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.

The Rainbow

I never did write about Ewan's funeral. If the night of his emergency surgery was the longest night of my life, then this was most certainly the longest day. I drifted in and out of surreality, between wondering if this could really be happening, and the kind of sadness that had me making fists and considering taking my fingernails to my eyeballs. In and out, back and forth. By the end of the day, I was exhausted.

It rained all day the day of his funeral. Appropriate, I thought. I probably would have been offended had God permitted the sun to shine and the birds to chirp outside my window. I've endured a lot, but that would have been too much.

All morning long and all through the funeral, all through the graveside service in Seattle, it rained. It rained on me as I reached to touch his casket in the hearse, and rain splashed up against my bare ankles as I walked from the car to the graveside. Rain everywhere.

We buried him, and then we drove home. Family and close friends joined us at our apartment afterward.

I changed into my pajamas, just wanting to be warm and comfortable. As my brother and sister-in-law and a good friend of mine were out procuring food and wine for everyone there, my sister-in-law texted me.

There's a rainbow!

What?

There's a rainbow! A rainbow for Ewan, she said. She sent me pictures.

I slipped on some shoes and ran outside. Sure enough, after all that rain, enough sunlight was breaking through to make bright multi-colored beams of light across the sky.

Whenever I see one, I always think of what the first one meant: a promise never to destroy the earth with a flood again. A promise. A promise that went deeper than a mere symbol, a promise that meant life again.

Before I go on, I just have to say (and if you've been reading here for any length of time now, you have probably already perceived this) that I am not a terribly sentimental person. What I mean by that is that I don't care for cutesy explanations for hard things, that I don't like to hear things that are truly ugly made to sound pretty. Don't tell me that Ewan died because "God needed another little angel in heaven." (For the record, no one said that to me; I'm just using it as an example). Don't sugarcoat it, just give me the truth straight. No fluff.

I say all that because what I'm about to say might sound overly sentimental. It might sound like something cute someone would say just to make me feel better. But I saw that rainbow and I thought: a promise. A promise for me, a promise for us that life won't mow us down like this again. I know there will be plenty of difficulties, but maybe, just maybe I thought ... I won't have to bury a child of my womb ever again.

I dare to hope that it is true.

Nobody really knows what went wrong.

We're back on ECMO for the time being. The victory was short-lived.

Shortly after I finished writing the last post, we went to check on him one more time. He was still looking good, even several hours after being taken off ECMO. Shortly after that, he started desating -- his O2 saturation levels dropping, his heart having to work much, much too hard. It was too much stress on his body.

He's back on ECMO and stable for now. It's nearly 3 am. They told us to get some rest and we'd talk later.

We know we have some tough decisions to make in the next day or two. Barring a miracle, we're faced with the following decision: do we let him go, or do we send him back to the cath lab for a procedure that might rupture his pulmonary arteries?

The team of doctors and surgeons here is amongst the best; I have to say that they've taken good care not only of Ewan, but of us as well. I know they're doing everything in their power. It's just that his case is so much to the extreme. His case is exactly what you hope not to see (as a parent or a doctor). And now we have to be realistic.

It will take a miracle.

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.

Those Baby Blues

It's been a pretty good day -- they continue to pull back on the ECMO and he's still rocking the stats. I'm not sure if he's making enough pee to make them happy, but he looked noticeably less puffy when we saw him tonight than he did this morning, so hopefully that is a good sign. Also? His lactic acid levels are down again meaning his heart isn't working as hard as it was right after the operation. Good signs.

James and I went to visit him tonight so I could pump and we could see him one last time before we went to bed. Just after I finished, he opened his eyes. They were open for the briefest second this morning I was in there, but tonight was amazing: you could tell he's on a lot of medicine so he doesn't get uncomfortable, but he was awake. And his stats stayed stable, and he showed no signs of discomfort. Amazing!!

And yes, we got video. And yes, I'm going to share it with you. It melted my heart to see his eyes again!!

Prayer needs & short-term goals:

• They're further weaning the ECMO to 60 by tomorrow morning at 7 am. They're holding steady at about 82 right now and will keep him there until midnight, gradually stepping him down toward the morning. Please pray that he tolerates this well and that his body takes over what it's supposed to do.
• Depending on how he tolerates this wean, there may also be a one-hour trial with the ECMO clamped off to see how he does. This kind of trial is pretty standard for patients on ECMO. We would pray that he tolerates this well and that this strong boy (whose first name also means "warrior") will exceed expectations here, too.

Longer term:
I'm trying not to look too far forward into the future, but if everything goes as we hope, we're looking at the following BIG steps toward his recovery:
1) Getting off ECMO
2) Closing the chest (this changes the dynamics of his breathing, so this is a huge deal when this takes place)
3) Weaning him off the breathing tube

 Many thanks for your continued support and prayers.

GO TEAM EWAN!!

Aftershocks

It was last night at about 7 o'clock that some of the shock and chaos of the previous 48 hours began to wear off. It didn't surprise me when it came -- I knew that it would. I know that when our minds and bodies endure something like we did Thursday night - early Friday morning, that you can't possibly take it all in. You can't possibly understand and process what is happening.

I still believe that in those moments, I was protected by that peace that passes understanding. There is no doubt in my mind. But I also believe I have a human heart which, as much as it can contain, cannot contain the love I have for my son. This is part of why I share him with you -- this, and the understanding that is now as clear as a pinprick of light on a dark night: he isn't ours to begin with.

I thought about everything: How severe his heart condition is. How there was nothing we could have done to prevent it from happening. How so many people I know have had perfectly healthy little babies recently. How much my one-week old has been through in his first week of life: blood draws, transfusions, intubations, open-heart surgery, central lines, more medications running through his system than many of us have seen in our entire lifetimes. How much I love him. How much I want to hold him again, and for his daddy to hold him for the first time. How sweet and how fierce he is. How much I hope for those miraculous moments of victory, whether they come in inches or in miles. How much I understand that we're at the mercy of something over which we have no control. How much all of this throws into sharp relief how very delicate and tenuous life can be.

And I felt it all at once.

I understand that this doesn't mean a loss of hope or of faith -- in those scary moments where we thought we'd lose him, we had no choice but to live only in the moment we were in: no projecting forward, and no looking back wondering what could have been done differently. What I experienced was the dam giving way: the thing that kept us walking through the past 48 hours making those decisions that needed to be made with a clear mind. Now that things have been relatively boring for these most recent 48 hours, space was created for all those things to sink in, to marinate -- for me to have some stillness with them and to really, really feel them.

So for now, we are hoping and praying for more boring days. As Ewan's body hangs out at a warmer temperature (not quite body temp), as they slowly wean him off the support he's been getting from the ECMO machine -- we are hoping for nothing more than minor roadbumps. After you prayed, his lactic acid levels went down yesterday -- just as the doctors wanted them to. So keep praying that as his body warms, that as support is weaned, that he would handle it well -- his heart rate and blood pressure remaining stable and in healthy ranges, his body taking over for what machines are providing now.

So much to be thankful for, so much more to hope and pray for.

Video: I mentioned in an earlier post -- before we even knew that Ewan would be going in to surgery -- that I felt compelled to baptize him before we left the other night (which ended up being the night before his emergency surgery). I'm so glad we did -- I can't bear the thought of leaving that undone prior to those moments. These are BOTH the day prior to surgery.



And here's another video from the same day which is short but terribly sweet:

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!!

Miracles

Ever since we found out about Ewan's heart, I've thought about Abraham and Isaac: how Abraham received Isaac as a promise in his old age, and then how God asked him to climb Mount Moriah and sacrifice that son. God asked Abraham to hold a knife over his son and offer him up. Abraham obeyed -- he took his son and after placing him on the altar, held the knife over him. And God stayed his hand at the last minute -- the last possible second, in fact.

I not only believe, but know that your prayers sustained us last night. I have never been so completely at peace. As odd as it sounds, as much as it doesn't make sense for it to be that way, I was at peace with whatever the outcome. If we had to say goodbye to Ewan. If we got to hang on to him for a little bit longer. We've known from the start that he was really never ours to begin with. We already knew we had absolutely no control over this situation, or its outcome.

And yet I remained completely at peace. I love my son with an impossible love, but I had in my heart something I've never experienced to quite this level before: the peace that passes understanding. And it did pass all understanding. It is real. I received precisely the grace I needed for that long night as we were walking through the Valley of the Shadow of Death.

We witnessed a real, honest-to-God miracle last night. You should have seen the primary surgeon's face as he spoke with us. The word "miracle" was not used, but he was positively giddy. Even with the long road we had ahead of us, about twelve hours ago no one (and I mean not one) had the hope of us getting to this point.

It's as if God brought us to the point of complete and utter surrender, leaning fully into our faith, and stayed the hand of death at the last minute. No one knows how this will turn out. There are absolutely no guarantees as to the outcome. But for now, death did not have the victory. We are here. Ewan is stable and very boring right now -- all things considered, we're not only hanging on -- things are looking good.

Taking it hour by hour, minute by minute.

Thanks be to God! And please continue to pray.