The Last Anniversary

When I was pregnant with Ewan, my due date was October 5 -- my Dad's birthday. James' birthday is on October 8, so when we determined what Ewan's due date was, there were several animated family discussions about whose birthday he would share, and how I should keep my legs crossed should labor start too far in advance of the desired date.

But Ewan decided that he not only wanted his own birthday, but his own birthday month. So when I was just a few days shy of 38 weeks pregnant, Ewan made his grand entrance on September 18.

With Ewan's funeral on October 9 last year, we all forgot James' birthday (including him). Our son died the day before his due date, and his funeral was the day after his daddy's birthday. These were two of many truths about our loss that grated against my grief. What should have been days of celebration became days of bereavement packets and funeral preparations. 

That made celebrating James' birthday this year really important to me -- not just to remember it this time, but really mark it as something special. Though his birthday last year was the eve of the day we buried our son, we couldn't allow sadness to have the final word.

And so this last anniversary passed not with the same tearful memories that marked the day we said goodbye to Ewan, but with what I remember feeling just the smallest seed of on the day we buried him last year: acceptance. There wasn't a lot of it there at the time, and a year later, I still have plenty of room to grow where accepting all of this is concerned (I still have days where I cry and beg God for my baby back). But it was just enough that on his birthday this year, we were able to celebrate James with chocolate chip pancakes and cupcakes topped with Fruity Pebbles, with a dinner out, and a ridiculously hilarious night at the theater to boot.

I imagine that as these anniversaries approach again and again throughout the years, that there will be tears as we remember and acknowledge the significance of things that happened in years past. That will never go away. But October 8 this year was all about celebrating life again, of accepting without bitterness what has already happened that we cannot change, and of making sure that we are intentional in marking those things truly worth celebrating.

Happy birthday to the man I love: my best friend, the father of my children, and the one without whom life would be a bland and boring Fruity Pebble-less cupcake. I love you.

* * * * *

There is still plenty of time to submit names and share the link for the Say Their Names project. Names will be accepted through 3 pm (EST) on Friday, October 14. No name will be overlooked!

2010

What a year it's been.

January 25, 2010 :: We find out we're having a baby.

It has spanned both the heights of joy and the depths of sorrow. Any time I'm tempted to think it was all horrible, I remember the face of that sweet baby boy and how he was mine for a little while.

 My goodness, how inseparable beauty and pain are sometimes!

I don't even know what to hope for in the coming year. No doubt it will bring its own challenges, but I sure hope it won't hurt quite so much as the events of this year did. I hope the coming year is gentle with us. Quite frankly, I hope we get a little bit of a break from the gauntlet that was 2010.

And I hope that we will laugh and smile again -- or at least more often.

Photo by Jen Fox Photography

Best wishes to you for a happy and healthy 2011. Wishing you peace, hope, and much love.

Thankfulness

Words are hard to come by today. Thanksgiving is here, kicking off the holidays and with it, family get-togethers where it will be all too apparent who is not there.

a grateful mama

Several friends and acquaintances have either had babies recently or announced pregnancies. Seeing or hearing these announcements was not difficult for me at first, when shock protected me from the worst of the pain. But that has changed. I want to be happy for every one of them, I genuinely do. And it's not the case that I wish any of them anything but healthy, uneventful pregnancies and perfect little babies.

It's not even the case that their joy reminds me of what I've lost. I haven't forgotten.

But the good news prods at an open wound that is slow to heal, poking at particular nerves that cry out with the pain of what we have lost each time I hear of or see someone else's joy.

From what I know of grief, it isn't something to be gotten over. It is a burden the grieved learn to assimilate, to absorb into who they are, and the carrying gets easier not with time, but with practice. And so I am practicing. I am resigned to the fact that there always be a part of me weeping over a small plot of earth where a little body -- one who had left mine just three weeks prior -- was buried.

I will always be sad that he's gone. But today, instead of focusing on the fact that he died, I choose to focus on being grateful that he was here. I am thankful for the boy who was nothing like I expected, but everything I wanted; who was as tender as he was fierce, who loved as hard as he fought.

What are you thankful for today?

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!!

Eliminating unknowns

Thank you so much, heart moms, on your tips and advice!! I can honestly say that those are some of the most practical, helpful, and nurturing bits of advice I've gotten. I know your previous experience will help us navigate the crazy territory we're about to enter into. I know your wisdom was hard-earned, and I'm so grateful for it.

The biggest and most important unknowns are ahead of us and entirely out of our control, but we are doing what we can to eliminate what unknowns we can. We've arranged to take see the NICU at Valley Medical Center (the hospital where I will be delivering) and on Thursday, we will be getting a tour of the NICU and cardiac area of Seattle Children's Hospital. I know just having the visuals and something of a sense of familiarity when all this really starts happening will help us adjust more quickly and provide the best care for Ewan that we possibly can.

My emotions continue to ride one incredible roller coaster as we get closer and closer to Ewan's birth and all we can do is anticipate. Ugh. I know all we can do is pray and wait.

And just a reminder about my "Virtual" Baby Shower. Unlike other normal baby showers, this one isn't about baby swag so much as it is having a tangible reminder of your encouragement and prayers to keep with us, and one day (Lord willing) to share with Ewan when he's older. Click on the button below for details.

showered

It was an amazing weekend -- busy, hot, and steeped in lots and lots of love. Kaari (my sister) did an amazing job of pulling the event together. There was plenty of fun, laughter, food, and just a good time being surrounded by people who are loving and praying for all three of us through this process.

We haven't done anything with the pictures from our "big" camera this weekend, but in the interest of sharing something visual in a more expedient manner, here's one that was snapped with the camera phone.

After I opened the gifts, I was asked to share how those gathered could be supporting and praying for the three of us. It was hard not to choke up as I described Ewan's heart defect for those who weren't totally up-to-date, the tests we still face, the anxieties and fears we have, as well as the unexpected blessings that have already come out of this.  We were prayed over, hugged, and loved beyond what I am able to comprehend or take in.

With all the activity this weekend (which started out with Kaari's 30th birthday party and ended with the baby shower), we are exhausted -- exhausted and aware of how loved and blessed we are, as well as how many challenges we still have yet to face. I have another ultrasound today and am already anxious and on-edge about it. I don't want to be, but we have yet to have a scan that's yielded happy news. And so I wonder.

And that's ususally when Ewan will squirm or let his little foot poke out. It reminds me that for now, he is well and that we will be, too.

here comes the weekend!!

And thank goodness!! I thought it was Thursday three days in a row this week. I will let you do the math, but I was only right one of those days. That's just the kind of week it's been.

I can't believe how close we are to meeting this little guy: 53 days until I'm 40 weeks ... but if I'm any judge of his personality, he will be the one to determine the time of his arrival -- not some little baby calendar!!

mama bear (self-portrait) by kirsten michelle (12 august 2010)

So much of our anticipation of meeting him, at least since that first ultrasound, has been related to the heart defect: how that will affect him and our lives. We've still been enjoying all the of the normal expecting-our-first-baby stuff that you would expect, but since the initial diagnosis, we've also had to deal with the inescapable reality that (barring a miracle, of course) Ewan's first few weeks will be challenged. Our joy has shone brightly, but through a dark veil of congenital heart defects.

But this weekend, I get to focus on happy things. I intend to take a break from thinking about Tetralogy of Fallot for an afternoon, how it has and will continue to shape our lives, just so I can let people shower us with love and much-needed baby swag. I'm going back to my hometown of Bellingham for my first official baby shower (I did get a surprise one at work yesterday, so I guess this will actually be the second -- but the first one I knew about in advance), and I'm really looking forward to it. Many of the people attending have known me since I was a child!!

No doubt we will talk about Ewan's heart. I don't intend to ignore it, but I hope we spend at least just as much time adoring the belly, feeling for kicks and squirms, and gushing over teeny-tiny adorable baby boy clothing.

I know it will be so good for me to be immersed in the joy of welcoming and preparing for this child -- to remember that in spite of the tough road we know we can anticipate -- that a new life is something to celebrate and rejoice over, whether or not he comes to us with a body is ready to equip him for living and thriving. I'm hoping this weekend will continue to impress upon me the reality of the gift that he is to us just as he is. I hope it reminds me that every tear we cry, every moment we spend waiting in the NICU, and every minute we feel like we're falling apart is worth it.

Ewan is absolutely worth it.