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.

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.

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.

A Hope & A Prayer

The Lord brings the counsel of the nations to nothing;
he frustrates the plans of the peoples.
The counsel of the Lord stands for ever,
the thoughts of his heart to all generations.
Happy is the nation whose God is the Lord,
the people whom he has chosen as his heritage.


The Lord looks down from heaven;
he sees all humankind.
From where he sits enthroned he watches
all the inhabitants of the earth—
he who fashions the hearts of them all,
and observes all their deeds.
A king is not saved by his great army;
a warrior is not delivered by his great strength.
The war horse is a vain hope for victory,
and by its great might it cannot save.


Truly the eye of the Lord is on those who fear him,
on those who hope in his steadfast love,
to deliver their soul from death,
and to keep them alive in famine.


Our soul waits for the Lord;
he is our help and shield.
Our heart is glad in him,
because we trust in his holy name.
Let your steadfast love, O Lord, be upon us,
even as we hope in you.

Psalm 33:10-22 (NRSV)

Praying Like Eliezer

And he said, ‘O Lord, God of my master Abraham, please grant me success today and show steadfast love to my master Abraham. I am standing here by the spring of water, and the daughters of the townspeople are coming out to draw water. Let the girl to whom I shall say, “Please offer your jar that I may drink”, and who shall say, “Drink, and I will water your camels”—let her be the one whom you have appointed for your servant Isaac. By this I shall know that you have shown steadfast love to my master.’

Genesis 24:12-14 (NRSV)

If you've read about Ewan's name, you know his middle name is from the book of Genesis, after Abraham's servant. We chose Eliezer because of the tremendous humility and servant's heart he demonstrates. As long as Abraham remained childless, Eliezer stood to inherit all of Abraham's wealth. But then Abraham had a son. In Genesis 24, Abraham sends Eliezer on an important errand: to find a wife for his son, Isaac (the one who would take the inheritance that could have been Eliezer's). He obeys his master, and faithfully discharges the duty of finding Isaac a wife.

Before he finds Rebekah, he prays the prayer above. His prayer is simple and it is specific. It isn't grandiose or sparkly, but modest and practical.

As much as I would love to see the kind of miracles that are as dramatic as raising someone from the dead or giving a blind man his sight, I wonder if we shouldn't be praying for Ewan like Eliezer prayed to find a wife for his master's son: simple, modest, practical. This request is for a miracle measured in inches, not in miles. And when the request is answered, we (like Eliezer) will fall down on our knees and thank God for his provision.

While we do have some long-term prayers in mind, let's try and think of the immediate needs, namely this: getting this baby off of ECMO. Yesterday's surgery resulted in an improvement in Ewan's numbers. After the cath lab procedure today (where they were able to stretch out his pulmonary arteries and the point at which the shunt connects to the aorta), the numbers were even better. But he's still on ECMO. We need to get him off of this machine. His lungs need to do a bit more work before he's ready. But I'm confident that God is able, and I know that if we storm heaven with our prayers, it will happen when it's supposed to.

Quite simply my request is this: let's pray Ewan off of the ECMO machine. In the grand scheme of things, it's a small request, but an important one. It only asks for independence from a machine. Please pray with me for this request: that Ewan's body would be strong enough to handle getting off of ECMO. It sounds like doctors want to do another trial off of ECMO in the morning. We pray that when he is tested tomorrow, that we will see that this little fighter can handle it.

Ready, team? Let's pray baby Ewan off of ECMO.

Contractions

Ever since this journey at the Children's Hospital really started for us, I have been comparing it to labor: how the valleys on this roller coaster are like the pain of contractions, and how the peaks are like the rests in between. I remember thinking when we got here that if I could give birth and endure back labor without any medication, how I could do anything, even if it felt impossible. I remembered how I kept thinking labor was impossible and how I did it -- how we got through it. And how we would get through this, too.

We've had a good few days of rest between contractions -- the first big contraction of emergency surgery and that long, long night and the rest in between: days of boring, days of ECMO being dialed down, days where Ewan was doing well, nights where we could enjoy his wakefulness.

Another contraction came today.

They did the first trial off ECMO today. Ewan didn't handle it well. I held my breath and my heart rate escalated as I watched his stats drop: his heart rate, his blood pressure, his O2 saturation levels. The numbers dipped to scary levels. It wasn't time to take him off. An echo was ordered, as was another cath lab procedure.

When they started it up again, his heart rate was up but his color wasn't coming back. They had to switch out the entire ECMO machine. When they did an echo later, they found that some pressure was built up around his heart creating resistance. Apparently, this is common with ECMO. This meant another surgery to fix the pressure around his heart. You can imagine how this felt -- the last time we sent my baby off to cath lab, it was quickly followed by emergency surgery and a very long night of wondering if we would ever see him alive again.

The day today was one big contraction.

In surgery today, they found that there was some blood built up around Ewan's heart, and this was creating resistance. They also found that he was bleeding from one of the canulas inserted into the heart that is connected to the ECMO machine. These have been repaired now and his heart rate is in a beautiful place. His pressures are higher since they have to run the ECMO machine at a higher rate to prevent clotting so they can reinsert one of the catheters that came out (see what a terrible balancing act this all is?!). This pressure build-up could very well be at least part of the reason why today's first trial off of ECMO didn't go so well. We're hoping to target another possible reason tomorrow in the cath lab.

In cath lab, they're going in to see exactly how blood is flowing through the heart. Since Ewan is already on ECMO, there's not nearly the risk of him going in this time as there was the first time. While they're in there, they're going to do another trial off so they can see exactly where any hold-up may be: to see if there's any additional narrowing in the arteries. If there is, they can place little stents that will hold the arteries open and help them expand to allow for better blood flow. This could be something else that will help us get off of ECMO sooner.

ECMO is all well and good for a time, but it's very important to note that its usefulness is very limited and tends to decline over a short period of time (just a couple of weeks). Ewan has been doing fine on ECMO since his surgery, but the sooner we can safely get him off of this machine, the better. Using ECMO has its own inherent risks that shouldn't be sneezed at, including the formation of clots when the machine is slowed down (or when they wean him down), and the reaction of the body to the plastics used in the machine. Getting him off ECMO is Goal #1. It's keeping him alive now (thank you, Jesus!), but we cannot count on this for long. We need for his heart to be able to take over, and we need for enough blood to be moving through the arteries and going to the lungs.

So we're hoping and praying for the following things:

• That today's surgery and tomorrow's cath lab will ensure that Ewan has all the best chances of being able to move blood to the lungs.
• That we can get him safely off of ECMO as soon as possible.

I am hoping the contraction is easing for now. Today is drawing to a close and Ewan is resting safely for now. Tomorrow is another big day -- our doctors are very hopeful. As I head to sleep, I rest safely in their assurance, and the knowledge that we are loved, prayed for, and watched over. God bless baby Ewan, and all those who love and pray for him.

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!!

The Endless Night

I don't know where to begin. At most, I've slept maybe an hour or two out of the past 48. Those who follow on Facebook or Twitter know that we've had an impossibly long night: from cath lab to emergency surgery that for a time had us wondering if Ewan would see the morning. The long and the short of it is: we were preparing to say goodbye.

We knew an emergency surgery situation is already at a greatly elevated risk. The head surgeon said these are the smallest arteries he's ever seen that he dared to operate on. In other words: Ewan's case is as extreme as it gets.

First shunt didn't work. Second didn't work. If the third didn't work, there was no backup. Lots of bleeding. Low O2 levels. Even the most optimistic doctor saying things aren't looking good. Family called. Chaplain called.

Waiting, waiting, waiting.

We made it through the night, but we've still got a really long, long way to go. Questions remain about the reason for fluid accumulation in the belly, about possible brain damage from the lowered oxygen levels. ECMO -- the scary thing that I dreaded being necessary -- is keeping our son alive right now. Our Ewan continues to fight, but he still needs our help.

Please continue to pray for Ewan, and for all of us. I trust your prayers guided the hands of the surgeons and kept them awake for the long fight they had tonight. I trust your prayers gave me an unimaginable peace and trust in the hand of God in all of this.

Add him to your prayer chains. Pray for him at your Masses. Storm the gates of heaven with your prayers.

We still need to be realistic about this, but I am not a deist! I trust in a God who can move mountains -- the God of the impossible. One of the doctors said at this point, a full recovery would take "a lot of luck." I think we can do better than that. How about a miracle? I'm ready for one if you are.

The day before the BIG day (we think)

Note: You can click on any of the photos below to view a larger image.

* * * * *

Today was a full day, carrying within it an extraordinary range of emotion and a lot of information, so I hope you don't mind if I keep it somewhat brief ... we're so exhausted, and tomorrow is going to be a big day not only emotionally, but for our own preparation for Ewan's medical care, so we definitely need our rest.

Shortly after we arrived at Ewan's room at the NICU, I got to hold that sweet baby again. He was just on the canula for breathing support and was free of the CPAP which I know he absolutely hated. I held him for an hour and a half -- maybe more and I think we both enjoyed it. Some of the meds they're giving him can make him a bit cranky (and we also learned that he is a boy who does not like to be wet), but I kicked into fulll mama mode: rocking, shushing, stroking his hair, rubbing his hand, kissing his sweet head. I could have done that all day.

For the most part, he stayed calm. And when he wasn't, I loved on him all the more.

Later in the afternoon, we met with the doctor who will be performing the cath lab procedure that is currently scheduled for tomorrow. He sat down with us for about an hour or so to explain to us the procedure, its importance, and what they're looking for. When we pulled out our notebook, he said he would write everything down he was explaining and then give it to us.

We went over the basics of Tetralogy of Fallot -- he explained the variations within ToF with Pulmonary Atresia, and within that all the different types of possibilities for what they could see, some far more severe than others. I'm not going to go into the technical details here, but with Ewan's specific make up, there appear to be a few possibilities, one definitely more desirable than the others -- each with varying possible outcomes. This catheter procedure is really the only way to tell.

As he explained it, the cath lab procedure is all about building a road map of Ewan's heart. What they see tomorrow will tell them where they need to go and what they need to do. Tomorrow's procedure will give a team of twenty or so pediatric cardiologists and surgeons who will use that information to discuss Ewan's specific case on Friday or Monday, and together determine an appropriate course of action.

We really appreciated how incredibly straightforward and understanding this doctor was with us -- we know this can't be an easy part of his job to talk to parents as honestly as he did about some of the possible grim outcomes of their children's conditions. He didn't pull any punches, and made it clear that he would meet with us immediately after the procedure was completed. He also said they as doctors don't perform any procedure on a child that they wouldn't be willing to perform on their own children -- and if that there was a hospital or a doctor that could do it better, that's where Ewan would go.

Some other information about the cath lab: Ewan will be sedated while the catheter procedure is done. It is expected that it will take about two hours, and the doctor will meet with us immediately after. But it is only after the team of pediatric cardiologists and surgeons meet that we will know what kind of surgery we can expect for Ewan, and roughly when it needs to happen.

It was very hard on my heart to hear all this. I look at that sweet, adorable baby and wonder how in the world something could be so wrong with him. I want to use my mama magic to make it all go away --  instead I have to trust his care to others, hand him over for things that irritate him, leave him at night when all I want to do is cuddle up beside him. His broken heart is at the center of mine.

Before we left, I asked James to baptize him. The risk of tomorrow's procedure causing death is very minuscule (0.03%), but I didn't want to get to the point where Ewan was going in for something big and we hadn't done that yet. It's definitely a comfort.

As I said: tomorrow is a big day. Please pray for us. If that's not your particular bent, happy thoughts, good vibes, and well wishes all accepted as well. It must be said: your prayers are truly carrying us. This is such a poignant and emotional experience -- I gave birth less than a week ago, and it will be some time before I'm recovered from that physically. We're both incredibly sleep deprived. We have a baby in the NICU. This is our first time doing any of it, and there isn't any road map for us as to how. Your prayers are carrying us along -- I know myself well enough that we aren't making it by our own strength. Not by any stretch.

In short, we (all three of us) need you.

The papa bear needs you.

The baby bear needs you.

The mama needs you.

Lord, have mercy on us all.

There is more than one broken heart in this room

Today wasn't even that bad. Ewan wasn't in any distress or any danger. When I arrived at the NICU, there was a lot of activity. Baby Ewan was calm and alert at first, and it was wonderful to see him without the breathing tube. One of the cardiologists was finishing up an evaluation, and they had started to do another echo to see the effects of weaning Ewan off the prostaglandin.

A happy, morphine-free Ewan when I first arrived today

More people came in and out. They were taking blood gases and Ewan sounded wheezy -- the cardiologist explained he was doing okay, but that his trachea was swollen from the breathing tube that was in. Others walked in and out of the room, checking different levels of things, looking at different medications, making recommendations. Many different people were touching him, taking care of things that needed to happen, taking care of him and helping him -- taking tape off his face, changing tubes, and so on. They put a CPAP on him today, which helps him breathe better in a way that's less invasive than a breathing tube.

Ewan has another echo -- you can click on the picture to see it better, but he's holding on to the tech's ring and pinkie fingers as she scans him

Ewan didn't like it at all.

One angry boy :: he didn't really like getting the CPAP put on

You could tell the poor little guy was stressed out. I didn't count, but I think at one point there had to be at least eight people in that little NICU room. So many people were messing with him and he was clearly angry. And so I sat there and watched as other people were helping my baby and he tried to scream or cry, but sounded wet and raspy. And I couldn't do anything: couldn't really comfort him, couldn't hold him, couldn't do anything but watch.  

Rip. My. Heart. Out. 

Mama fell into tears more than once. And again when she came home.

I wanted to see about holding him, but because of his blood gases, it couldn't happen today. So I stood by his crib, and sang to him one of the songs I made up during my pregnancy. Baby Ewan, how you doin'? ... I invited his little fingers to wrap themselves around mine. He looked at me, held my gaze. I looked into the eyes I hadn't seen since the day he was born. I made sure I was close enough that he could look into mine. I rubbed his little hand, touched his chest, stroked his hair. I wanted to hold him even more.

And after tomorrow's Cath Lab test, it will be a long time before I'll be able to hold him again. In the Cath Lab, they will inject some dye into Ewan's body and get a closer look at his anatomy to know exactly what they're dealing with. This test will tell them a lot more about the course of treatment that will be best for him.

Either way, we will be holding our breath a bit tomorrow, wondering and waiting.

A calmer, quieter Ewan

When I left, he was so peaceful. He was sleeping deeply, breathing steadily, sighing sweet baby breaths. The nurse invited me to kiss him goodbye (Wait ... I can do that?!) and I did. I kissed his sweet head a few times, told him how much I loved him, and then cried again as I left. Cried on the way home. Cried in the parking lot at Target when I found myself rubbing my belly and singing to the baby who wasn't with me anymore. Cried on James' shoulder when I got home (he couldn't go with me today because he felt like he had a sinus infection). Cried and cried, just because. Cried because everything and nothing was wrong.

If I have to leave him, it's good to do it like this: sleeping peacefully, no distress. Sweet, dreamy baby breath.

I just want what any new mom wants: to pick up my baby and hold him, to be able to do that without needing a nurse's help or a doctor's permission. I am definitely hopeful that we will get that someday -- but for now, I think I'll cry a little again and look at some more pictures of his sweet face.

Whew!!

Ewan Eliezer Petermann

Born September 18, 2010 @ 9:49 am

6 lbs, 7 oz

18.5 inches long

Mom and Dad are out to breakfast. I am sitting in my room after seeing the doctor, waiting to be discharged. James is with Ewan at Children's Hospital as they do another echocardiogram.

Ewan is here.

While it is still fresh, I intend to write about his birth story: his unexpected early-ish arrival (he was still term, luckily), and how he is doing. I will write it, but not today.

For now I will say: he is doing well. Aside from the heart defect, this baby boy is perfect and healthy. All his other organs are in the right places, the right size, and functioning properly. He's a very good pooper. His color is really good, and he's breathing well on his own. He's calm and alert and so, so beautiful. He's got dark, curly hair and the sweetest little cheeks. I knew I would be, but I will say it anyway: I'm in love.

Aside from being tired and a little torn up in places I won't talk about here, I'm doing well.  I've showered (finally), brushed my teeth, and slept more than an hour. I will post some pictures soon.

He is here. 

Thanks for your continued encouragement and prayers. This journey is just beginning, but for now there is a lot of joy and peace, and so much to be thankful for. He arrived safely. He's doing well. For reasons I will explain when I write out his birth story, he came when he needed to. And we've received the best possible care.

And we know Who watches over us.

Much love,
kirsten

Blood Pressure

I had one of my weekly prenatal visits today. Not surprisingly, my blood pressure has been steadily climbing the last few visits. I'm fairly convinced that it's within normal ranges when I don't have an appointment. We totally love our doctor -- I talked about the stress of me being the only one working, trying to figure out the financial end of things while I'm leave, being turned down for financial assistance (another story for another time, perhaps), getting closer to facing the unknown about what it will be like with Ewan and his heart once he's here -- we are certainly dealing with an above-average amount of stress.

Until that 20-week ultrasound (and even in my final two visits with the midwives, after we found out about Ewan's heart), my blood pressure was in very healthy and normal ranges -- just like it's always been (I classically fall within a few points of 105/65 or so). Ever since then, every appointment sees numbers that have been steadily climbing and today's numbers were the scariest yet. I'm not surprised, but wish I could convince those subconscious parts of myself that are in charge of these kinds of physiological responses that it's all going to work out and that there is no reason to stress.

A friend reminded me today of leaving my burdens at the cross. I wish I knew how to do that. I know the verse about casting your cares on Him, about giving up your heavy yoke, about how worry profits us nothing, and about how we can't change anything by worrying about it -- when it comes right down to it, I guess I don't know what all that really means -- how it looks in real life to do that. I can say it, I can pray it -- but how do I actually live it? How do I still deal with the things that need to be dealt with (especially those things that I cannot delegate to another), but not worry about them -- especially when we keep running into brick walls with so many of the options we explore? They all seem to be rolled up into one big, hot and tangled mess for me. I don't know how to untangle it so that I'm not carrying a big burden of worry, but also not Pollyanna-ing my way through it -- burying my head in the sand and denying reality. I want to be able to do just that and have been praying toward that end, but it has yet to bear itself out in my day-to-day reality.

So, I'm on blood pressure medication now -- humbling for the woman who's always had a BP in a very healthy and athletic range. We have a non-stress test (NST) scheduled for Friday to see how Ewan is handling it once I'm on the BP medication for a few days. And blood was taken today so they could test for anything that would point to pre-eclampsia (which, thank God, there are no other symptoms pointing to this -- just the BP). I have a very good and very understanding doctor, but we all agreed that it is going to be best to eliminate the element of surprise where we can so we can all know exactly what we're dealing with.

She was very reassuring, telling me I know I can tell you not to stress about this -- that it will all work out and that in the end, you're going to take home a happy and healthy baby. I can tell you that all of this will be worth it. It's so easy to know it here (pointing to her head), but in real life, it's hard to know it here (pointing to her heart).

Ain't that the truth?! (See why we love her?)

In other news, Ewan is still doing really well in utero. He's moving quite a lot (seriously, my belly has looked like a cartoon lately with all the feet, elbows, knees, and fists sticking out of it) and his heart rate is quite healthy in the 150s. I'm technically full-term now at 37 weeks, but he hasn't dropped yet, so it will still be some time before we see any action in that regard (thank goodness, I say). I'm glad he's as strong and resilient as he is, and am thankful for the continual (and not subtle!) movement that reassures me he's doing just fine in there.

I can completely understand why my stress level is the way it is, and why my blood pressure goes to the levels it does when I'm at the doctor. Though I wish it were different, I have to be a little bit nice toward myself in that regard too -- it would be hard for anybody to go through something like this and not see the effects of it manifest themselves in this or in other ways on their overall health. I wish I could control those things, but it's just another area where I feel so entirely powerless to change anything. I want to do better by Ewan because I know he deserves it (and really, most of the time I don't feel as hypertensive as I do when I go to the doctor lately), but the last thing I need is to pile more on to the burden that for now, I don't quite know how to cast down.

The day her last nerve died.

I need to be really honest here: I'm not holding up all that well right now. Actually, I'm not really "holding up" in any sense at all. We're getting closer to Ewan's arrival every day and there are still a host of unknowns that need to be dealt with -- questions that need to be answered, work that needs to be accomplished, and realities that need to be handled. My due date is 5 weeks (just 35 days!) from tomorrow, and we don't have the luxury of being able to take our time figuring things out.

There is much above and beyond Ewan's heart condition that is beyond our control: the dismal job market, the amount of income we receive from James' oil investments (which have taken quite a tumble recently), and when Ewan will arrive -- just to name a few. Right now, I'm the only one working, and that means that I'm the only one who can take care of certain things: maternity leave paperwork, short-term disability paperwork, making sure I have as much time off with my baby as possible (which means working as close to the due date as I can without losing my sanity).

The combined reality of Ewan's heart condition (and all that comes with that: the wondering, the extra appointments, the financial concerns, the emotional stress, etc.), James not having a job, not yet knowing how we are going to manage our financial obligations while I'm on maternity leave, the steady stream of ignorant or downright insensitive comments about my size or about pregnancy in general, having to work full time until it's time (and my job -- like yours -- has its share of incredibly frustrating days too), the general lack of free time away from work in which to check off anything on my personal to-do list, and the everyday obligations of life mean that I am and have been operating at a level of stress that doesn't leave me a lot of wiggle room in the patience/ability-to-handle-the-unexpected department. There is nothing in reserve.

And instead of getting better, sometimes it all just feels like things are getting worse.

People who know me well know what this means: everyday things -- even the tiniest frustrations and mishaps -- send me flying off the handle. Spilling food down the front of my shirt (again). Dropping something on the floor. Not being able to blow up an exercise ball by myself. Dropping my planner at work and watching all but two pages spill out. Having a paycheck that was taxed at a higher rate, resulting in about 20% less take-home pay. These are the the proverbial straws that break the camel's back -- the things that bring me to the point where I might, for example, get to my car and start sobbing, shouting unreservedly at the top of my lungs at God in all-out hysterics, telling him how desperately I need a break from all of this and how I cannot handle ONE MORE THING. You know, just like I did about three hours ago.

This is more than hormones and it's bigger than knowing how bad all this stress is for me, so I better just take a nice hot bath with some candles and chill out. I am worried about what this kind of stress could do to Ewan. I'm concerned about how this could affect what has been an otherwise healthy pregnancy (the last thing we need is an early onset of labor). I am worried about how I'm going to remember being pregnant with Ewan. While we've experienced so much joy in knowing he was coming and now that he will be with us so soon, the inevitable, implacable realities we go to bed and wake up with are starting to overwhelm and suffocate the joy out of it for me. I feel like this should be such an exciting time for us -- expecting our first baby!! -- and instead I'm finding myself filled with dread. And guilt for feeling that way.

All of it together is just too much for me to handle. I want him to stay safe for as long as possible, and I don't want my stress to hurt him. He will have plenty of challenges soon enough. If there was something tangible someone could help with I would gladly ask for it, but I honestly don't know what that would be right now.

God has taken such good care of us throughout this whole ordeal, providing even for our smallest needs, I have a hard time believing that He would abandon us in these bigger things. He knows what we need and often makes His provision known at the last minute and at the height of the impossible. But I feel so lost in contending with these day-to-day realities that comprise my present, in confronting decisions that I simply don't know how to make, in stresses and frustrations that I cannot ignore or delay or shrug off. I can't live in this place where I'm constantly falling apart. I only have a few short weeks left of being able to take care of my baby, and I don't want to screw them up.

I just don't know what to do, except say Jesus, help with every breath, and hope with every fiber of my being that our morning does not delay in coming.

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.

prayers for a tiny heart

I know that many readers here already know Jill, the fierce Mama Bear and feisty redhead expecting Baby Joshua. But I also know there are friends and family who read this blog who may not be familiar with their story.

Our introduction happened in kind of a convoluted way, though I suppose with our general immersion in a variety of social media, such connections might not be all that unusual. Thanks to some strategically timed hashtags I used on Twitter (#CHD), Kristine -- a tremendous advocate and warrior for CHD awareness -- found us and connected us. Jill and I were each embraced by this community of "heart moms" -- moms who had given birth to babies with congenital heart defects.

Jill and I connected in a special way (I think) because we were anticipating these births -- we were so very new and just becoming acquainted with the world and the language surrounding CHDs, the community, the work already being done, and so on. At about the same time, we were surrounded by a host of other mothers who had been through what each of us is about to face -- people who could relate to the unique difficulty of the circumstances we each faced at a time when it was so easy to feel very, very alone.

Jill and her family are just days away from meeting baby Joshua, who has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS for short). For HLHS babies, the left ventricle of the heart is too small or not well developed. The mitral and aortic valves are either not present, or are much too small. Additionally, the first portion of the aorta is small. Combine all of these defects, and it means that the heart is not equipped to pump sufficient oxygenated blood to the body. Like Ewan's Tetralogy of Fallot, HLHS is a very serious heart defect that will require surgery almost immediately after his birth.

Jill is scheduled for an induction at 6 a.m. on Monday, August 16 (Central Time). Though each of our hearts have been preparing for these journeys since we found out about our boys' hearts, this is the moment when it really begins -- when he no longer is nourished and sustained by her body, and these two amazing parents hand over their baby to skilled surgeons and nurses to repair his perfect, broken little heart.

I would love it if the readers of this blog would pray for Jill and her husband Shane, as well as big brother Caleb and big sister Hannah as they prepare for baby Joshua's arrival. Jill will tell you this boy is very feisty (much like his buddy Ewan), and I for one am counting on him to give HLHS a fight like it's never seen. I'm hoping HLHS won't know what hit it! Please join me in praying for and encouraging this family as they begin this journey unlike any other.

To stay up to date on their story (or to catch up to where they are now), you can visit Jill's blog by clicking on the button above.

quite possibly losing it

It was a rough weekend for me. The closer we get to Ewan's arrival -- excited as we are -- the more nervous and anxious I am becoming. And not just about Ewan's heart. That is a part of it, but that is not the whole story.

Many of you that read this blog are newly acquainted with my husband and I. To help make sense of the root of the other stresses we face, I have to tell you a little bit about how we became "Kirsten & James." We knew each other in college, but were not close friends. He graduated in 1999 and I graduated in 2000. We did not keep in touch. We became reacquainted through Facebook (I know, I know) in November of 2008. By February 2009, we were engaged and we were married about three and a half months later on May 23, 2009 -- a little over a year ago.

He was living in Kansas at the time, and I was here in Washington. We went back and forth on where we should live and ultimately decided (for reasons I won't go into here) that he would move here to Washington. He left his jobs there -- he was working with cattle on the family farm and drilling oil wells -- and we got married. And then the job search began.

And this is where we talk about the job market, the economy, yada yada yada. You know how this tune goes, I'm sure. Long story short is that after networking in variety of circles, applying all over the place, considering careers he had never considered before -- we are still looking. The income from his oil investments has been crucial to supplementing the income my job provides, but by itself, is not enough for us to live on. We never thought it would take this long.

And now I'm 32 weeks pregnant. My son has Tetralogy of Fallot, requiring surgery and an extended NICU stay after his birth. And I will only be receiving my full pay for two weeks after he's born. After that, it goes down to 60% for six weeks. And then ... that's it. We're on our own for the remainder of my leave (up to 18 weeks altogether). In different circumstances, I'm sure that 60% of my paycheck for that long would seem like a godsend. But I've crunched those numbers. It's not enough. It's just not enough.

Our options at this point are to sell off a portion of the investments that currently provide for roughly half our income, or for me to return to work much, much sooner than would be safe for our sanity and emotional well-being (2-4 weeks after the birth).

I don't share this because I want money or pity or anything like it. Really, I don't. It's just that these are real stresses and decisions that we're facing and as much hope as we've been given, as much as we've been provided for every step of the way, this is the thing that, as we get closer to our due date, has the best chance of making me come completely unhinged. If you had seen me this weekend, you would have seen it on my face.

So, if you're one of our Prayer Warriors (and we are definitely praying people here!), please, please pray for us in how best to handle this situation for our family. If that's not your particular bent, be assured we do not discriminate: your happy thoughts, warm fuzzies, e-hugs, and good vibes are all welcomed and deeply appreciated here.  :o)

Thanks, Team!


(Geesh, and to think ... some people have babies without heart defects and unemployment concerns all the time! This should be easy next time, right?)

moment of silence for baby cohen

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

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

* 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!!

baby cohen update

In an earlier post, I told you about sweet baby Cohen, who was born in Texas on June 7, 2010. He was born with a number of congenital heart defects, two of which were the same as Ewan has. He also had some others that, in conjunction with the other defects present, were very, very serious.

Baby Cohen

Photo from inthiswonderfullife.com

I've been following the blog only for about two weeks, but in that short span of time, I grew very attached to Brent and Megan's story, finding so many similarities with ours. There was so much resonance in the feelings she described, and those I experienced since Ewan's diagnosis. With thousands of others, I was praying for a miracle for baby Cohen. 

I learned today that Cohen passed from earthly life and into the arms of Jesus sometime over the last few days. I do not know any of the specifics. I grieve for them and with them, not being able to imagine the depths to which the loss of their son hurts. I also know that now is not the time for theologizing about why God permits these things to happen, or for talking about the good that might come out of this. Now is the time for tears, for hugs, and for grieving. Now is the time for prayers for these beautiful parents, who were models for us of perseverance and hope in spite of incredible odds.

Dear Jesus, welcome sweet Cohen into your everlasting kingdom. Mother Mary, please pray for these parents who fought for this child's life since before his conception. Help them in their grief, surround them with the love they need, and hold them close. Amen.