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.)

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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!