not cancel out the other. They are the realities I hold, one in each hand.

Even so, my joy is great and this new child -- this little poppyseed  who even now is kicking my butt -- is a reason to celebrate and hope for the best.

Giving Thanks Like Eliezer

The man bowed his head and worshipped the Lord and said, ‘Blessed be the Lord, the God of my master Abraham, who has not forsaken his steadfast love and his faithfulness towards my master. As for me, the Lord has led me on the way to the house of my master’s kin.’

Genesis 24:26-27 (NRSV)

No more ECMO!

Ewan Eliezer lived up to his name today. Today we saw God's grace (Ewan) at work, and today we saw first-hand that indeed, God is my help (Eliezer). We knew his name was no accident.

Anyone who doesn't believe this day lives up to the fullest definition of "miracle" needs to have been here the past 12 days. Repeated echocardiograms and other tests showed that Ewan has one of the severest forms of Tetralogy of Fallot that they've ever dared to operate on. If his pulmonary arteries had been any smaller, we probably would have heard the dreaded words: there is nothing more we can do. Then there was the scary day in the cath lab -- the day where our sweet boy was sent into emergency surgery and we were told he had about a 30% chance of not making it out alive.

That night will be emblazoned in my memory forever. I was protected by such an astounding peace, but remember with chills in my own blood the repeated updates from the surgeons: their faces getting longer with every update, even the most optimistic amongst them losing hope as the hours wore on. I will never forget meeting with Dr. P just after four in the morning and the giddy look on his face, the elation in his voice. He couldn't believe it either.

We came out on ECMO. This would allow Ewan's heart and lungs to rest, allowing him to stabilize and get stronger. ECMO would buy us time, but it would be a priority to get off as soon as it was safe.

Make no mistake: ECMO was lifesaving for our son. But using it is a delicate balance -- there are risks with ECMO too, especially the longer a patient is on it. After James grilled our ECMO specialist from yesterday (every day that the machine was in there, there was a dedicated specialist who ran the machine), we learned that the primary risk is bleeding. Blood thinners have to be added because of the risk of clots forming. Secondarily, the machine isn't able to mimic the rhythmic pulsations of the heart and this can result in organ failure. Thirdly, the risk of clots forming means that there is a risk of a clot going to the brain or lungs, resulting in stroke or pulmonary embolism.

As much as ECMO did for Ewan and for us, eliminating dependence on the machine was priority number one in Ewan's road to recovery.

James and I waited outside the room during the trial off today. I stood outside the room, clinging to Ewan's stuffed giraffe in one arm and furiously clinging to my rosary in the other. I prayed and prayed and prayed as they clamped the machine. Because our first trial off failed so quickly and miserably, I just held my breath. I rocked from side to side on my feet as I watched the monitors. As far as the oxygen saturation levels went (you'll also see me refer to these as "sat levels"), we wanted to land in the mid-70s to low 80s. This is a good place to be, given Ewan's anatomy.

And so we watched as sat levels declined very slowly, flirting around in the mid 80s, hanging around 80 for awhile. His heart rate and blood pressure remained stable. Even though we all had prayed and hoped for this, there was a part of me that couldn't believe what I was seeing. My eyes darted back and forth from the monitor to the clock. As the minutes ticked by, we didn't see Ewan's sat level dip below 75. That was as low as it got. Thirty minutes went by and he was doing just fine. Despite sedation, his eyes were open and he was looking around the room as if to say, "What's the big deal?"

They did an echocardiogram after the machine was clamped to see how blood was moving through the heart. A doctor came out and introduced himself to me and told me that blood was moving well through the shunt, that his heart was pumping well, and that the results were (quite frankly) surprising to him. I didn't think it would go this well! he said, obviously pleased with how Ewan was holding his own.

From a subjective point of view, it was pretty clear that being clamped off of the ECMO wasn't stressing him out. He was relaxed and in no pain, just lying in his bed and looking around.

After almost forty minutes or so of being clamped off of the ECMO, the surgeon was called in. She looked at the monitors and asked how long we had been off of ECMO. Our doctor reported it had been over half an hour. She was pleased with his sat levels and agreed: let's take him off of ECMO.

Those were the words I was longing to hear.

So we called our families and closest friends, all of them rejoicing with us, all of their hearts filled with joy. This is just one step in the long road to bringing Ewan home one day, but it's a big one. Following the surgery to remove the canulas today, both of Ewan's surgeons affirmed: this is a big and significant step in Ewan's recovery. This is one step, but it's a big one. It's a hugely important one.

And so we went to our room, and just like Eliezer did when his prayer was answered in the affirmative, we knelt, fell on our faces, and gave thanks to God. I know that not everyone that reads this blog or who cares about Ewan believes as we do. I'm really not here to try and convert anyone or hit anyone over the head with anything. But having walked this path for nearly two weeks now, I have to stand up and affirm that all the glory goes to God for this. It is simply amazing what these doctors and surgeons can do -- Lord knows we would have lost our son without them. But as severe as Ewan's case is -- as hopeless as it looked time and again -- sheer, dumb luck is not adequate to explain why Ewan is still here. It just isn't. This is a miracle in the fullest, most robust sense of the word.

Ewan is still here, and so we give thanks just like Eliezer did: on our knees, on our faces -- humbled and grateful beyond measure. God has heard and smiled upon our prayers, Team.

Even as we give thanks, we have a new Eliezer prayer, and it is simply for this: stability. Ewan's chest is still open as the doctors and surgeons want to ensure that Ewan remains stable before they close up his chest. Today, he is resting and recuperating. They are not being aggressive with him in any way, and he is still holding his own. Thanks be to God! Once he is stable for a few days, surgeons will look at closing up his chest.

After briefly acquainting us with the steps coming in the future, our doctor said: today Ewan rests, and we will celebrate. Amen to that! There are new steps and challenges that wait for us in the near future, but for now I invite you to give humble thanks with us, to rejoice with us: for this son of ours is alive and off of ECMO!!

Day-by-Day

James and I got about 6-7 hours of uninterrupted sleep. No waiting for results. No emergent situations. No pagers going off in the middle of the night. Ewan continues to sail through these hours, floating on the prayers you're sending up for him.

To call us "thankful" is the hyperbole of understatement. After a nap and some lunch yesterday, we went to the in-hospital Starbucks. We walked outside to breathe in some fresh air and soak up some sunlight. It felt like we hadn't done that in years. I can't even begin to describe the gift it is to know your child is resting easy in the arms of Jesus and his angels, as well as some exceedingly compassionate and competent nurses and doctors. At a time like this, that's exactly what we need.

And so we went to the hospital chapel, fell on our knees, and gave humble thanks to God for the life of our son. About fifteen hours before that, no one was sure that he would make it. While we know that we are far from done with this fight, we have passed a major hurdle in this first surgery. Just a little over twenty-four hours ago, no one thought we'd be this far.

Thank you, thank you Jesus!!

And so we don't look to next week or even to tomorrow, but to each moment and day as it comes. Never have we been given such grace truly to be able to live in the present.

Medical updates:
Today is going to be an important day. After morning rounds at 8 am, the medical team is going to start warming Ewan back up. After as traumatic a surgery as he endured, it is common to keep these recovering little ones at lower than body temp (91 degrees F) to ward off any chance of fever and optimize the opportunity to heal. They will gradually start warming him up a bit and slowly weaning off the support he's getting from ECMO. This will also give them the opportunity to see how blood is moving through the shunt since ECMO bypasses that right now.

We're already seeing a lot of good signs: he's been moving his arms and legs a lot, his lungs are functioning as they should -- exchanging O2 and CO2 on their own, and his heart rate and BP are perfect. Please rejoice with us in this news, and continue to pray his poor little body through this. Our little fighter needs everyone behind him!!

When I went to pump and see him this morning, the nurses had him all cuddled up with a little monkey. He was moving around enough that they wanted to give him something to snuggle. Aside from being terribly cute, I couldn't help but think about how appropriate it was. Throughout my pregnancy, I referred to him as "my little monkey."

My little monkey is a snuggler and a fighter!!

Many thanks and much love to you, Team Ewan -- keep those fervent prayers coming!!

new baby pic & a GOOD NEWS update!!

There is good news!!

Ewan @ 33 weeks (click on the pic for a larger view)

Ewan and I are both measuring normally. At 33 weeks, his estimated weight is 4 lbs 9 oz (putting him in the 60th percentile) and my measurements are exactly on track again: measuring 33 cm at 33 weeks (if you recall, I was measuring 37 cm at 29 weeks, so this is definitely a positive development). Hoorah!! For the second appointment in a row, I lost a few pounds (2 lbs since my last visit, and the visit before that I had lost about 3 lbs). Not to worry however -- this still puts my net weight gain for this pregnancy at a healthy and respectable 31 lbs, which is in the healthy range of weight gain given my height and weight. I can assure everyone (and anyone who has seen me in person recently can attest): my appetite is VERY healthy!!

(And it's good for me that I am still weighing less than my husband. Wink, wink.)

Unfortunately, the doctor we saw yesterday was not our normal doctor (ours had torn her achilles tendon and was out of the office). This other doc ordered another ultrasound to measure my fluid levels next week. I was surprised, since the amniotic fluid was measuring within the normal range. She said "the higher end of the normal range" and James and I both agreed that given the other measurements being right on track, this is something our doctor would probably not be concerned about. This experience makes us even MORE thankful for Dr. J who has promised to be there for the delivery of this baby and who we will see again next week.

I was particularly thankful because this is the first positive ultrasound experience that we've had this whole pregnancy: the pictures we saw yesterday confirmed what we were seeing at 22 weeks: Ewan has no other abnormalities or deformities present -- his heart rate is healthy, he's kicking hard, his hands and feet and fingers and toes are all normal, his lungs and all his other organs look perfectly healthy.

We're so excited to meet him!!

In other news, we begin our birthing classes at the hospital today. We were really hoping to take some Bradley method (or other natural method) classes, but couldn't find anything that worked for our schedule. I've been doing a lot of reading about natural methods and am hoping that my stubborn, stoic Scandinavian constitution and high threshold for pain will see us through so we can have the unmedicated birth we want.

I can't believe how close we're getting ...

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!

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)

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)

behold, the power of hashtags

I've had a Twitter account for awhile, but I admit I'm still not sure how best to use it. These are the kind of questions that run through my head while Twittering:

Is it redundant to tell people I've blogged? Is that annoying, or is it an accepted practice?
How in the world does anyone remember to check to see who's put an "@" symbol in front of your screen name?
How do people truly network and find other people on here?
Should I be using keywords or buzzwords for other people to find me?

And finally:
What's the deal with hashtags?

I knew they denoted a subject, and that people checking on that subject could find you that way, but I didn't know how they could be used, until today. I did one little innocent tweet about how much Ewan was kicking (which, by the way, has been A LOT today). Without really understanding why I was doing it, I added two hashtags to my tweet: #pregnancy and #CHD.

I could not have anticipated what was coming. And that's how Kristine Brite found me. She has quite the following already, and her own experience with having a baby born with a CHD. I was amazed to find such generosity and like-heartedness on Twitter!! She sent me a very sweet note and after checking out her own blog, I knew I had found someone whose support I could count on.

This connection has led to others. Simply using the #CHD hashtag has led to still more -- other mothers who, like me, are pregnant with a baby who has a congenital heart defect. Other people who, though not directly impacted by a CHD diagnosis in their own family, still care deeply and want support other families who must walk that path. It's extraordinary that in a medium where the connections made are more likely to be superficial, these are not.  It reminds me daily, in more ways than one: we are not alone in this. And neither are they.

I'm going to sound like a broken record here, but I continue to be amazed at the power of social networking. Here we were, thinking we were the only ones who had been through this at first. When we started using blogs, e-mail, Facebook, and other social networks, we crossed paths with other people who have been where we are now.

Again, amazing. Let that be a lesson to me: use hashtags. Amen.

* good news!! *

First, a little background
When we met with the doctor and genetic counselor at Children's Hospital at the beginning of June, we asked about the best area hospitals to deliver and were presented with three options: Overlake, Evergreen, or the University of Washington. They had the necessary specialization and neo-natal facilities that would allow Ewan to receive the medicine he needs after birth, and to be transferred safely to Children's Hospital.

When we met with our midwife a couple of weeks later, she told us about an OB they refer to frequently in instances like ours. She's friendly to the practice of midwifery and prefers minimally invasive practices herself when appropriate. I was so excited! The midwives love her and in my book, that was as huge win (since I love and trust the midwives). The only problem? She has privileges exclusively at Valley Medical Center -- not at any of the hospitals they told us about at Children's.

When we told our midwife about the three hospitals they told us about at Children's, she said she would check into it for us. That was the last that we (and you) heard.

And now the good part
But we figured it couldn't hurt to ask ourselves.

Today, James called and spoke with the genetic counselor that we initially spoke to at Children's Hospital (we cannot say enough wonderful things about the people we've interacted with there so far). Would it be okay if we were to deliver at Valley Medical Center? Do they have the necessary facilities and resources? After she checked with the doctor, she called us back and we found out YES, THEY DO!! It will be perfectly okay for us to work with this wonderful doctor who already has a relationship with our midwife team, who is friendly toward the practice of midwifery, and can also provide the specialized level of care that our family will need.

Given the circumstances, I am beyond THRILLED to be able to make a smooth transition from one set of capable hands into another. One of my biggest fears was feeling like I was being handled by a complete stranger. But since the midwives already have a good relationship with this doctor, I feel much more comfortable at the prospect of working with her, of having a hospital birth and being able to have the type of experience we want.

Miraculous healing aside, this is exactly what we were hoping for.

There are still plenty of details to be worked out -- nothing has officially transitioned yet since we just learned all of this earlier today, but knowing what we know now, we are well on our way. I just couldn't wait to share the news!!