Room to Breathe

It feels like we don't really have any (breathing room, that is). We don't have the luxury of a lot of time, or of waiting until we feel rested and rejuvenated and before we make any big decisions. We do have a lot though: we are well-loved and supported, and we both know we are empowered and graced to make the best decisions for our family even in a time as impossible-feeling as this.

I'm simply astounded by all the messages of love and support we've been getting. I'm getting e-mails from all over the country and the world -- from people who are local and people who live across oceans. From people who have added our family to the prayer chains at their churches and organized prayer groups focused on prayer for our family on a daily basis. I see these messages and I comprehend them, but I just can't take it all in right now -- it can't quite sink in. I'm astounded and humbled at how many people love this child, who are pulling for him, and want the best for him. One day, I know it will hit me. And it will be too much in a good way.

I wish I could get back to you all. In the absence of my ability to do that, please know that I read every single e-mail and every single comment. They are getting to me, to us. I want you to know how much we cherish that, even if we aren't able to express that to you directly.

As we reach a critical point in our decision making for Ewan's care, we will be pulling away a bit from regular updates and social media in general. We will still be receiving messages if you want to send them, but for now our energy needs to be focused on the needs of our little boy. We just need that little bit of extra room to breathe.

I was so thankful that our priest could come tonight -- to talk with us, to pray with us, and to anoint Ewan. There was something very comforting and heartachingly beautiful about the whole thing. I've always known Ewan belonged to God first and that even in the best of circumstances, the children we bear are never really ours to begin with. What I saw and experienced tonight reminded me of that in a very poignant way that both pierced my heart and comforted it.

It reminded me of this: that even if the number of Ewan's earthly days is shorter than we would like it to be, that's not the end of the story. Not even close.

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!!

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.

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.

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.

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.

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

Inside-Outness

I wanted to thank you all for the love and support you gave in response to my last post. I know that amongst friends, it hardly needs to be said that what we're facing goes far beyond having "bad days" and is much more than just taking a few deep breaths can help. While there is perspective to be gained, it is only by walking through incredibly deep pain -- the types of waters no one passes through willingly.

There are a lot of heart moms out there who I know from the depths of their being can resonate with me, who can say "I get it" and really, really mean it. And even if you haven't faced something like this, you see how much this can hurt: how impossible it can feel and how entirely out-of-control, not to mention how very small and frighteningly vulnerable a person you can feel in the face of such obstacles, especially when people are saying: this is do-able, you can handle this. All while you are still in a puddle on the floor.

I still maintain: No, we can't. We cannot handle this. Even a good day like today, I refuse to pretend that that is the case. It is not in either of us -- within the realm of our own ability -- to "handle" this. I cannot imagine that it exists in the realm of ability of any parent. If we could handle this, we wouldn't need God, and we wouldn't be turning to Him in every moment of every day seeking the grace, wisdom, and strength we need to make the decisions we need to make in order to parent this very special child as well as we can. And His directives in this regard aren't always clear -- there is not always one path that is more clearly marked out than another, even when it comes to the moment in which a step must be taken.

I can't tell you how much it hurts to hear someone point your eyes toward a future nobody knows and say things like it will be okay, or you will get through this when the reality is that in that present moment, you really feel like you might be dying and are, in fact, quite surprised that it hasn't killed you already. Now is what we have to deal with. Now is what I'm having trouble getting through. Hitting the fast forward button and imagining a future where my excruciating present is my distant past of unpleasant memory is simply (in moments such as I've had lately) inconceivable.

Perhaps this all sounds a little dramatic, or like I'm too much given to exaggeration. I'm not bent on proving otherwise to someone who might believe such a thing, but I will say this: though my first child has not yet been born, motherhood has turned me completely inside out. Once upon a time, I was a woman convinced she didn't want to have children. And now I'm pregnant with a child for whom I would do absolutely anything. If it's for Ewan, it doesn't matter how scared I am, how embarassed I might be, how worried I might be about inconveniencing someone else, how vulnerable it makes me, or how much energy it takes -- I'll do it.

I am and will be ferocious for his sake. It's such a mystery to me, but entirely natural at the same time. And I embrace it.

The day her last nerve died.

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

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

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

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

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

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

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

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

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

"Before the Morning"

My sister sent me this song because she said it made her think of us, and what our little family is going through right now. Anyone who has struggled through times that took you beyond the ends of yourself can relate, I'm sure. That's just about everyone, isn't it?

I trust there's a reason for all of this. I trust that the pain we feel now, the struggle we engage with now and all that it entails, is not in vain. I have confidence that God is going to use the life of this little one in a powerful way.

But when it hurts like it's been hurting lately, it just feels like pain. When it is ONE THING AFTER ANOTHER it feels impossible with impossible on top, served in a big steaming dish of impossible -- like there's no way we can wake up one more morning and face what we have to face.

There's a lot more I could say, but enough from me. Here's the song already:

Before the Morning

Josh Wilson

UPDATE: All my sister knew when she sent me this song was that Josh Wilson had written it for friends. Thanks to the heart moms out there for letting me know just HOW perfect a song this is. He wrote it for friends of his who had a baby with Hypoplastic Left Heart Syndrome (so of course, I've already sent this to Jill). Thanks to Joye for the link!

Here is the backstory:

The Waiting Game

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.

Elizabeth Stone

It was 12 weeks ago yesterday that the Tetralogy of Fallot diagnosis was confirmed at Children's Hospital -- for 12 weeks now, we've known this was coming. For 12 weeks, we've been preparing and waiting. With 6 more weeks until our due date (and no signs of early labor, despite what the general public may think) and no reason to expect that he will come earlier than that, that means there is more waiting to do.

Waiting. And ... waiting.

That's where we are right now: just waiting -- waiting for the time when it's right for Ewan to be born. Like any expectant parents, we are over-the-moon excited to meet this little guy. I can't wait one day to get to kiss and cuddle him, to see his face, and find out if he has my nose or his daddy's hair. His spunky in-utero activity gives us glimpses into his personality. I can't wait to know him outside the womb.

But any heart mom who had the advantage of finding out ahead of time knows that this waiting period is bittersweet: the day I get to meet him -- the day I've anticipated since I found out I was pregnant -- is the day it will get tough for him. He's in such ease now: warm and well-fed, growing and kicking away. But when the time comes for his birth and first breath, this will be the beginning of his struggle to live and thrive -- when we find out what kind of heart story he's going to have, when we watch, when he fights, when we entrust him to an amazing team of doctors and surgeons and ultimately, to the Providence of God.

Waiting and wondering. Praying.

As I see other heart stories play out, I cannot help but wonder about ours. I immerse myself in details, familiarize myself with the ups and downs of the families waiting on their little fighter babies -- following stats, praying for functioning kidneys. Like them, I can only watch and pray. Just like they did, I have to wait until it is time. And just like they did not know, we will have no idea until the story plays out before us what will happen in the days and weeks immediately following Ewan's birth.

And so I find that within myself I hold the tension of two equally-weighted truths: I can't wait for him to be here, and I want him to stay in there for as long as possible, shielded and protected.

I know the waiting will be all worth it. I know it's necessary. And I want to give that time to him.

Every day I wait is a gift -- another day we are connected, where I get to feel his movements (which have been hard and frequent lately), where I can play a role no one else can play in sustaining his life. I need to remember to breathe through those times where I get anxious about what hasn't happened yet and where I attempt to imagine what nobody can know. I'm finding it increasingly difficult to live in the moment, even though I know that this is what is best for the both of us.

I know that one day soon, my heart will be walking around outside my body.

Our heart story (is just getting started)

Stefenie is holding a special blogging event today to bring together the stories of many heart families. Click on the icon above to see more.

I hardly know where to begin, since there are so many places we could start:

January 25, 2010: The happy day we found out we were pregnant with our first baby

That moment three or so weeks after conception when, unbeknownst to us, something went terribly wrong with the heart

The 20-week ultrasound on May 19, 2010 where we first heard the words "congenital heart defect" and "Tetralogy of Fallot" -- hearing abortion suggested

The fetal echo on June 1, 2010 at 22 weeks where it was confirmed -- hearing abortion discussed again

The 12 weeks between the fetal echo and now as we've done our best to anticipate and prepare in what ways we can

In some ways, this story hasn't really started. Very important parts of our story remain to be written -- it isn't time yet. Ewan is still swimming happily inside me, his repeated kicks and prods assuring me that he's doing quite well in there. I'm torn between desperately wanting to meet the baby boy that makes me giggle with his squirms, rolls, punches, and kicks, and wanting him to stay safe inside there forever. I know I can't do that.

I don't know yet what it's like to sit and wait for a baby in surgery. I don't know what it's like to count the tiles as you pace the floor. I cannot relate to watching monitors with numbers changing, to tracing the pathways of tubes and wires with your eyes, to feeling so helpless as watch your little one fight for his life.

But barring a miracle, we will know. We will know that path soon enough. And we need other families who have been there to walk with us -- sit with us, wait with us, cry with us, and hope beyond all hope with us.

For more on our story thus far, click here.

here comes the weekend!!

And thank goodness!! I thought it was Thursday three days in a row this week. I will let you do the math, but I was only right one of those days. That's just the kind of week it's been.

I can't believe how close we are to meeting this little guy: 53 days until I'm 40 weeks ... but if I'm any judge of his personality, he will be the one to determine the time of his arrival -- not some little baby calendar!!

mama bear (self-portrait) by kirsten michelle (12 august 2010)

So much of our anticipation of meeting him, at least since that first ultrasound, has been related to the heart defect: how that will affect him and our lives. We've still been enjoying all the of the normal expecting-our-first-baby stuff that you would expect, but since the initial diagnosis, we've also had to deal with the inescapable reality that (barring a miracle, of course) Ewan's first few weeks will be challenged. Our joy has shone brightly, but through a dark veil of congenital heart defects.

But this weekend, I get to focus on happy things. I intend to take a break from thinking about Tetralogy of Fallot for an afternoon, how it has and will continue to shape our lives, just so I can let people shower us with love and much-needed baby swag. I'm going back to my hometown of Bellingham for my first official baby shower (I did get a surprise one at work yesterday, so I guess this will actually be the second -- but the first one I knew about in advance), and I'm really looking forward to it. Many of the people attending have known me since I was a child!!

No doubt we will talk about Ewan's heart. I don't intend to ignore it, but I hope we spend at least just as much time adoring the belly, feeling for kicks and squirms, and gushing over teeny-tiny adorable baby boy clothing.

I know it will be so good for me to be immersed in the joy of welcoming and preparing for this child -- to remember that in spite of the tough road we know we can anticipate -- that a new life is something to celebrate and rejoice over, whether or not he comes to us with a body is ready to equip him for living and thriving. I'm hoping this weekend will continue to impress upon me the reality of the gift that he is to us just as he is. I hope it reminds me that every tear we cry, every moment we spend waiting in the NICU, and every minute we feel like we're falling apart is worth it.

Ewan is absolutely worth it.

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.

facing it

Yesterday I scheduled our second (and final) fetal echocardiogram prior to Ewan's birth. We knew we needed at least one more at about 36 weeks, and until yesterday, that appointment had yet to be scheduled.

It felt so weird on so many levels scheduling that appointment. I felt excited. I felt tense and nervous. I felt as I talked to the receptionist like I was holding my breath, letting it out in a deep sigh when I got off the phone with her.

It's so close to my due date.
He (and I) will be so big!
The doctor may see more wrong than he saw before.
There may be improvements.

There might not be improvements.
Might things be worse?

There may be a miracle.

There might not be a miracle.

As long as he's inside me and as long as my pregnancy is progressing with relative ease as so many do -- without any real hiccups or drama (aside from the obvious heart defect, which is enough) -- it's easy to imagine anything: that everything is and will be alright, that we will sail through this. This is not to say that the reality of the diagnosis has become any less potent for me, and it's not to say that I'm blindly holding on to the belief that somehow, the doctor was misguided in his diagnosis.

It's just that as long as Ewan is in me, growing and thriving, things are good. He's safe in there. He's not in any distress.

But that fetal echo has one specific purpose: it will give the cardiologists at Children's Hospital the best possible pre-birth view of what they can expect to encounter once Ewan is born. And so this fetal echo means facing it: the day Ewan no longer occupies my body, the day I can no longer shield and protect him in the way I do now. The day my heart will break a little bit more, and a little bit more again. The first day of many where I will hold my breath and wait.

This appointment means facing the inevitability of that physical separation, facing the thought of letting him go, of trusting those who are best equipped to care for his unique needs.

Deep breath.

I'm torn between the anticipation of meeting our feisty little punkerbelly, and just wanting to keep him in there forever. I don't think I will ever feel ready for that moment: the one where it suddenly feels like my heart is outside my body.

photo taken by james // processing by me

july 2010

today

Today there is no happy update. To be clear, nothing bad has happened and nothing has changed; I've just come to a place again where I'm experiencing some anger about all of this.

When I started this blog, I promised honesty. Reading this might seem a bit like whiplash in light of all the recent positive updates. Make no mistake: I still recognize how very fortunate and blessed we are given the circumstances.

It's the "given the circumstances" part that I'm battling today.

I can't totally explain or discern where this is coming from. But honesty is the policy around here: so there you have it.

Today, my heart is tired.

Today, I can't be particularly pious about this.

Today, I'm tired I've being special, of having a special pregnancy. Today, I would give anything for normal, textbook, boring. Unremarkable.

Today, I want a little fairness out of life (knowing that this is a double-edged request). I've taken great care with my physical health over the last several years: I want taking care of myself with my diet and exercise and taking the right vitamins ahead of time and never smoking and not drinking excessively and doing the right things to matter when it comes to having a healthy baby.

Today, I'm tired of feeling helpless.

Today, I want to go back to the 20-week ultrasound and hear that everything is perfectly normal, and know that it's true.

Today, I can recognize the blessing that has already come out of this, acknowledge the blessing that will come out of this and still say: Take it all back, please. I want my healthy baby.

Today, I'm sick with knowing that we haven't even gotten to the hard part yet.

Today, I want all my measurements to be normal, and not have to worry about what it might mean to be measuring too big. It could all come out even in the end, or it might not. Today, I don't want anything else to worry about. I don't want to have one more obstacle to face over which I have exactly zero control or influence no matter what I do.

Today, I just want a break from all of it.

Today, I don't want to ask for strength and grace to endure this and what will come. I just want it all to go away. I want a miracle, and I say NOW would be a good time for it.

Today, I want to go to bed and wake up in a tomorrow where congenital heart defects don't exist for me, or for anyone. I want mothers who have lost their babies to have them back healthy and whole, and for their tears to be redeemed in the present.

I'm just plain tired of today.