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!

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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.)

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!