Holding the Tension

The poor baby just couldn't catch a break.

Everything that could have gone wrong, did. Every time we heard "this hardly ever happens", "this is what we see in very extreme cases", and "it's very unlikely", that was Ewan. Even the statistics that were less than 1% seemed to apply to him. To us. If there was a minuscule chance of something going wrong, it did. If there was a small chance of him not having something he needed, he didn't have it.

One important thing to realize about Tetralogy of Fallot is that there is a wide range of severity, and a broad spectrum of anomalies that can go with it. The analogy that I came up with and that our doctor agreed with was this: saying "Tetralogy of Fallot" is like saying "I'm bleeding." It could be a paper cut, or it could be a gunshot wound. Ewan had the gunshot wound kind of Tetralogy of Fallot. He had pulmonary atresia on top of it, the smallest pulmonary arteries they ever dared operate on, and no identifiable PDA (a blood vessel that is open in the heart in utero, and normally closes a few days after birth). If he had had a PDA, he might have stood a chance.

In other words, one case of Tetralogy is definitely not like the other. In other words, Ewan had a heart that was not meant to sustain his life.

Even as I am able to say honestly things like I did in my post yesterday about hope and seeing God's hand in all of this, I hold this in tension with it an unspeakably deep grief. Anger, too. Anything can precipitate a cascade of tears and sobs. Nothing at all can give rise to the same, and then there I am, on the floor wishing that I could cry even harder, cry hard enough to feel like the crying mattered.

After I got out of bed this morning, I saw the little stuffed monkey the nurses had given him to cuddle with post-operatively. He always had one arm tightly around it and was noticeably irritated whenever they moved it or took it from him as they assessed him. I lost it.

I miss him so much. I want my baby back. This isn't fair. My baby. My sweet, sweet baby!

These are the words that run off my lips in those moments, over and over and over. This is what I tell God. I will never get to hold him again. I will never feel the softness of that baby skin or the silkiness of his hair. I'm already starting to lose the sweet smell of him. Everything cries out: it shouldn't be this way.

The only moments I saw him without tubes and tape all over him were at his birth and at his death. I never got to see him without slathering my hands in Purell. Save for the moment he left my body and was placed on my chest, I never saw him without the permission of his nurses.

And now I grieve things like the fact he never got to be outside a hospital setting: I will never get to watch him sleep in his crib, dress him in the clothes we bought for him, change his diaper, or nurse him. I will never get him back, and he is precisely the one I want. Only him.

I know we are probably going to hear some well-intentioned but hurtful things in the coming days and weeks. Things about having another baby someday, about how happy he must be in heaven, and about how I shouldn't be sad because he no longer suffers. I hope I'm able to communicate in those moments that grieving Ewan (that grieving any loss, really) is not a black and white matter; it's not either/or, but both/and. I can trust that he's in heaven and rejoice in that, and I can acknowledge that we will be feeling the loss of him acutely for a long time -- probably our whole lives. I can rejoice in the truth that he is not suffering anymore, and weep bitterly over the reality that he isn't with us, that we did not get nearly enough time with him. I can be happy that he doesn't have to be sliced or poked or taped or stitched ever again, and desperately ache for him to be back here with us. One reality doesn't cancel out the other. We hold them in tension, with all the uncomfortable complexity and unfathomable mystery that such nuances create.

I miss that sweet baby boy so much. I miss how intently and knowingly he would gaze at me, not just with his eyes but with his soul. I miss his fingers curled around mine. I miss having him under my heart, feeling him roll and stretch and kick. My sweet, fierce little Ewan. You took our hearts with you.

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.

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.

Eliminating unknowns

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

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

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

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

love & light

Thank you all so much for your comments on my last post -- because of the kindness of others, I've met so many moms who have had babies with Tetralogy of Fallot, and/or survived it themselves. I'm meeting many families who have walked and are walking a path with other CHDs. It's so encouraging to know that we are surrounded by the love and prayers of so many and that we won't walk this path alone. You know what we're facing and about to face -- and I'm so thankful that you're here and have welcomed us so readily into this community.

Early in my pregnancy, I was pretty sick. I was throwing up fairly regularly until about 19 weeks. This didn't leave much time (or inspiration ... or energy, for that matter) for my photography and other creative pursuits.

And now I find I can hardly stop! I wouldn't wish a CHD on any family, but I will say that knowing about Ewan's heart has helped me cherish this whole pregnancy experience much more than before I knew -- every moment I have with him is one I guard carefully. No kick or roll or nudge goes unnoticed or unappreciated. I thank God for my sore morning hips and for the fat ankles because uncomfortable as they are, it's all because I get to love and nurture this baby in such a unique way right now -- in a way that no one else can.

All of this has been inspiring to me creatively. As much as I love them, sometimes words are wholly inadequate, and so I try to find other ways to convey how I experience my pregnancy and this special time I have with Ewan. Here are a few recent works where I have really seen this to be true ...

NOTE: You can click on any of the photos to view a larger version of the image.

bathed in love & light // by kirsten michelle (2010)

In the one above, I was feeling inspired by how much love, support, and prayer we've received since we found out about Ewan's heart and made the effort to reach out to others for help. We really have been bathed in love and light since this whole experience began, and that has made all the difference in the world.

psalm 147:3 // by kirsten michelle (2010)

This one is more of a collage: the anatomical drawing of the heart is by Leonardo da Vinci, and I added the textures and the words of the psalm. It seems so terribly obvious now that it's staring me in the face, but it was just a few nights ago that I considered this Psalm in relation to Ewan and to all the other heart families I've been meeting: so many people with incredible faith in spite of incredible odds. I thought of all of you when this came together.

fearfully & wonderfully made // by kirsten michelle (2010)

This one combines the first photo with another da Vinci drawing of a baby in the womb. I love the idea of getting a peek inside, of getting a glimpse of the little person we are waiting for.

Thanks again everyone, really. Though our circumstances haven't changed, I'm feeling more at peace about knowing that God knew about this long before we did -- and that with all the ways in which He's blessed us along this journey so far, that He will not abandon us or this baby now. He will provide -- probably in a way we couldn't plan for or expect, but I know we can rely on it all the same.



BIG heart hugs to you all,
kirsten

awareness & advocacy

I have to admit: I tend not to be a very cause-oriented person. Right or wrong, I think it's at least in part a reaction against being the type of person who once felt like I had to care about every single cause that was put in front of my face, and the truth is, it's just not possible to care about everything. You have to choose.

You and I both know at least one thing I care about now (and if you're here, I'm assuming you do, too): Congenital Heart Defects (CHDs). In fact, I've got quite the bee in my bonnet about it.

Anyone who knows James and I knows that we are educated people. We had done a lot of reading and research. We had all the books, and we were aware of a litany of things that could go wrong with a pregnancy. And yet, CHDs never came up. Not once.

Prior to learning about Ewan's heart, I had never heard anything about congenital heart defects. I had heard of spina bifida, Down's syndrome, club foot, cleft palate, and a host of other abnormalities that may present themselves in an ultrasound. There was an awareness that just about anything could go wrong in a developing baby, including the heart, but in a very back-of-the-mind, I-don't-need-to-worry-about-it kind of way. I had never known anyone or heard of anyone who had experienced this, so in my mind, it couldn't be all that common or worth worrying about.

This couldn't be further from the truth. As birth defects go, CHDs are very common. In fact, they are the most common birth defect, occurring in 1 out of every 100 births. CHDs claim the lives of twice as many children as all types of childhood cancer combined. And yet -- in spite of how common they are -- pregnant women are not routinely screened. So many of the families we've met didn't know anything was wrong until after their children were born -- and in some of these cases, it was just too late.

But enough from me. I've barely started out on this road, and I'd like you to hear from someone who has more experience. Stefenie is another wonderful and encouraging Heart Mom I've met through blogging. In a recent post, she put some good words to that vague, niggling feeling I've had about the lack of general awareness that exists about CHDs. Please read on.

"I was born with Tetralogy of Fallot"

Behold, the power of Google!

I haven't Googled Tetralogy of Fallot much for fear of what I might find. I've been very fortunate that many other heart moms who blog have also found me, some of them having babies born with Tetralogy of Fallot (ToF). I can't tell you how encouraging it's been to meet these moms who can validate every feeling and fear I've had, and also offer encouragement and hope as we get ready to face the reality of this defect in Ewan's heart.

But I Googled it yesterday, and I can't really tell you why. I was looking for more personal accounts, more stories. And I found a piece written by Adam on the Saving Little Hearts blog, someone just a few years younger than myself who was born with ToF .

One thing I've struggled with since finding out about Ewan's heart was guilt for the challenges he would face in life that so many children don't have to deal with: surgeries, medications, being a lifelong heart patient, wondering if he would be able to be as active outside the womb as he is in it. Reading this was so encouraging. This young man views his struggles as a gift.

In one of the closing paragraphs, he writes:

I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it. 

I can only hope that Ewan one day has a perspective that is similar to what Adam expresses: that this is a gift, that this brings him closer to God, that it helps him to trust God all the more. I know that's what this heart defect is doing for Ewan's parents.

Read the full piece here: 

I was born with Tetralogy of Fallot.

tiny, scary numbers & a bit about hope

According to some figures, approximately 1 out of every 100 babies (or 1%) born in the United States has some type of congenital heart defect, ranging from the mild to the severe.

Of those 1% of babies born with some type of heart defect, about 1% are born with the combination of four heart defects that Ewan has known as Tetralogy of Fallot. That's 1% of 1%, or about 1 in 10,000 (or, 0.01%). If 5 million babies are born in the United States in a given year, that translates to roughly 500 babies born per year with this particular set of defects.

The prognosis for babies born with Tetralogy of Fallot is promising, with about 90% of those treated surgically going on to live lives that could largely be categorized as "healthy" and "normal".  For some of these children, there may be certain limitations in terms of physical activity.

This means about 10% don't make it. One in ten never come home.

I know that's a number I shouldn't dwell on. 90% is a hopeful figure. When some people hear the 90% figure, they will say things like: That's great! So he will be born, they'll patch him right up, you'll wait a few weeks, and then you can take him home. I know statements like these aren't meant to oversimplify what we're going through, or what we will be going through. Those who make statements like these have said as much.

But here's what I know: we're already overwhelmingly in the minority. Ewan stood a 0.01% chance of having this particular heart defect. That means he stood a 99.99% chance of not having it, and a 99% chance of not having any heart defect at all. In other words, his chances of not having this rare defect at all are greater than his chances of making it through the treatments that will be required if he is going to live. And we already know: he has it.

And while I understand that statistically, the chances of any baby having this defect are extremely rare, carrying this beautiful baby boy who has this rare and scary heart defect represents exactly 100% of my experience with being pregnant. If I spend too much time with this figure, it terrifies me.

Those are all scary numbers. I've spent some time with them, viewing them from a variety of angles and from varying lengths: from a distance, under a microscope, from the bottom of a glass. And while some numbers offer something faintly resembling hope, none of them offer any certainty.

But here's the thing: we absolutely must err on the side of hope, and in a way that has nothing to do with these numbers. This experience will, perhaps, be the ultimate test of ruthless trust in God that we have ever had to exercise. Anything is possible. Hundreds of people are praying. We can be cognizant of the numbers without dwelling on them or placing our hope in them.

We are already pulling together a top-notch support team. We're very near a facility that employs doctors and surgeons who are compassionate and highly skilled. While these things are good and while I dare not stop doing those things I can do, while I do not dare stop surrounding ourselves with the right people (understanding that God gives us these people for a reason), our hope doesn't ultimately lie there either. We will go completely wrong if we dare to presume that any of this lies within human control.

Our hope rests ultimately with God the Father, who is merciful, good, and loving. He hears our prayers and has compassion on us. His love for this child far exceeds the love that we have for him. We ask Him now for the gift of trusting Him, because that's something we are not able to do on our own. In and of ourselves, we cannot handle this. That is certain. But what is also certain is that we know Who can. He WILL prove Himself faithful.

This is not ignorance, it is not turning a blind eye, nor is it some pie-in-the-sky Pollyanna-ism. This is not crossing our fingers, shutting off our brains, closing our eyes, and hoping for the best.

This is the faith to which we are called, the same faith exercised by the ancients who, standing face to face with the impossible, dared to believe God and His promises.

* * *

"Often trust begins on the far side of despair. When all human resources are exhausted, when the craving for reassurances is stifled, when we forgo control, when we cease trying to manipulate God and demystify Mystery, then -- at our wits' end -- trust happens within us, and the untainted cry, 'Abba, into your hands I commend my spirit,' surges from the heart."

Brennan Manning, Ruthless Trust

updates, updates

Time flies 
Somehow it seems much longer than three weeks ago that we found out about Ewan's heart. In many ways, it seems that we've traveled a million miles in the space of those weeks, and have cycled through more emotions than I knew existed.

But when I look at the calendar, it is in fact three weeks and a day since the initial diagnosis, and just over a week since having it confirmed by a pediatric cardiologist.

I haven't gone into any detail about the diagnosis for a lot of reasons, but mainly because it's been difficult to talk about or write about without ending up in a weepy mess. Another part of it is because as Ewan grows and the doctors see more, the diagnosis might vary by degrees, and we want to minimize our confusion (as well as yours) insofar as that is possible.

The current diagnosis
But now I think it's time to let you know what we're dealing with. This will help you understand what we're facing and if you're a praying person, to pray more specifically. The condition initially suspected and later confirmed by the pediatric cardiologist is called Tetralogy of Fallot. It is a rare congenital heart defect that consists of a combination of four defects in the heart:

Ventricular-Septal Defect: This means there is a large hole between the right and left ventricles of the heart. This creates a situation where oxygen-poor blood is mixing with the oxygen rich blood.

Pulmonary Stenosis: A narrowing of the pulmonary valve. The pulmonary artery's function is to carry blood away from the heart and to the lungs to be oxygenated. In a normal heart, the aorta and pulmonary artery are the same size. In Ewan's heart, they had difficulty even finding the pulmonary artery on the first ultrasound. The fetal echo at 22 weeks showed a very small pulmonary artery.

Right Ventricular Hypertrophy: A thickened right ventricle. The right ventricle wall is thickened because it has to work extra hard to get blood through the pulmonary artery.

Overriding Aorta: In a normal heart, the aorta leaves the heart from the left ventricle. With an overriding aorta, the aorta is leaving the heart from right over the ventricular septal defect.

You can read a little more about Tetralogy of Fallot and its treatment here from the Seattle Children's Hospital website. It is a short page, but does a good job of explaining things without overloading you with information or medical jargon. We will have at least one more echo before Ewan is born so they can get as good a look as they can at anything that might have changed, but right after his birth is when the cardiology team at Children's will have the chance to assess the extent of the condition and develop a battle plan.

Our plan, or what there is of it
We had an excellent meeting with our midwife this past Tuesday. I was anxious and tearful, so sure that this would be our last time seeing them. For the first half of my pregnancy, I was looking forward to giving birth in their birth center. But given the diagnosis, I was under no illusions about Ewan needing to be born in a hospital. During our time together, she did an amazing job of reassuring us about how fortunate that we are in our close proximity to Children's Hospital in Seattle.

She also provided the assurance that this did not mean we had to give up on the kind of birth we wanted. Wanting to make things as easy on us as possible, we decided to schedule our next prenatal appointment there. In the time being, she is going to pull on some of her resources to see who some good candidates for our doctor might be. This was a load off my mind, as I didn't know where to begin and given our already stressful circumstances, didn't want to have an argument with my doctor about having sought the care of midwives for my pregnancy.

Based on our understanding, there are some restrictions as to where we can deliver (having to do with the neo-natal services available at these hospitals) and the provider to whom the midwives would normally refer us (without hesitation) has privileges at a different hospital in the area, and we aren't sure if they have those resources available. We expect to hear in the next week or two so we can begin interviewing doctors and find the right person to round out our prenatal care and delivery team.

I can't tell you how reassuring it was, not only to be assured of the skill of the specialists and surgeons at Children's here in Seattle, and the ability still to have the kind of positive birth experience I want, but also to have our emotional responses to this experience validated. For the first time since this all started happening, I said out loud THIS ISN'T FAIR. She may have even said it before I did. Even though it doesn't change a thing, even though we had been assured multiple times this was not anyone's fault, it was incredibly cathartic to say it and to have it affirmed. I could cry openly and instead of looking down at a chart, she came closer to us, handed me a box of tissues, and put her hand on me. When I told her about how offended I was at how quickly references to our child went from "your baby" to "the fetus", and how many times "terminating the pregnancy" was mentioned, she affirmed it: No. This is your baby. This is your bean. You are already a mother. This has so much to do with why I adore this team of midwives.

In other news, we've also contracted a doula. We love her already! Annie is going to be a tremendous asset to both James and I. Before we had even officially signed a contract with her, she was offering us solace and reassurance, and offering a practical level of support that I just didn't know existed for expectant parents. If we want, she will go to appointments or tests with us -- whatever we need. She's just a phone call away.

So, that's about where we're at right now: waiting, but moving forward. While far from ideal, we are in a very good place all things considered.

Questions
We have gotten a few questions about all this that I thought I would answer here.

Do you need to have a C-section?
At this point, there is no reason to expect that I won't be able to labor and deliver as normal and have the natural, vaginal birth I want. We aren't sure how much monitoring will be necessary during labor. As long as Ewan is receiving his support from the placenta, he's doing just fine from a growth standpoint and in every other respect (especially a kicking standpoint, let me tell you). We are also very fortunate in that no other defects are visible -- fingers, toes, eyes, nose, mouth, spine, and all other major organs are looking just as they should. And even with a defect, he still has a healthy heart rate -- at our visit two days ago, his heart rate was in the 140s.Way to go, Ewan!


What's going to happen once he's born?
Once Ewan is delivered and is no longer receiving his support from the placenta, he's going to need to receive a medicine almost immediately that will keep the PDA open (this is a vessel that is open when the baby is in utero and normally closes a few days after birth). This will allow help ensure that the blood can flow as normally as possible, giving the doctors a chance to get the assessment of his heart that they need and develop a plan for his treatment. We've been told to expect a series of operations, the first occurring within a few days of his birth and extending through early childhood as the heart grows. We've been told to expect that this initial hospital stay will last 4-5 weeks.


What can we do?
Pray. Pray, pray, pray. Your notes of encouragement, even in those moments when you don't know what to say, also do much to bolster and buoy our spirits. We're still looking into the financial end of things, not knowing what our expenses will be. We're looking into all sorts of options in this regard, and have already had offers from people willing to initiate some fundraising if need be. We're also waiting to hear back from the hospital and the insurance company as to what we can expect.

We now have a page on Facebook for those supporting, encouraging, and praying for us. Click on the image below to join Team Ewan. My goodness, this child already has a Facebook page and he's not even out of the uterus yet!

I've also started a Team Ewan blog that will be totally dedicated to Ewan updates leading up to and after his birth. There will likely be some overlap between lattes & rainy days and this one, so please don't feel the need to check both.

That's about it for now, I suppose. This mama is pretty tired, but know that I send my love and hugs to you. God bless you all!

much love,
mama k