On Praying for a Miracle

No parent ever expects that they will end up pacing the white tiles of an ICU waiting room while their child is in surgery. Nobody thinks that their child will be the one receiving oxygen through a nasal canula, or that their baby will be one that needs to be cut open. Nobody expects it, and everyone who finds themselves in that place hopes for a miracle. Every. Single. One. No matter who you are, it is an impossible thing to watch a child suffer with disease.

Both Rob and BreAnn are on my Facebook friends list, but it's been awhile since we've really been in touch. Rob and I were a grade apart in high school, and his father pastored the church my family and I once attended. His wife BreAnn and I worked together in the middle school group for awhile after I graduated from college and moved back home. I haven't seen them in awhile, but we now have something in common that I never expected: they're in the hospital with a critically ill child of their own. Their 9-month-old daughter Reese (born right around the same time as Ewan) is at Seattle Children's Hospital and is facing surgery tomorrow morning to remove a pair of very aggressive (and probably cancerous) tumors on her brain stem that together, are about the size of a golf ball. Maybe bigger.

Click here to read more about Reese and her journey.

When I first heard the news, I prayed to the point of tears that evolved into sobs, eventually sending me running to the bathroom where I got sick (intense emotion will do that in early pregnancy -- at least one of my pregnancies). I know something of what it feels like to face what they're facing: the scent of Purell and the beep of monitors, conversations with doctors and surgeons, a litany of medications and procedures, forms and waivers and hearing what the risks are of saving your child's life. Hearing their news took me back to a time not so long ago when James and I were facing a lot of the same things.

Before his birth when I was pregnant, my prayers were far-reaching. I begged for the miraculous. I prayed that when he was born, they would evaluate him and wonder if they even had the same baby. Heart defect? What heart defect?! This child is perfectly healthy. I knew God could have done it. I knew He could have -- at any point -- given us the miracle that we hoped for.

In the days following his birth, I had never prayed so much. Whether I was lying down or showering or pumping breast milk or standing by Ewan's bed, I prayed. I prayed for mercy. I prayed for God to let him live and thrive. I prayed that he could come home.

But somewhere along the lines in our time there, I stopped praying for the miraculous and started praying for the next small victory, or praying through the latest setback. I knew plenty of people would continue in the vein of pleading with God for the miracle, and I was glad they were. Living in that hospital, however, I had to pray for where I was at, not for where I wanted to be. James and I spent some time reading in Genesis about his namesake, Eliezer. Eliezer was a man of faith and prayer. But his prayers weren't for the grand miracle -- they were simple and they were modest. They asked something of God, but it wasn't for anything sparkly or earth-shaking. It was for the next thing, and then the next. And so we started to pray like Eliezer. Instead of praying that we would wake up one morning to find a perfect heart, we prayed that the swelling would go down after surgery. We prayed for urine output to be good. We prayed that his O2 sats might come up.

I know so many people who are praying for a miracle for Reese, and I'm glad they are. They are asking for the miracle because they have complete confidence God can do it. If it's His will, they know that the next time they scan that brain, that God could make those tumors vanish from sight.

We should pray for the miraculous, for the display of power that would leave surgeons scratching their heads, and that would have these parents toting their baby girl home for a normal life. But in our quest for the miraculous, we should also not miss being attentive in our prayers to the day-to-day, moment-to-moment realities that Rob and BreAnn face. Even though these prayers may not appear to be as grand in their desire, they are just as important and are miracles in their own right when granted. I haven't spoken with them, but based on what I've read from BreAnn and from my own experience, this is what I'd be willing to bet:

• They are beyond tired. They spend every moment they can by their baby girl's bedside watching her monitors, making sure she's breathing, and running for the nurse when something seems wrong.
• They are living moment-to-moment. Any critically ill ICU patient's status can change in a heartbeat. Just because you have a good moment doesn't mean that things can't come crashing down around you the next.
• They are sitting down with surgeons and doctors who, though incredibly compassionate, are in the business of making sure Reese's parents are fully informed of all the risks for every procedure for which they request consent. 
• They are overwhelmed with both information and emotion and probably feeling inadequate to make the decisions they have to make.
• They are frightened of losing their little girl.

And so this is the reality that I am and will be praying for: for strength and stamina when they are tired, for the peace that passes understanding as they pace the halls during surgery, for calm, and for moments of joy and rest. Tomorrow morning, I will be praying like Eliezer and asking God to endow Rob and BreAnn (and all of Reese's loved ones) with the grace and peace adequate to their need, that the surgeons would exercise deftness and skill in the operating room, that the tumors would be removed successfully and safely, and most of all, that Reese comes out of it okay. When you've walked those halls and burned hours in those waiting rooms, both dreading and desiring updates, then you know these things are miracles, too.

Sadly, most of us don't get to see someone raised from the dead like Lazarus. Maybe we've heard of someone riddled with cancerous tumors who goes to the doctor to find out that inexplicably, all the cancer is gone. But that isn't where most of us live. After everything we went through with Ewan, I have come to believe firmly that rather than spiriting us out of the storm with the miracle we hope for, most of the time, God wants to show us that He will walk through it with us -- the miracle of His presence in the Valley of the Shadow, the miracle of drawing good from the nightmare.

I pray that these parents know that we, and He, walks every step with them -- no matter how turbulent it becomes.

Pieces

On Friday, it was five months since he died. Five months. The description of how much time has passed between that day and everything that came after seems rather arbitrary. If you told me it had been five minutes, or if you told me it had been nine years, I would have believed you either way.

On Friday, I looked at the pictures of him. I remembered his birth, his warmth, and his sweet new baby scent. I remembered stroking his hair, kissing his forehead, and nibbling on his toes. I remembered the way his skin changed when he died, turning dark and dusky as life gave way to death and I held the body that, just over two weeks prior, had been safely nestled in mine. I called my Mom from my office that day, voice cracking. I don't understand. I just don't get it. How did this happen?


And I fell apart again.

* * *

I get e-mails telling me about how Ewan's story inspired a positive change, a reconciliation. I hear about how he saved a life. These things are good and I never tire of hearing them, but there is bitter along with the sweet. These good things are born of his death and our loss.

* * *

We gave Ewan the middle name "Eliezer" after Abraham's servant in Genesis. In Chapter 24, Eliezer is sent on an urgent errand for his master Abraham: to find a wife for his son, Isaac. Eliezer journeys on camelback to Mesopotamia, to the city of Nahor where he found Rebekah, the one who would become Isaac's wife. The journey demonstrates profound faith and tremendous humility, qualities in Eliezer that we admired enough to give the same name to our son.

Eliezer's journey from the side of his master to the well where he found Rebekah was sixteen days. Sixteen days is also the length of Ewan's journey here on earth.

And as Eliezer was to depart Nahor to return to his master with Rebekah, he said: "Do not delay me. The LORD has made my mission successful. Now let me go back to my master." (Gen. 24:56)

And so he did. And so did Ewan.

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!!

Tears & hope

Yesterday was rough. It doesn't get any easier seeing him like this: chest tubes and drains, on more IVs than I've seen in my life, chest open and covered with tape. And I thought about the other families here: how for different reasons, they are walking their own paths of grief. No one really wants to be here. Everyone wants to go home, and with a healthy (or healthier) child.

My arms feel so terribly empty without him. Right now about the only parts of him I can touch are the top of his head and the bottoms of his feet. Sometimes I manage to get a little bit of his leg. I remember another heart mom saying that she kept a stuffed animal with her since her instinct was to hold and cuddle something after birth. As so I've been sleeping with a stuffed giraffe Ewan's great-grandparents bought for him. I'm hoping Ewan can cuddle it soon himself.

We're starting the day on a positive note, having heard that the lung that was mucky and collapsed yesterday is clear and sounding good today. The nurse even said she had to turn down the amount of O2 he was getting because his lungs were that much clearer. He's very negative on his fluid balance as of this morning (just over 400ccs) which is exactly where they want him to be. The nurse said he even kept peeing after they stopped giving lasix. I told her that all Petermanns are overachievers.

And so I've been praying like Eliezer -- and I know you have too. That today is the day Ewan can come off of ECMO safely. Lord, grant us success. Lord, grant us victory today. Saint Pio, pray for us. Hail Mary, full of grace ... these prayers come from my lips steadily and in a stream, one right after the other. I anointed him this morning with some Padre Pio Blessed Oil as I prayed over him. Please Lord, make his little body ready for this. I have hope that this is what the past 24 hours of our collective prayers and the wisdom of our doctors have wrought.

I have hope that, after this bit of trouble, we can have more days like this, but minus tubes, wires, and vents. Please Lord, grant us success. Grant us victory today in getting Ewan safely off of ECMO.