Choose Life

A year ago today we sat in the ultrasound room as a doctor presented us with a choice.

Since then I’ve felt, many times, that I should share this piece of our story, but something always held me back. Even now I’m anxious remembering those moments and considering how to piece together what I want to say so that this message comes across in the way I mean for it to. Please know that what I share with you is written in love but also a deep conviction of something that is so important to me.

And with that… one year ago today…

When we drove to our anatomical ultrasound I chatted with Steve in anticipation, excited to see our baby and find out whether we were adding a little boy or girl to our family.

When the ultrasound tech told us we were having another girl I laughed with happiness. I actually apologized to her because I laughed hard enough to bump her hand where she was scanning.

When she left the room saying I should walk around a bit to see if the baby would move for more pictures, Steve and I looked at each other with joy. I could instantly imagine our two girls at home, the sisters I’d always hoped for.

When she came back in with a doctor at her side my heart sank.

When that doctor looked at us with sympathy in her eyes and told us there was fluid in our baby girl’s chest I buried my face in my hands and cried.

And when we sat in another ultrasound room, in a different office, as the new specialist doctor told us that our baby’s combination of hydrops and a heart defect meant an almost one hundred percent mortality rate, we were given a choice. A choice whether or not to terminate the pregnancy.

A choice whether or not to end our child’s life.

Having already experienced what we did with Faith, we had some understanding of what the road ahead might look like. And from where we sat that day it looked like a very rough road.

We knew what a baby with hydrops could potentially mean for me physically. During the ten days I was hospitalized following Faith’s diagnosis I developed Mirror Syndrome in which my body mirrored what was happening to Faith. I began retaining so much fluid that I gained twenty-three pounds over three days. My lungs filled with fluid as well to the point of needing a chest x-ray in the middle of the night when my oxygen levels dropped too low followed by IV medication to decrease fluids and oxygen through a nasal cannula.

Not good stuff to say the least. And carrying another baby with hydrops meant I was at risk of this again.

We also knew the emotional turmoil of carrying a child who might die, and the odds they gave us for Hope were worse than what we had been told with Faith. Not to mention, Faith’s diagnosis came at 30 weeks and she was born two weeks later, whereas Hope’s diagnosis was at just 20 weeks with half the pregnancy still ahead of us.

That was the worst part for me. I had no idea how I would handle being in public doing “normal” things and looking increasingly pregnant all while knowing my baby would die. Claustrophobic is the best word I ever came to describing it – claustrophobic in my own body with no way to escape.

And here I must pause, because this choice we were offered breaks my heart.

An unborn baby is fully human. A life is a life and it is not up to us to play God and decide whether that life should continue or not.

It’s one thing to believe that. It’s one thing to say that. It’s another thing to live through it. To actually experience being there, being offered that choice.

For us it was an easy choice to make. We didn’t need time to think it over, didn’t even need privacy to discuss it. We knew I would carry our baby girl for as long as she lived, no matter the diagnosis or predicted outcome.

But how many people have sat in rooms like that one, with the weight of grief and fear and hopelessness, and made a different choice?

Try to imagine the emotional spiral of the day – from the anticipation before the ultrasound to the crushing sorrow of finding out your baby would likely die. Words can’t really express it. A tidal wave sweeping you under.

And what if you felt like the only lifeline being thrown your way, the only escape from drowning, was to terminate the pregnancy? To end your child’s life because that child didn’t have a chance anyway?

Please understand, I’m not saying we’re better or stronger because of the choice we made. I sobbed and screamed and slammed doors. I’m saying that we, as a culture, need to make a change. We, as Christians, need to show people that there is another lifeline – the only true and trustworthy lifeline – Jesus.

In situations like ours or in other scenarios where people are led to believe that ending a life is the most common, best, or even only choice, we need to be there to show them another way.

We need to stand up for the unborn children, even if they are only going to be here for a short time. In God’s book are written all the days ordained for each of us, when as yet there was not one of them (Psalm 139:16), and it is up to God alone to determine when those days end.

But we also need to be there to support, care for, and comfort the families presented with such an awful choice. Because it doesn’t end with making the choice for life, they have to follow through. They have to walk the difficult road. A road I couldn’t imagine walking without God.

And that is why I share our story. Because we were there, in that moment, with that choice, and we chose life. And maybe, just maybe, hearing our story could help someone else choose life too.

One year ago today, we made our choice. We didn’t chose to carry her expecting her to be healed, we chose to carry her because God gave her life and it wasn’t up to us to end that life. It would have been the right decision no matter the outcome.

But our story doesn’t end there…

When we sat down in the ultrasound room two weeks later the fluid that had filled our tiny daughter’s chest was gone.

When I closed my eyes and pushed her into this world early that November morning her cries filled the operating room.

When her big sister held her later that day my heart filled with joy over a moment we thought might never happen.

When I type these words late into the night I am thankful because I spent the day taking care of the daughter we were told would never come home.

When I look at her and her smile lights up her entire face I am looking at a miracle. I am looking at a life.

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*Please know this: I don’t believe God healed Hope from the hydrops as some kind of reward because we chose to continue this pregnancy. He doesn’t work like that. I know families who have made the same choice we did and their precious children are in heaven.

I don’t know why God worked the way He did, nor do I know what Hope’s future holds as she still has so many challenges to face. But I know this, as I said before, the choice for life would have been the right one no matter the outcome.

 

 

 

 

 

 

 

 

 

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He Knows Me

I thought I knew God.

I grew up learning about Him at home, at church, at camps, and through my own study and prayer. I attended a Christian college and was just a handful of credits short of a minor in religion thanks to all the Bible courses I took as electives. I knew my way around the Bible, I listened to Christian music, I enjoyed fellowship with Christian friends, I made God a real part of my every day life.

Then Faith was born and died in moments and suddenly the God I thought I knew seemed harder to understand.

So I sought Him.

I read – both my Bible and books about grief and loss from a Christian perspective. I listened to music and sermons and speakers online. I wrote through my thoughts. I prayed and cried out to Him.

And little by little I came to know Him again. To know Him even better than before. And in spite of, or truthfully because of, the loss of Faith I came to a deeper faith than I’d experienced in my life thus far.

I thought I knew God.

Then Hope was born with a rare and complex condition that will impact her for the rest of her life. A condition that required open heart surgery within 15 days of her birth and intestinal surgery at just under 4 months old. A condition that will require at least two more open heart surgeries and other interventions in the months and years to come. A condition that will most likely limit her ability to participate in things the rest of us take for granted. A condition that could potentially shorten her life here on earth.

And suddenly the God I thought I knew seemed harder to understand all over again.

But this time I didn’t seek Him. I stubbornly dug in my heels, angry at the thought of having to learn who God is all over again.

As terrible as it may sound to admit it, although I knew that this experience could bring me closer to God, could give me an even better understanding of Him, all I really wanted was to simply be happy. To bring home a healthy baby and live life the way I pictured it would be during those wonderful 20 weeks of pregnancy leading up to her diagnosis.

To be clear, I didn’t turn my back on God. I clung to Him still, like a drowning man clings to a life preserver, but I refused to open myself up to more. Maybe I was too angry or stubborn or just plain weary to try. But deep down I think I was also scared.

I am scared.

Scared of the process which, from past experience, I know can be uncomfortable and downright painful. Scared that God will ask even more from me that I don’t want to give or do or handle. Scared that learning more about Him, about how He can use all this, will give it purpose. And while that should be a good thing, I kind of hate the idea of acknowledging a purpose because it means also acknowledging that the life I imagined is forever changed.

It means letting go, and I am so much more stubborn than I realized.

I’ve been re-reading C.S. Lewis’ Chronicles of Narnia and was struck by a single, simple line in The Voyage of the Dawn Treader in which Eustace is speaking with his cousin Edmund:

“But who is Aslan? Do you know him?” “Well – he knows me,” said Edmund.

He knows me.

I don’t know Him. Not like I thought I did. But He knows me.

I have stubbornly resisted what I need to do to know Him more. But He knows me.

I will never fully understand or grasp who He is. But He knows me.

He knows me.

And right now, that is comfort enough. Even in my lack of understanding. Even in my questions. Even in my anger and sorrow and fear. He knows me.

And because He knows me, because He loves me even as He knows me completely, I will seek to know Him. I will never know Him completely, not this side of heaven, but I will try to know Him more each day. It won’t be easy, and sometimes I’m sure I will still stubbornly try to grab for control, but I will try.

Because I need Him and He knows me.

The lyrics of the song Let Me Rediscover You* by Downhere are so fitting and have become an inspiration, an anthem if you will, for what lies ahead:

How can I say I know You, when what I know is still so small?

Let me rediscover You
And breathe in me Your life anew
Tell me of the God I never knew
Let me rediscover You

Let me rediscover You
And by Your grace I’ll follow through
Reveal to me the God I thought I knew

So this is the start. These words on the page, admitting my struggles and committing to the journey of rediscovering the God I thought I knew. The God who knows me.

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*You can find the video for Downhere’s Let Me Rediscover You by clicking here: Let Me Rediscover You Give it a listen – so good!

Is it a Wonderful Life?

When it comes to Christmas movies, Steve loves It’s a Wonderful Life. Me? I prefer my childhood favorites… Charlie Brown, Rudolph, The Grinch. And a dose of feel-good Hallmark movies too.

Watching It’s a Wonderful Life on Christmas Eve became a tradition for us when we got married, though that tradition has fallen off a bit in recent years since Natalie was born. Tired parents prepping for Christmas morning and everything.

As I drove home from the hospital one afternoon this week I found myself thinking about the movie and our differing opinions about it.

Steve loves the way George Bailey’s life impacted others… that despite the hardships he faced and unbeknownst to him, he means so much to his family, friends and community. While I’ll admit to tearing up at the ending scenes myself (with everyone stepping in to help the Bailey’s and the little bell ringing when Clarence gets his wings) I always struggled with all the thwarted plans and unfulfilled dreams in George’s life.

I’ve joked with Steve before that our differing opinions of It’s a Wonderful Life reflect our differing approaches to real life, but as I thought more about the movie I realized how very true that is for me.

The struggle I have with the hardships George Bailey endures mirrors the struggle I have when it comes to hardships of my own.

Even before Steve and I were married we talked about our hopes for our future family. We imagined ourselves with three or four kids. Steve even mentioned five but I made no promises there! We both thought it would be great to have a mix of boys and girls, though I especially pictured two girls close in age, so they could know the joy of growing up with a sister and best friend like I did.

Our dreams for our family certainly didn’t include a baby who died the day she was born or a baby with a complex heart defect who would have open heart surgery at two weeks old.

While I try not to dwell on what “could have been”, it’s difficult for me to completely put aside the life I envisioned. I’ve found that even the smallest things can trigger a thought  or cause a picture to come to mind of how life would be if things were different.

Baking cookies with Natalie while Hope naps. Cuddling together – all four of us – on the couch by the tree reading Christmas stories. Nursing Hope late at night with one of those Hallmark movies in the background.

Not driving back and forth to the hospital. Not learning how to use a feeding tube, or perform CPR on an infant, or check oxygen saturation levels. Not thinking about the next surgery or the one after that or the multiple unknowns that extend before us for our baby girl.

And honestly, it’s really hard for me. I see these thwarted plans and unfulfilled dreams in my life much as I see those of George Bailey’s life – with disappointment, sorrow, and even anger.

I fully believe that God uses all things to our good and His glory. I’ve known Him long enough to trust who He is and to accept that His ways are not mine. But lately I’ve found that trusting and believing and accepting doesn’t take away my human emotion.

I trust in Him, yet still feel disappointed. I accept that He has a plan, yet still feel sad and angry that the path I imagined has veered down a road I wouldn’t have chosen. I believe He is in control, yet still feel afraid of the outcome.

I wish I could say that after praying over all these emotions I felt an overwhelming peace and comfort, but that would be dishonest. I’m still wrestling with this, still struggling with the balance of what I know and believe about God and what I feel in the here and now.

It would be nice if I could wrap this up in the style of Clarence the angel; showing how even the thwarted plans and unfulfilled dreams had meaning and purpose and putting all the pieces together to prove that it really was a wonderful life.

But I can’t…. nor do I think it’s my place to see things from that perspective, even if I wish I could.

So I’ll do my best to take things a day at a time, clinging to what I know about God even when my emotions don’t match up. And I’ll humbly ask for your continued prayers for sweet Hope and for us as we continue on this journey. Thank you so much for faithfully lifting us up before the Father thus far!

 

PS If you don’t know who George Bailey and Clarence are then you should watch It’s a Wonderful Life… just don’t start it while trying to wrap Christmas gifts late at night on Christmas Eve!

 

 

 

 

Our Hope

Our little daughter, Hope Joanna, was born on November 16 at 4:13 am. She weighed 7 lbs 2 oz and was 19.29 inches long. Hearing her cry when she arrived was such a wonderful sound and seeing her beautiful little face brought such joy.

After birth Hope was doing better than expected and I am so thankful for the moments we had together – moments I wasn’t sure we’d get to have. Natalie not only got to meet but also got to hold her new little sister and I even got to nurse her a bit.

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As time passed since her birth, Hope has experienced some difficulties that, while expected, are still tough to watch as a mom. She went from needing no assistance with breathing or eating to being on higher flow air and getting all food fully through a feeding tube.

Through echocardiograms, x-rays, and monitoring, the doctors have confirmed the diagnosis for our little girl and started to make a plan moving forward. Hope has been diagnosed with heterotaxy and an unbalanced atrioventricular septal defect (AVSD). It’s crazy, to look at her on the outside you would never be able to tell how complicated she is inside!

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Heterotaxy means that organs are in different places than they should be. In Hope’s case, her stomach is on the opposite side, her liver is displaced, her intestines are malrotated, and she does not have a spleen at all. The biggest concerns as a result of this are based on the malrotation and the spleen.

Since the spleen plays a big role in the body’s immunity, Hope is on amoxicillin daily and will continue to be for potentially 5 years or so. The malrotation may not be an issue, but can become one if the intestines become twisted on themselves. The doctors are still deciding whether or not this will be addressed surgically. If it is, it would be sometime down the road.

The heart defect – unbalanced AVSD – is what we had expected from the prenatal ultrasounds. Hope’s left ventricle is smaller than it should be and not completely separate from the right. So instead of 2 ventricles hers are kind of combined into one. Also, while a normal heart has a valve for each ventricle, Hope’s heart has one large valve that is off-centered to the right side.

In addition, her aorta is mildly narrowed and has a bicuspid valve instead of a tricuspid. Her inferior vena cava (the large vein that brings blood from the bottom half of the body to the heart) also comes up on the opposite side of where it should be.

Because of the combined nature of her ventricles, the oxygenated and deoxygenated blood in Hope’s heart mixes together and a larger amount of blood flows to the lungs that it should. At this point in time, the impact of this is mainly on her breathing. She breathes very fast – to watch her it’s like she is panting all the time, as if she were running on a treadmill or something. This expends a lot of energy which is why it is too difficult for her to eat by mouth and to gain weight.

In the long term, Hope’s body cannot function with her heart the way it is. The general consensus right now is that she will very likely need a single ventricle repair. We had hoped for a chance at a biventricular repair – to make the heart eventually more like a normal heart – but that seems unlikely.

The single ventricle repair uses staged surgeries to rework the heart in such a way that it can function with just one combined ventricle. The surgeries would likely happen around 6 months (the Glenn procedure) and potentially 5 years or so (the Fontan procedure).

Prior to those, however, the lungs need to be protected. So the first thing to be addressed is decreasing the amount of blood flowing to the lungs. As of today, it looks like that surgery will take place at the end of this week. The plan right now is to do a pulmonary band – pretty much a band around the pulmonary artery that decreases flow to the lungs – which should help with the breathing issue. They also want to take care of the narrowing of the aorta at the same time.

This means that our sweet little girl will be headed into open heart surgery, the first of potentially 3 or more that she’ll experience in her life, at just 2 weeks old.

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This is not the path I would have chosen – for Hope or for us as a family – but it is the road we’ve been given.

In the Bible, the word hope means confident expectation. While we can’t be sure of what will happen in the coming days, weeks, months, or years for our sweet girl, we can hold fast to our confident expectation of who God is and what He has promised. Whatever happens, He loves Hope and He loves us and He has a purpose and plan. And someday, when all the trials and suffering of this world have passed, we have the confident expectation of eternity in heaven… where there are no tears and no pain and every heart works perfectly.

We chose the name Joanna as a middle name in honor of my grandma who passed away last year and because it means God is gracious. Joanna was also a woman in the Bible who was healed by Jesus and was one of the first to discover that He had risen from the dead (Luke 8:1-3, Luke 24:9-10). Despite the difficulties that remain we are thankful for the healing work God did to remove the hydrops during my pregnancy. We were initially told that our baby would not live and here she is, in our arms. Whatever may come, we praise God for His graciousness and the healing that He did.

I know this is a long post and heavy on the complicated medical information but I wanted to share everything that we have at this point. We are so thankful for all the support and prayers we have received along the way and ask that you continue to pray for our little girl and for us.

Please pray for wisdom and skill for the surgeons, doctors and nurses that care for our daughter as well as for peace and strength for us. Watching my child struggle and not being able to fix it is probably the hardest thing I’ve ever experienced. I know God can and will use all things to His glory, but that knowledge doesn’t necessarily make things easier for me!

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During my pregnancy the song “I Have This Hope” by Tenth Avenue North was one that Steve heard over and over again. It makes me cry every time I listen but the words are so applicable to our lives right now. If you haven’t heard it you can find it here.

I have this hope, in the depths of my soul. In the flood or the fire, You’re with me and You won’t let go.

I cling to this truth… He is our hope.

 

Ready or Not…

November has arrived… due date month.

It’s strange, if you walked into our house today you’d never guess that we’re only a week and a half away from our official due date. It doesn’t look much like we’re preparing for a baby.

The infant car seat is still stashed away in the laundry room closet; the pack-n-play folded on it’s shelf in the basement. The “nursery” is home to Natalie’s dress up clothes and a crib that remains in toddler bed mode as a place for her to sit when she plays there.

No newborn clothes fill the dresser, washed and ready to go. They remain packed away in storage crates. No tiny diapers, no wipes, no baby shampoo stocked up in the bathroom.

And while my suitcase for the hospital is packed, there’s no diaper bag with a sweet little “going home” outfit inside. Instead my extra bag is full of things to stash in the NICU… things I hope might keep me busy (mentally and physically) for the weeks we’ll likely spend there.

Yes, things look different this time around. In some ways I feel ready, in many ways I do not.

As the day of our baby girl’s arrival draws near I prepare what I can and continue to “pray without ceasing”. I’ve taken the stance of the persistent widow in one of the parables Jesus told (Luke 18:1-8). I continue to ask for a miracle, knowing He is able but also knowing that He may have a different answer. And while I’ll admit that I’d prefer the miracle, I will trust Him and lean on Him no matter what.

We so appreciate the support we’ve received on this journey. Please continue to pray for us as we await our little one’s birth. If it helps, here are some specific things we’d covet your prayers for…

  • Healing. I told God I’m going to keep asking, while still trusting Him whatever the outcome may be. A complete miracle would be beyond amazing, but even a partial healing – with an outcome less complex than the doctors are predicting – would be wonderful. Especially for her heart to be more balanced so that a biventricular repair would be an option (as opposed to single ventricle) and that the medical unknowns (things that just can’t be seen yet) turn out to be all good news.
  • Wisdom. For the medical teams that will be working with her and for us, as parents, to take in all the information we’re given and make the best decisions we can as needed.
  • Protection. Over this baby and over me as we prepare for labor and delivery. Thankfully the doctors do not anticipate any complications related to the heart defect.
  • Natalie. She has been sweetly praying for her baby sister for so long and understands well, for what her age allows, what is going on. That being said, it will be an adjustment for her and I hope to make it as smooth and supported as possible.
  • Peace, rest, strength, and comfort. There are a lot of unknowns ahead. Please pray that we continue to find strength in God in every step of the journey.

Thank you again for all the kind encouragement, prayers, and loving support. We appreciate it more than words can say!

The Struggle with Surrender

I stood on the wooden deck looking out over the glassy surface of a now still lake. In the days prior waves had rolled across the surface but this morning it was quiet and calm. Thick icicles lined the docks and the cold air tempted me to hurry back inside, but I stayed put, focused on the moment.

In my hand I held a stone with a single word on it.

All weekend at the women’s retreat I was attending we had talked about stones of remembrance – ways God had worked in the past that we could cling to throughout our lives.

But today was different. Today I was holding something that I needed to let go of. Something that I tried so hard to control and figure out and plan for on my own. Something that I needed to hand over to God.

I lifted my arm and tossed the stone out over the lake. It hit the surface, sinking fast in the clear water, spreading ripples across the stillness.

The word on that stone? Future.

The next day I would go in for blood work to determine whether our most recent round of fertility treatments had been successful. But in that moment, even after over two years of trying, I felt such peace and encouragement. God had been with us every step of the way and He would be with us whatever the results turned out to be.

In that moment I felt sure that I could rest in His plan, that I was letting go of the future I imagined and clung to for myself and laying it down at His feet.

The phone call came the next afternoon. Pregnant! We were overjoyed and so thankful. All those prayers, all the questions and tears and waiting. I thought about how I’d surrendered my future to the Lord just the day before and I sat down to pray and praise Him for this incredible gift.

Just over three months later I would realize how far I still had to go in this journey of surrender.

We waited in the ultrasound room, filled with excitement. Our 20 week scan had just been completed and we thought all was well. The ultrasound technician had told us that we were expecting another girl, then told me to walk around a bit to see if the baby would move so she could look at a few more things.

The moment a doctor walked in the room I knew something was wrong.

Her eyes and voice were kind and sad as she broke the news… “I’m so sorry, but we found some fluid around the baby’s lungs.”

I sank to the chair next to Steve and put my head in my hands. “I can’t do this again,” I cried.

Hours later, at another ultrasound in the specialist’s office, we were given the full scope of it all. Hydrops again, just as Faith had, with fluid filling her chest cavity. But there was more too. A heart defect. Her stomach on the wrong side.

The doctor said that many people in our situation would choose to terminate and if that was something we were interested in we could decide over the next couple weeks. It was never a question in our minds that I would continue to carry this child, but it was devastating to even hear the option mentioned.

It was further confirmation of what they had already said – there was little to no hope this baby girl would survive.

For two weeks I wrestled with a nearly crippling feeling of claustrophobia. There’s no other way I can describe it. I felt trapped in my own life, my own body. I couldn’t stand the sight of my growing belly. Couldn’t bear the thought of leaving the house for fear of  some stranger asking about my pregnancy. Couldn’t grasp the idea of living through the loss of another child.

We prayed, we begged God to intervene.

Fifteen days after the initial news we waited and watched the ultrasound screen. We both noticed but didn’t dare speak our thoughts out loud in case we were wrong. The doctor came in and confirmed what we had barely dared to believe – the fluid was gone!

Suddenly the situation was no longer so dire and hopeless. This baby girl had a chance to live! We rejoiced, we praised, we went out to dinner that weekend, and for the first time in those two weeks I felt hopeful again.

But there was, and is, a long road ahead.

Since those first appointments we have learned more about our baby girl’s complicated heart. A heart defect that is significant and will, if the current diagnosis stands, need several surgeries. There are still unknowns. Exact timing and extent of surgeries. Length of NICU stay. Is her aorta blocked? Could there be other complications with her organs, given what we know about the stomach, that we cannot see?

And I’ll be honest… truly releasing my future is a lot harder than it seemed to be when I stood on that deck on that cold March morning and threw my stone in the lake.

The struggle to surrender is a daily, sometimes moment by moment, challenge for me. A battle really. I know God is with me, I trust Him and believe He will never leave me, but it is so very hard not to know what will happen to this baby girl.

I wish I could say that all the things I learned during our journey with Faith, all the things I know about God from my life with Him, have left me feeling at peace about all of this, but that wouldn’t be the truth.

The truth? My emotions have been all over the place, and feelings of peace have been few and far between. I’ve been angry, sad, confused, bitter, afraid… a lot of not so pretty things. And I’ve come to see, over and over again, how desperately I cling to control of my life.

Even when I know things are out of my hands, even when I know it’s impossible for me to physically do anything to change them, still I grasp for some semblance of control.

Maybe I feel like the future would seem less scary that way. Maybe I’m just fighting against the helplessness that crashes over me when I imagine my newborn baby going through open heart surgery. Maybe I’m stubbornly holding onto the “perfect” picture I had in my head for what my life could or should look like.

And maybe this is where God wants to meet me.

I have a long way to go. Sometimes I think this is going to be a lifelong challenge for me. But as our due date draws closer, and with it all those unknowns about our life ahead, I pray that God will hold me tight and help me to let go and lean on Him.

Because I am confident in this… that here, in my struggle to surrender, He remains.

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Waiting on the Edge of Battle

Ever since receiving our baby girl’s diagnosis, a scene from Lord of the Rings has been replaying in my head.

Pippin, a hobbit more known for his curiosity-induced mischief than any sort of bravery or prowess in war, has been made a Guard of the Citadel in Gondor, where the battle for Middle Earth will come to a head. He stands at the balcony, looking out over the smoke and flames of Mount Doom, and tells the wizard Gandalf, “I don’t want to be in a battle, but waiting on the edge of one I can’t escape is even worse.”

Those words. They keep sticking in my mind. Because that’s me. Feeling so small, looking out, afraid of the battle to come, waiting.

And most days waiting on the edge does seem worse than the battle itself. Once you’re in the battle there’s no going back, but in this time of waiting there’s so much uncertainty and too much time for my mind to play through potential scenarios.

I don’t know what the next weeks, months, or years will bring for our baby girl and for our family. I know that the thought of multiple open heart surgeries is downright terrifying and while I’m incredibly thankful that the fluid in her chest is gone, I know there is still a wide range of possible outcomes for this child.

And sometimes I think I’m not ready for this, not strong enough for this… that I don’t want to be in a battle. It feels like an overwhelming task, too big for me to handle.

Then one night, as I was trying to find a way to muster my own strength for the fight ahead, the words of a song by The Afters came to mind.

You’re going before me and oceans are parting
You’re fighting my battles
When my feet are failing and my heart is shaking
You’re fighting my battles

In that moment I was reminded that I don’t have to be strong enough to fight on my own. God is going before me. He is fighting my battle. He is fighting this baby’s battle.

Again I went back to the verse I shared the very first time I wrote about our diagnosis… maybe this will be a recurring theme for me in all that is to come!

The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

Unless God chooses to miraculously heal our baby girl, there is a battle to fight. A battle that brings surgeries and NICU stays and changes to many of the dreams and plans I had for our child, our family, and myself. A battle full of unknowns stretching ahead.

But… I know that God goes before me, before us, no matter what.

I know there will still be days when I feel utterly overwhelmed by it all, I’ve had plenty of them! Believing that God is with me doesn’t take away all the human emotions and struggles, but I will cling to His promise and lean on Him with all I can.

And I will be thankful that He is with me, waiting on the edge of battle and forever beyond.

 

PS We had an ultrasound today and the baby is on track with growth and still free of fluid. We’ve also now received all the genetic testing that has been completed thus far and everything is normal. More testing will be likely be done after she is born. We’ll continue to monitor things with ultrasounds both at the OB and with further cardiology appointments.

(Also, if you’re curious, the Afters song, Fighting My Battles, can be found here and the Lord of the Rings clip I was talking about can be found here.)

A Complicated Little Heart

We had our appointment with the pediatric cardiologist today for a fetal echocardiogram (a detailed ultrasound of the heart). We have some more information and potential scenarios moving forward, however there are also some things that cannot be determined yet and most likely won’t be able to be fully known until after the baby is born.

Here’s what we know at this point: There is an unbalanced atrioventricular septal defect. Basically the septum that is supposed to separate the two ventricles hasn’t formed fully as it should. So instead of a right and left ventricle there’s sort of one combined ventricle. On a positive note – still no fluid!

Here’s what we don’t know: The aortic arch looks a little small but it can be hard to see on the ultrasound. It will need to be checked for possible coarctation (narrowing of the aorta) at birth. Also need to keep checking that arteries and veins go to the right places.

Potential scenarios: They’ll need to look at the baby’s heart when she is born, but we’re likely looking at multiple (possibly three?) surgeries. Depending on what they find, one surgery may be required right away, or we might be able to wait a few weeks for the first one. Either way we’re probably looking at a NICU stay after birth, which could be as long as 4-6 weeks. Thankfully there are no concerns regarding my ability to carry to term and have a normal delivery.

So… this is a lot to take in. Honestly, I’m overwhelmed and exhausted by it all. Our baby girl has a complicated little heart and it’s scary, as a mom, to think of all these things that are wrong with your child. I wish things were different and am going to continue praying for a miracle, but am also trying to mentally prepare for what may be ahead.

Please keep the prayers coming and thank you again for all the support.

 

PS If any of this was totally confusing you’re not alone! I have a biology degree and even pulled out my old college textbook yesterday in preparation for this appointment and it’s still a bit much. This site is pretty good with a diagram and basic explanation of a normal heart if you want – http://www.chop.edu/pages/how-normal-heart-works

 

 

 

Some Good News and More Waiting

Fifteen days ago we found out that our baby girl had several serious complications including fluid around her lungs and a heart defect. Today was our follow up appointment – an ultrasound and meeting with the doctor and genetic counselor.

For fifteen days we have prayed and wept over this little girl… both for a miracle and for God’s strength and comfort to carry on if she isn’t healed.

As the sonographer spread the gel on my stomach this afternoon I stared at the screen, waiting for the image of our baby to appear. I was afraid of seeing more of that black space in her little body… that black space that meant fluid building up.

Her sweet profile came up on the screen…

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… and then the sonographer began a close examination of her heart. As I watched I thought that something looked different. I didn’t want to get my hopes up, but it seemed like maybe, just maybe, the fluid wasn’t there.

Then the sonographer herself commented that the fluid was reduced. She had seen our pictures from two weeks ago and wasn’t seeing that same fluid today!

Later the doctor came in with words that confirmed the news – the fluid is gone!! It is, in her words, “surprisingly good news” and we are praising God for this wonderful answer to prayer!

We still have a long road ahead. The heart condition is a serious concern and potentially complex. We’ll be seeing a pediatric cardiologist in the near future in hopes of getting some more information and guidance moving forward.

There are a lot of unanswered genetic questions that we are waiting for as well. We do have the general chromosomal results back and everything was normal, ruling out things like Down Syndrome or Turner Syndrome, but we hope to get more results in the coming weeks.

The doctor’s prognosis has gone from “dire” to a chance of the baby surviving and, with successful surgery and no genetic issues, potentially living a healthy life.

We know that God has the final say on this sweet girl. He knows the number of her days and He knows exactly what is going on in her little body, even as we – her parents and the medical teams – continue to wait for answers.

I am so thankful for the healing that has already taken place and of course pray for further healing. We long to bring our daughter home healthy and strong, but we love her no matter what happens in the coming weeks and months.

We know God continues to walk with us every step of the way. Last week I shared the words of Deuteronomy 31:8 and they still ring true today: “The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed.” I don’t know how I would make it through without Him going ahead of us and holding us in His hands.

I can’t end without also saying that we are beyond grateful for the overwhelming outpouring of love and prayers and support we have received in these past two weeks. Thank you so very much! Please continue to lift us and our little girl up before the Lord!

 

 

 

 

Sometimes Lightning Does Strike Twice

Last Thursday we received the devastating news that our baby, a third little girl, has several serious complications. According to the doctors the prognosis is very poor and they told us that we should not expect this baby to survive.

My heart ached as I absorbed the idea that this little girl, who we have longed for and prayed for and imagined bringing home, might join her big sister, Faith, in Heaven instead.

My heart aches now as I wrestle with this path we’re on and wait for whatever is to come.

At what was meant to be our routine 20 week anatomical ultrasound they discovered fluid in this baby’s chest cavity surrounding her lungs. It felt like some sort of terrible deja vu – reminiscent of the hydrops that Faith experienced and the fluid that was discovered throughout her body at 30 weeks.

Following that appointment we were sent to a specialist who found, in addition to the fluid, that this little girl has a heart defect and her stomach looks to be located on the opposite side of where it should be.

The doctors suspect an underlying genetic cause. We had done no genetic testing earlier in the pregnancy so I had amniocentesis on Thursday and we should receive the results at our appointment next Friday, as well as have a follow up ultrasound then.

When Faith was born we had many tests done, both during the last days of my pregnancy with her as well as an autopsy and genetic testing afterwards, and everything came up clear. No answer. Unexplained. A lightning strike.

Sometimes lightning strikes twice.

I have so many emotions and thoughts, but it’s hard to put everything into words. I am crushed and truly can’t believe this is happening again.

God is with us, we know. He will never leave us… but still, this is difficult beyond words.

I will try to share more when I can and update as we receive more information. In the meantime, we sincerely covet your prayers for us and for this little baby girl.

The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed.

Deuteronomy 31:8