Tag: congenital heart defect

Is He Enough?

1 Comment

Last fall, not long before Hope was born, I lay in bed staring at the full moon outside. I don’t remember what was keeping me up, probably some worry over the baby girl with the mixed up heart growing inside me, but I remember a thought suddenly coming to mind. A question really. One that broke through my mind as clearly as the bright beams of moonlight through the window.

Is He enough?

What a question.

I know the right answer is yes, of course He is. God is enough; He is all I ever need. I could fill page after page with verses and songs declaring that truth.

And it is the truth.

But when I take a real hard look at myself, I find it is also a sobering truth.

Because, if I have to admit it, the thought of life without the things I care so much about is terrifying. What would I do if everyone I loved was gone? What would I do if everything was taken away? What would I do if all I had was God?

Is He enough?

I think of the all the times I’ve struggled with surrender. I think of the prayers I’ve prayed with answers that didn’t turn out the way I wanted. I think of all the dreams I’ve imagined for my life that detoured into paths I didn’t want to walk.

Over and over my sadness, my disappointment, my anger is because the outcome, the earthly thing, wasn’t what I wanted.

It’s all too easy to become wrapped up in the things God could give me, even if they are good things, instead of dwelling on God Himself. But that is wrong, because in doing so I diminish my view of God. With those thoughts I am essentially saying that He isn’t enough.

And yet, has He not remained faithful and unchanging, upholding me with His hand, every moment of my life? Have I forgotten that His own Son’s blood poured out to forgive me? Have I lost sight of the joy of Heaven, of perfection through eternity, that He is preparing for me?

Is He enough?

In that moment, in the bright moonlight that night before I fell asleep, I felt truly at peace. The question that shone so clearly in my mind was answered just as clearly in my heart. Yes. He is and always will be enough.

It’s still hard. I’m human and life is difficult and suffering and sorrow are real. I still struggle with surrender, wishing I could grasp on to some control over things I really can’t change. I still worry and cry and clench my jaw in fear at the thought of losing someone I love. But I do believe He is enough.

Enough to see me through each day and enough even if the worst happens. I want to keep my eyes fixed on Him, instead of what He can give me. To be satisfied fully in who He is and to be filled with His peace and presence.

I love these words from Natalie Grant’s song “More Than Anything“:

Help me want the Healer
More than the healing
Help me want the Savior
More than the saving
Help me want the Giver
More than the giving
Oh help me want You Jesus
More than anything

This is my prayer – to want Him, God Himself, more than anything. Because He is enough.

***

Hope Update:

We sincerely covet your prayers as Hope will be having her next open heart surgery on November 20th in Boston. Please pray that Hope stays healthy in the coming week and for protection for her during surgery and recovery. Please pray for wisdom for the surgeon, especially as we are asking him to make a judgement call based on what he sees while in the operating room on whether or not to proceed with any biventricular repair. Please pray for peace and strength for us and all of our family through this time. We’d also appreciate prayers for safe travel and a smooth transition as we settle in to a “home” away from home for an extended time. Thank you so much for lifting us before the Lord. Words cannot express how much it means to us!

 

Advertisements

Even If

1 Comment

Recently I found the classic VeggieTales movie Rack, Shack and Benny to watch with Natalie for the first time. While I nostalgically sang along with tunes I hadn’t heard in years, Natalie anxiously half-covered her eyes with her hands. “I don’t want to see the fire,” she pleaded.

She has learned the real story of Shadrach, Meshach and Abednego, but despite knowing the ending – that they would be saved from the fire – she was afraid to see the moment when they are tossed into the flames, even when “they” in this case were a trio of vegetables!

And it hit me that perhaps the story had become so familiar to me that I started to lose sight of the significance of it.

That the flames had lost their terrifying power. That the words of those three men had become somehow less courageous, less trusting, less devoted. That in knowing the ending, I missed out on the impact of that moment in front of the fire.

Even if.

Shadrach, Meshach and Abednego stood before king Nebuchadnezzar, refusing to bow to the golden statue he set up, refusing to worship anything or anyone but God. He gave them one last chance to escape the blazing fire and they replied,

“…our God whom we serve is able to deliver us from the furnace of blazing fire; and He will deliver us out of your hand, O king. But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up.” Daniel 3:17-18

They didn’t know the ending.

As Nebuchadnezzar in his fury ordered the fire to be heated seven times more than usual, a blaze so hot it killed the guards who carried them up, Shadrach, Meshach, and Abednego didn’t know that God would save them.

They knew He could, but they didn’t know if He would.

And yet their words remained: even if. Courageous, wholly trusting, fully devoted. The ending didn’t change their answer. God is able to save us, but even if He doesn’t, we will serve Him.

Sometimes I wish I knew the ending for my story. For the story of our sweet baby girl. Sometimes I think maybe that would make this “fire” easier to walk through.

But then I think about those two words… even if.

Would knowing the ending change my trust in God? Would it change my devotion to Him?

Can I truly say that I will serve Him, love Him, and trust Him no matter what happens in the middle of those flames and in all that lays beyond? No matter what the ending turns out to be?

I say I will, but my emotions are slow to follow. Fear is especially hard for me. Fear that takes the form of a different set of words – what if?

What if something happens during Hope’s next surgery and she isn’t the same person anymore? What if she is constantly sick? What if someday she needs a heart transplant? What if she can’t do things she wants to do? What if she dies?

I read an article entitled “What If the Worst Happens?” that touched on this very issue. In it the author writes about changing our “what if” to “even if”. I love this quote:

“Even if the worst happens, God’s grace is sufficient. Those three young men faced the fire without fear because they knew that whatever the outcome it would ultimately be for their good and for God’s glory. They did not ask “what if” the worst happened. They were satisfied knowing that “even if” the worst happened, God would take care of them.”

I want to live that way. To face the fire, face the future, without fear. I want to stand in that moment, when the ending is unknown, and declare “even if”.

Even if all those fears came true, I will still serve God, still trust Him, still love Him. Even if the worst happens, God’s grace is sufficient and He will take care of me.

Even if.

Two weeks after the devastating news that our baby girl’s combination of a heart defect and hydrops would lead to her death, I was driving to our follow up ultrasound when MercyMe’s song “Even If” came on the radio. I cried through the words…

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

 

I know He can save, but I don’t know if He will. I know He is able, but I don’t know if He will choose to work in the way I would ask. But even if… my hope is in Him alone. Even if… I will serve and trust Him. Even if… He will take care of me, take care of us.

Even if.

IMG_3321

A medical update on Hope:

We took a trip to Boston Children’s Hospital at the beginning of the month as we have been pursuing a second opinion on surgical options. We love our team here but wanted to make sure we looked into all possibilities in order to make the best decision.

Hope had an MRI, echocardiogram, and heart catheterization while in Boston and we were able to meet with both a cardiologist and surgeon. It was a lot of information to process and when all is said and done there isn’t one single clear path as to what should definitely be done for Hope’s complicated little heart.

In discussing with our cardiologist here and considering different options we have decided to have Hope’s next surgery in Boston. The surgery includes procedures called the Glenn and DKS, both of which sort of “work around” her heart as it is, taking pressure off the heart and helping it function in a more stable state.

We decided to have this done in Boston so that the surgeon there can also look at one of Hope’s valves during the operation and potentially take some additional surgical steps to help her left ventricle grow. This may or may not be possible, depending on what he sees when he is in there. Since he specializes in complex biventricular repairs we need to have him be the one to perform the surgery. It is likely that Hope will be on the single ventricle path, but we want to make sure we have fully explored the biventricular option. We expect this surgery to be in the next month or so, as long as Hope stays healthy.

We sincerely appreciate continued prayers as we prepare for this surgery and all that comes with being away from home for an extended time. Knowing we have people lifting our little girl (and us) up before the Lord means so much!

 

He Knows Me

4 Comments

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.

IMG_1486

*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!

Our Hope

7 Comments

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.

FullSizeRender(1)

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!

IMG_9876

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.

IMG_9858

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!

IMG_9845

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…

2 Comments

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

2 Comments

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.

IMG_9556