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.)

Advertisements

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…

FullSizeRender

… 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

 

 

 

 

Dear Faith

Dear Faith,

Happy 5th birthday my sweet daughter! I can’t believe it has been five years since I held you in my arms.

It’s funny, but ever since you were born I’ve pictured you in Heaven about the age you would be now. I don’t know why but that’s how I’ve often imagined you… a young girl with long brown hair, smiling and giggling as you run through Heaven. A girl big enough to run into my arms, but small enough to still nestle onto my lap.

The words of an old Jars of Clay song make me think of you…

In open fields of wild flowers, she breathes the air and flies away, she thanks her Jesus for the daisies and the roses in no simple language, someday she’ll understand the meaning of it all

When I think of you running through Heaven I think of Heaven like that – not just the golden streets but also a huge field full of tall grass and flowers that tickle your legs and never make you sneeze! I picture you, never getting tired, never getting hurt, never feeling sad. I imagine your pure joy as you revel in a place that knows no sorrow or pain or sickness or death.

And I think of how incredible it is that you already understand the meaning of it all.

The song goes on to say…

Someday she’ll trust Him, and learn how to see Him, someday He’ll call her, and she will come running

I rejoice in knowing that you already live that, in a purer and deeper way than you ever could here on earth. You trust Him. You’ve seen Him with your own eyes. He called you Home on the day you were born and you came running.

Maybe that’s why I picture you running today. Running to His arms with the joy of a little girl who has never known anything but love. From my womb where you were treasured and so deeply loved, to His arms where you are fully known and loved beyond comprehension.

I miss you, but I am so thankful to know where you are and Who is holding you until I can hold you again.

With love always my sweet girl,

Mommy

Faith foot

 

Adventures in (Amateur) Gardening

When we found out that our town recently built a community garden at a park just minutes from our house we decided to dig in (pun intended) to a new adventure – growing vegetables.

Though our yard has room for a garden, it is also continually visited by deer, rabbits, woodchucks, etc which would make growing anything edible pretty tough. I haven’t been inspired enough to try to build our own fenced in area, but the offer of raised beds – built, filled with dirt, and fenced in – was pretty enticing!

We were totally overzealous in our purchasing of plants and seeds and I imagine more experienced gardeners might cringe at how much we tried to cram into our four by eight food garden bed, but I’m hopeful that we get at least some of them to grow.

Honestly, for me at least, it’s more about the process and especially about letting Natalie be involved. I want her to experience the excitement of planting something and watching it grow… and, if all goes well, the reward of eating something you grew yourself.

With that in mind, I’ve enlisted her help all along the way, from making labels for each veggie in our garden to planting and watering. And, so far, she loves it!

We made simple labels by collecting rocks around our house and painting them. When the paint was dry I wrote the name of each vegetable on top in permanent marker. She loves painting so this was a big hit!

IMG_8450

Last week we spent an hour or so planting. Natalie was very hands on which was fun, albeit messy! Here she is hard at work – plus a bonus picture she took of me, ha!

I’m really curious to see how things turn out… especially those rows of tiny seeds that were sort of just dumped in by little three-year-old hands! And while I certainly hope to be eating our veggies this summer, I’m also thankful simply for the opportunity to do this together as a family and share another new adventure with my sweet girl.

PS I keep meaning to write more often but other things always seem to take priority. Hopefully a few updates coming this month!

 

 

 

Behind the Blue Swing

There’s a worn patch of grass behind the blue swing.

I stand there, pushing and pushing, until my arms ache. Sometimes she giggles or sings or chats with me. Sometimes she calls “higher, higher!” and I do my best to oblige, despite the fact that she is much bigger than she was last year, and the year before that. Sometimes she sits quietly, lulled by the peaceful rhythm, soaking in the sun that filters through the branches above us.

I watch her.

The way her little hands grasp the rope. The soft wisps of hair blowing against her cheeks. Long eyelashes behind oversized sunglasses that rest on that sweet nose I love to kiss.

My eyes wander to the woods and brush behind our yard.

Green tips the ends of the branches, spring is finally coming. A tiny woodpecker circles the wide trunk of a tree, searching for the perfect spot to find a snack. A white butterfly flutters here, a bumble bee zips there. Deer, barely visible unless they move, tip toe along trampled paths, just beyond the dog’s reach. A hawk glides and lands in a tall tree, folding his wings and peering out regally from his high perch.

I want to capture the moment… the squeak of the swing, the sway of the branch, the song of the birds our only accompaniment. It’s peaceful, my thoughts are quiet, and I can enjoy just being together.

In a world full of busyness, distractions, to do lists, and noise, I hope I never forget to stop and savor the precious time I share with my little girl.

I am so thankful for her, and for the simple joy I find… behind the blue swing.

 

PS It’s been a long time! Hoping to be back with some updates soon and wishing everyone a very wonderful Easter weekend. If you’re interested, here are a few of my Easter posts from last year: While We Were, Bought with the Precious Blood, and Empty.

The Courage to Wait

Natalie is on a Cinderella kick right now.

We do a lot of fairy godmother magic together… turning invisible pumpkins into equally invisible carriages and making imaginary glass slippers appear on our feet. She sweeps her wand of pink and blue ribbons through the air and creates a palace in our family room so we can dance at the ball together.

It’s sweet and special and so much fun for me, the girl who always loved imaginary play more than anything else.

Yesterday I showed her some scenes from Disney’s live action version of Cinderella. I’ve watched it myself several times before and always enjoyed it, but as I saw it again something stuck with me in a way that wouldn’t let go.

The theme of courage stood out to me. The courage to persevere through trials and the courage to wait. A biblical truth wrapped in a fairy tale story.

It made me think of Joseph… sold into slavery by his own brothers, falsely accused and thrown into prison, forgotten and wronged. And yet, after all of that, he was raised up to be second only to Pharoah in the land of Egypt.

But what if we didn’t know the ending?

What would we think, in the midst of Joseph’s troubles, if we didn’t know that he would later tell his brothers,“Now do not be grieved or angry with yourselves, because you sold me here, for God sent me before you to preserve life.”(Genesis 45:5)?

How would we feel, as Cinderella is cruelly mistreated, if we didn’t know her story would end in “happily ever after”?

We all have Cinderella and Joseph moments don’t we?

No, I’m not saying we all have evil stepmothers who treat us like servants, or brothers who sell us to slave traders… but we all have trials in our life. Sufferings that we can’t make sense of. Unanswered questions. Struggles that seem unfair.

And we don’t know the ending.

That’s the hardest part. That’s what takes courage. Courage to persevere and courage to wait, not for a fairy godmother’s magic, but for a very real God who has a very real plan for our lives.

Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord. Psalm 27:14

Waiting isn’t easy for me. I like plans and clear directions and paths to follow. But the ending isn’t for me to know and I find comfort in the truth that God will never leave me (Deut 31:6), that He has overcome the world (John 16:33), and that the trials themselves serve to grow me in perseverance, character, and hope (Romans 5:3-5).

So may we have the courage to wait, even when the ending of our story is unknown.

wait for the Lord

 

 

Summer Challenge: Daniel in the Lions Den

Wow, it’s the last week of the Summer Challenge already?! I hope you and your family have enjoyed coming along with us. Thanks so much for being part of this!

Week 8: Daniel in the Lions Den

Read: Daniel 6

Talk it Through:

Prayer is very important. Each of us should spend time every day praying – it’s our way of talking to God!

Don’t let anyone tell you that you can’t pray or follow God. Stand up for Him, He will be with you.

Try This: 

Make a lion puppet with prayer reminders on the handle. You will need: popsicle sticks, cupcake liners, crayons, tape, marker.

The cupcake liner will the the head of your lion. Start by flattening it on the table and letting the kids color it to look like a lion’s face and mane.

IMG_3978

Next, tape the liner to the top of your popsicle stick. I used 2 liners to give it a little more texture and thickness.

IMG_3979

As a finishing touch, write a reminder of something you want to be praying for on the stick. It’s best to get your little one involved here – ask them about something they want to pray for!

IMG_3980

Thanks again for joining us through the Summer Challenge! Remember the words of Jesus, “let the little children come to Me”… may it be true!

 

Summer Challenge: Fiery Furnace

Week 7: Fiery Furnace

Read: Daniel 3

Talk it Through: 

Sometimes following God and standing up for what we believe means standing alone when everyone else is doing something different. But we are never really alone because God is always with us.

We serve a powerful God! He is the only one who deserves our worship.

Try This:

Campfire Night: As summer is winding down the nights are getting a bit cooler (at least around here!). If you have a spot that allows for it, have a campfire together as a family. you could even read the account of Shadrach, Meshach and Abed-nego as you sit fireside!

Hand Print Fire Craft: “Build” a fire using your little one’s hands.

Natalie is a big fan of painting lately so we did ours with paint. Messy but fun!

IMG_3775

I drew in some “logs” at the bottom and added a reminder from our lesson for the week at the top…

IMG_3776

If you want to avoid the mess of paint, another option is to trace your little one’s hand and cut out several of them. You could use yellow paper or color them. Then glue or tape them together on another blank page in a cluster to look like the flames of a fire.