30 September 2010

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.

29 September 2010

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)

28 September 2010

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.

26 September 2010

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:

25 September 2010

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!!

24 September 2010

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.

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.

23 September 2010

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.

22 September 2010

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.

21 September 2010

Learning Curve

Notebook at the ready, James and I have been busy asking questions and taking notes, talking to both doctors and nurses about Ewan's condition and care. Truth be told, James is far better at the whole question-asking thing than I am. When doctors ask if I have any questions, I tend to get a blank look on my face and then that's when they start to explain what they think I should know.

Holding Ewan for the first time since his birth :: Sept 19

All in all, it is still the case that Ewan is doing well for a baby with as severe a case of Tetralogy of Fallot as he has. His doctors and nurses both say he's got a strong will (wonder where he gets that from?) and is pretty fierce. None of this is surprising to me, of course. :o)

You don't need to be a mama to get this :: Sept 19

When he first arrived in the NICU where we delivered, he was breathing well on his own and overall, had excellent stats and color. They put him on the prostaglandin (PGE) to keep the PDA open. The PDA is the vessel that is normally open in utero in all babies, but closes a few days after birth. This caused him to stop breathing a few times and so prior to his transfer, they had to intubate him (as hard as it is to see, we appreciate this since not breathing is obviously not something we want to mess with). The cardiology team at Children's learned through a series of scans that the PDA wasn't making a significant contribution to the overall bloodflow and oxygenation, and so they made the determination to wean him off the PGE (this happened yesterday at about 11 am). They attempted an extubation shortly after, but he experienced some significant pauses in breathing again, so they will attempt it again today to see how he handles it. He is already initiating most of his own breaths, so this is encouraging.

Sept 19

Sept 20
On Wednesday, he goes to the Cath Lab where they will take a catheter and be able to determine very specifically the makeup of his anatomy. They already know that he has a few distinct collateral arteries going to his lungs, and this procedure should determine how big they are and what kind of work they're doing. This procedure will play a significant part in determining the course of treatment.

Fingers!! :: Sept 20

In other news, he also got a blood transfusion to keep his red blood cells up (we like those oxygen-carrying red blood cells!!) and he got his first feeding, which we were there to see. So awesome! I've been pumping every three hours (with a lapse or two for sleep) since the day he was born, and it was just so awesome to see that even though he's not inside me anymore, I can do my part to nurture and protect him.

First feeding :: Sept 20

I always knew it would be hard to leave him there: to see him hooked up to the tubes and wires, to need help and permission to be able to hold him. Even though I know this sweet boy came from me, even though I was so very present for his arrival, I look at him and have a hard time believing he is ours. I look at him and can hardly believe that God entrusted him to us as his parents: this sweet, eternal soul. The feeling of being this child's mother was already so overwhelming to me when I was pregnant (in a good way, as in: I've been honored with this child), and is a thousand fold more so now.


I know days are coming when we have big decisions ahead, and it's no wonder that we're tired. I haven't gotten any significant stretches of sleep since giving birth and of course, there's the emotional side to all of this. So I'm going to go back to bed for a few more winks, and then go and see my baby.

Sept 20
Much love and many thanks to Team Ewan!! We love you -- please know that we feel your love and prayers, and that even if we're not responding right away (or at all), we're getting all your comments, notes, and lines of encouragement. It is the hyperbole of understatement to say that means a lot.

All snuggled up :: Sept 20


Much love,
the mama

Tired mama :: Sept 20

20 September 2010

Ewan's Birth Story

I won't lie: it's a long one I wrote here, and it's probably full of grammatical errors of which I would normally be ashamed -- but since I just had a baby, I'm giving myself a pass. Just letting you know ahead of time!

* * *

I wrote recently about how my blood pressure had been climbing fairly consistently at my doctor’s office visits. And I wrote about how I knew it was related to anxiety attending what was waiting for us, but that our care provider decided to run some tests anyway – just so there were no surprises. I was sent home with a prescription for blood pressure medication and we were scheduled to follow up with a non-stress test at 3 pm on Friday, September 17 so they could see how Ewan was handling me being on the blood pressure medication. I got a call from the doctor’s office in the middle of my work day on Thursday, September 16 that I was to go home and be on modified bed rest (lying down or sitting).

At first I was upset, and then I decided I’d make the most of it. I slept nine and a half hours that night. I woke up without an ounce of tension in my whole body. I joked with James that they should try and take my blood pressure now – if I would even have one. I rested all the next day: reading my book, snoozing in and out of a few movies, letting James take care of me. I thought of all the things I could finish: packing my hospital bag, waiting for the arrival of those last few packages that would mean our material readiness, reading and finishing some books, relaxing before our little boy came.

As I rested on Friday, Ewan was incredibly active as usual. And as was my custom, I recognized and praised each movement, laughing as I watched and felt feet, knees, and elbows poking out of me. I could feel my anxiety mount slightly as we got closer to the time to leave for the doctor. It was so deeply ingrained in my subconscious, still; I told myself that Ewan was handling things well, having been so active all day.

After we got to the doctor’s office, I was hooked up to a couple of monitors to measure contractions, movement, and the baby’s heart rate. I was sent for an ultrasound. It was pretty obvious they didn’t like what they were seeing. The little guy that had been so active all day (and all the days before) hadn’t moved at all in nearly an hour – no flexing, stretching, or anything. The ultrasound tech didn’t need to say anything. It was clear we weren’t going to hear anything good.

When we talked to our doctor right after this appointment, and the look on her face was sober. She explained what they saw on the tests and how it wasn’t good news – how babies in utero typically sleep for 20-40 minute stretches at a time at most. She said with any other doctor, this would be a cue for an automatic c-section. She advised us to head to the hospital where she would meet us in about thirty minutes. They would monitor me there and quite likely, induce labor.

We took in a collective sharp intake of breath. Once more, we were faced with a reality we hadn’t quite expected.

This took us entirely by surprise – our little squirmer not moving at all –alarm bells going off. I took a deep breath, wanting to take it in, but not entirely able to. Why hadn’t he moved?

I trust my doctor completely and knew she wouldn’t be alarmed unless there were good cause. So we called our doula, called my family, and drove the two miles from the doctor’s office to the hospital, stopping on the way to get some food. I hadn’t packed a hospital bag – we hadn’t come prepared with anything. I had my purse and my cell phone and the clothes I was wearing. We weren’t ready for this.

I thought of all the things at home that I wanted with me: my birthing ball, all the things on my list of what to pack in my hospital bag, and at least some vague notion of who was going to come to the hospital and when and what we were going to do. Several text messages were exchanged. We had fortunately given my sister a key to our apartment when she was down for my last baby shower the week before. There was a list sitting by the computer of what needed to be packed. We sent more text messages, asking for more of what we knew we would need.

When James and I arrived at the birth center, they were expecting us, our doctor having called ahead. We were taken to our room and checked in. I put on a gown and mentally tried to prepare myself for our time there. It still felt so surreal, like this wasn’t really happening. I had been mentally preparing myself to go past the due date, and here I was getting ready to be induced two and a half weeks prior.


 Some very sweet and funny nurses came in and captured some of my information: food allergies, age, and the like. Everyone there was prepped on our story and knew what was going on. Their own ease helped me relax.

They hooked me up to the monitors again to measure contractions, fetal movement, and the heart rate. By this time, Ewan was squirming and rolling consistently again. His heart rate was making the variations that they look for and expect. When Dr. J came by to check on us, she said she would have had an entirely different assessment if she had seen this strip just the hour before when we were in her office. Pointing to the printout we were seeing at the hospital she said, This is what we want to see.

Top graph  (in blue) are baby's heart rate. Bottom lines are my contractions

 That Ewan. What a little stinker! 

She explained to us what our options were. She could send us home, seeing as the baby was obviously doing fine at this point. Her concern was that there might be a drop in activity that we wouldn’t know to be alarmed about and that they wouldn’t be able to get him out in time. That’s what my heart can’t handle, she said, choking up and her eyes misting over. The other option was to stay and induce. She would try some natural means first, stripping the membranes and seeing how that worked before we tried anything like pitocin. She left us so we could discuss, and would come back to check and see what kind of progress I might have made already.

She left the room so James and I could discuss what we wanted to do. We looked back at the monitor and the nurses pointed out I was having contractions about every three minutes, each lasting about a minute. They couldn’t believe I wasn’t really feeling anything yet. They weren’t the least bit painful, but were decently strong. It just felt like the kind of tightness you might have in your stomach when you’re sitting up in bed.

Dr. J came back to checked me several minutes later and asked what we wanted to do. We hadn’t entirely come to a consensus, but I had a deep level of trust in what she saw, in what she was telling us. I knew she cared about us and this baby. I knew she wanted a healthy mom and a healthy baby. And so we decided to stay. This was at about 5 pm.

That’s when I learned I was already 3 cm dilated and 80% effaced: decent progress for not really feeling anything at all. And look at that: I was still contracting well on my own. She stripped the membranes and we braced ourselves to meet our baby, heads still swimming in thick clouds of surreal. We called our doula again and let her know what was happening and she gave us instructions on when we should call her back: at the point at which I felt like I was going to need help.

The evening wore on little by little and eventually my family arrived with my hospital bag, my birthing ball, and the other things we had asked for. I joked through my contractions, feeling them obviously at this point, but was still comfortable enough to joke through them. They were coming every two-and-a-half to three minutes and were increasing in intensity. I updated Facebook, we watched videos on YouTube, and we waited.

I knew moving around in different positions was going to be my best bet, so we were hooked up to the monitors that would allow me to walk around, get in the bathrub, or sit on the birthing ball. I did it all, walking the halls, sitting on the ball, relaxing in the tub. I knew this movement will help bring Ewan down. The last thing I wanted to do was to be stuck in the bed.

My progress was monitored at 11 pm and 2 am. I was progressing: 4 cm, then 5. By the time I got to five, I was 100% effaced. This was good progress. This was good news. Dr. J was going to go home, but assured me she was just six minutes away and would be here to deliver this baby. By about 3:30 am, I was at 6.5 cm. Things were uncomfortable at this point and I was having a lot of back labor. James, my mom, and my sister took turn rubbing my back through contractions and we tried different positions to provide relief. We called Annie since I knew I was getting to the point where I was losing focus and the ability to get myself to relax in between.

When Annie (our doula) arrived and I was so relieved. She has such a gentle and compassionate way of taking charge. We walked, we sat on the birthing ball, we moved to the tub, I sat on the toilet for awhile. She helped both James and I. She commanded my focus and taught me helpful ways to breathe.

I had gone without any pain relief or other augmentation for my entire labor; this was my plan. I didn’t want an epidural, I didn’t want analgesics – I wanted to experience this naturally not only for my own sake, but because I believed this would be best for Ewan too. As I entered the transition phase, the contractions became stronger and closer together. I started waiting throughout and in between. I was in so much pain. Annie commanded open eyes, breathing through loose flappy lips like a horse, low tones from the back of an open throat, a relaxed body that welcomed the contractions. I was only getting a minute or so in between contractions. It took more will than I had at times to “blow that one away” and relax as deeply as I could in between.

Annie the doula!!

I could see how it pained James to see me like this. He held my hands, maintained eye contact with me, and cried with me.

Having done a fair amount of laboring on my side in the tub, we decided to get up, knowing that changing the position would help move the baby down. No sooner did I stand up in the tub than another contraction came. I held on to James’ arms as I bent my knees and bent my upper body over, breathing as Annie had instructed me. Suddenly things felt very different – my water bag (which had not broken yet) was coming out.

They told me it wouldn’t be long now. I was fully dilated and ready to push.


Dr. J was paged at about 8:00 am or so (from what I can remember), but it could be any minute. They got me back into the bed. A team of doctors and NICU nurses surrounded me, waiting. I was ecstatic with relief – it wouldn’t be long now.

The water bag had broken and we tried a few pushes in bed. I was still having incredible back labor with each contraction and bearing down to push was excruciating. My body was shaking and exhausted, adrenaline pumping through me. I got a several good pushes in that helped the baby down, but it still wasn’t happening as quickly as we thought.

Dr J finally arrived, surprised at how quickly I had progressed to be ready to push. She checked me and found that there was a small lip of the cervix holding the baby back; she explained this was common in first-time mothers and how it was probably my water bag holding it back the whole time. She emptied my bladder to remove any pillow he might be resting on in hopes of making things progress.

I was starting to feel discouraged; the pain was incredible, the contractions still stopping for only about a minute and lasting for at least as long. They had me lean over the top of the birthing ball on the bed. And then we tried  squatting – I knew this would be effective, but my body was so shaky and I was feeling so weak. I kept saying I couldn’t do this. I held on to Annie in the front, and James supported me from behind. I squatted deep and pushed hard with every contraction. We went through several this way until I knew I needed to move to the bed.

We pushed more from the bed, Annie and James and the nurses helping me hold back my legs. It took more strength than I felt like I had available. I just wanted Ewan to come out.

And then we heard his heart rate was dropping. They had put an internal monitor in to measure his heart rate more accurately, and it was clear he needed to get out. I pushed hard and felt the burning that meant he was crowning. Dr J explained she was going to use the vacuum to help him out since his heart rate was telling us he needed help. I pushed and pushed and with one extended pull from the vacuum, I could feel his head come out. And then his body.

And then suddenly there he was, on my belly. Ewan. This so-loved, prayed over, extraordinary baby. Saturday, September 18 at 9:49 am.

I was all kinds of emotions: relieved, ecstatic, blissful. Still in disbelief. Nurses took him and cleaned him up, wrapping him in blankets and putting a knit hat on his head. They put him on my chest and suddenly, all of the previous seventeen hours had been worth it. He was not as pink as a normal baby, but had good color. I touched his little turned-up nose, stroked his face and just held on to him. He wasn’t wailing, but just gentle cries like I had – maybe he was as relieved as I was.

Just born!

Annie snapped a few family photos for us. The NICU nurses took him from me after a minute or so, putting him in the isolette that was waiting to be rolled off to the NICU. James went with him, meeting my family on the way. They couldn’t believe it was him – he was alert and awake, looking cute and pink as babies do.

Annie stayed with me and held my hand as James was away. And Dr J started to stitch me up. She suspected the tearing wouldn’t have been an issue had we not used to vacuum in order to help him out quickly. But I was torn up pretty good – third degree tears in multiple places. I really didn’t care.

I was suddenly so shaky and cold as I came off the adrenaline. Annie held my hand and told me what a good job I did (even though I had been wailing like a banshee for the previous two or three hours), how strong I was, and how perfect he looked. Dr J took her time stitching me up. The nurse hugged and congratulated me and it was just the four of us. For that hour or so, it felt like a perfect little tribe of women who had stayed with me through that, reminding me that I could do it, that I was meant to do it, and that I would.

And I did.



James eventually came back with pictures and stats: 6 lbs, 7 oz and 18.5” long. Beautiful and perfect. Dark hair with a little curl in it. Eyes wide open. Breathing well on his own. Stats looking absolutely perfect.


Visiting him in the NICU


We later found out that after doing a thorough examination, everything but his poor little heart is absolutely perfect: lungs are strong and healthy, liver and stomach and kidneys are working and in the right places, good bowel sounds (and movements). Tracking right in the middle for all his measurements except his head, which was greater than the 90the percentile (the better to hold all those brains in). 


A few other facts not included in the story:
  • My BP was measured periodically throughout labor. It was consistently in normal ranges, one time measuring even 117/68. I think that at its highest during labor, it was 133/80. On Friday afternoon at the doctor’s office (after we obviously knew we were getting bad news), it was 158/100. 
  • From the time we were admitted (and I had no idea I was in labor yet) to the time Ewan was born was about 17 hours. I’m told this is “quick” for a first-time mom, though the last several hours (from transition on) felt like 17 days.  ;o)
  • No pitocin taken or required! We found it simply miraculous that because my BP had been high in the doctor’s office, they took care to put me on medication and see how the baby reacted to it. The lack of his movement would not have been detected when it was, and we would not have known to go to the hospital. Baby Ewan was telling us he was ready to go. 
  • Labor started totally on its own. I was already having contractions that were moving things along. Stripping the membranes sped things up, I’m sure. But it really was baby Ewan’s time to come. I feared being induced, but just as I had hoped, I went into labor on my own anyway. 
  • I had no pain medication of any kind for labor and delivery. Believe me, I can hardly brag about this, because in my mind I was begging for it – screaming out to God and whoever else would listen about the pain, about how tired I was, about how I couldn’t do it anymore, about how I wanted that baby out. I never actually said anything explicitly about being given drugs or an epidural, but I was thinking about it (back labor is hell). As much as it hurt, I’m glad now that I didn’t. I learned that yes, I could do it. 
  • I think you already know this, but I really love and trust our doctor. She guided us through an incredibly difficult time and showed us a lot of love and personalized care. Lord willing if we should have another baby, I would seriously consider seeing her again and opting for a hospital birth (though she did say there is no reason I couldn’t have an out-of-hospital delivery for my next baby), just so she could take care of us again. She is nothing short of amazing. 
  • Annie the doula was worth every penny and more. Dr J said it too, and I will add as emphatically as I can: (in my humble opinion) every pregnant woman should have a doula. I know for a fact I would not have made it through labor and delivery naturally were it not for her. She was tremendous, and obviously meant to do exactly what she does.

19 September 2010

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