I Know That Face. I Know That Feeling.

“It’s just really really scary,” she said.

Picture this:

Chris and I decide to go out to dinner with my mom and dad. I choose O’Charley’s (we hardly ever go there) because I just want a piece of fish and some veggies. (Which was DELICIOUS, by the way.)

Mom rides with Eloise and I because dad and Chris have to run an errand first. On the way there, I’m sharing with mom how I feel like during these last few weeks, the Lord has really protected my spirit from being overwhelmed with fear.

I thought it would be a good idea the other day to do some at home research on Edith’s heart condition. While researching, I came across some really scary statistics. I mean, when your unborn child’s condition is a 1 in 22,000 kind of statistic, that can be scary. But I was explaining to my mom how I felt like I’ve been so divinely protected from being fearful of the statistics and quite honestly, the reality of the severity of our situation. Even after doing my at home research, and becoming more educated on Edith’s congenital heart defect, I can still walk through this uncertainty fearless; I don’t stay in a place of fear. I’m thankful for that.  (There are scary moments, sure. I would be lying if I said there weren’t times when I wasn’t overwhelmed by our situation, but I don’t stay there.) 

We got to the restaurant before the guys, and while we sat waiting, continued to chat about walking through this season faithfully. It was good conversation.

We enjoyed our dinner, talking about Eloise dipping Doritos in milk and other silliness. In passing, our server had mentioned that she was exhausted from being pregnant. In my mind I was totally like “I feel ya girl!”

As we wrapped up our meal and slipped the young girl the checks, she noticed my growing baby bump. She asked if I was pregnant, to which conversation about due dates and genders ensued. She’s due in July with a little girl. I told her how much fun girls are, as Eloise was ironically screaming in her daddy’s lap. She excitedly pulled out her phone to show us a picture of her latest ultrasound, showing her tiny baby sucking her thumb. She then began to tell us how she’s going in next week to have another ultrasound, one that’s more detailed. Her face quickly became solemn and serious.

“What does that mean?” I asked.

“They found a problem with her heart, so we’re going to have it looked at in more detail,” she replied.

Our whole table looked at each other.

You could feel how scared she was. Young. First time mom. Faced with uncertainty.”It’s just really really scary,” she said.

The excitement of motherhood suddenly swept away amidst the fear of reality. I know that face. I know that feeling. 

I almost started crying. I shared with her how we have a heart baby on the way. I tried to encourage her that them finding the heart defect early on is a good thing; how there are fabulous teams of doctors around us now monitoring her and helping us come up with a plan.

She listened.

Mom asked if we could pray with her. So there, in the very back of O’Charley’s, on a Saturday night, we prayed with and for a scared young mom, pregnant with a little girl with a possible heart defect – a missing valve to be exact. 

WHATTTTT.

As I think of her and her unborn baby, my prayer is that the Lord would also protect her heart and mind from being afraid. Our encounter wasn’t chance. It was a reminder to me that God continues to work in the details of our situation; a reminder that we aren’t just a scary statistic of 1 in 22,000. I hope, in some way, it was an encouragement to her as well.

Her baby girl’s name is Madison. If you think of praying for our Edith, consider also praying for baby Madison. Pray for our server and her boyfriend/husband that they would feel comforted walking through this uncertainty.

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I Know That Face. I Know That Feeling.

A Week Gone By

It’s been just over a week since the first time we heard that our girl has a congenital heart defect. And let me be honest, it has been the longest week of my life. (I could probably say the same for Chris.) Every day now tends to tick by pretty slowly. It’s probably a combination of the fact that the medicine that they have me on keeps me from sleeping well, and the weight of every day counting at this point.

Today is our first follow up appointment since last week. We have a team of three new doctor’s groups now, so the weeks leading up to her birth are going to be busy. Today we meet with the neonatal cardiologist, to do a check up on her heart and make sure she hasn’t built up any fluid around her organs due to lack of adequate blood pumping. We will also be touring Eggleston Children’s Hospital today – seeing the facility and meeting the surgeons that will be with our girl as soon as she’s born. (I feel like I have 243579238 questions to ask them, but I can’t think of a single one.)

I’m not sure how I will handle today. My hope is that it is an extra ounce of encouragement and reassurance for me, knowing she’s in the best care possible. There’s another part of me that’s afraid this will be my reality check and/or meltdown moment – the realization that the dreams that I have for our Edith may not be reality.

The timing in all of this has been laid out for us before we knew what was coming. Where I work, we have been going through a study of the book of James. Yesterday we talked through the end of James 4, and how making our plans without trusting the Lord to lay them before us is arrogant. It made me think about how I’ve had my birth plan laid out since before we found out I was pregnant with Edith; how I’ve had dreams of taking her home and what those first few weeks with a two year old and a newborn would look like; how Chris and I have talked about what she may look like or if her personality will be anything like her big sisters.

Eloise was an emergency c-section and NICU baby. I dreamed that we wouldn’t have to endure any of that with Edith. That I would go into labor “like normal”, we would rush to the hospital, she would come on her own, healthy. I dreamed about introducing Eloise to her baby sister at the hospital. I dreamed about leaving the hospital with our new baby girl, headed home to experience life as a family of four, with a two year old and a new baby (and all the craziness that entails).

That won’t happen. As soon as she’s developed enough, we will set a date and time, I’ll be wheeled into the operating room and she’ll enter the world much like her sister did. I won’t likely get to hold her after she’s born, as she’ll be immediately swept away to be hooked up to monitors and tubes. She’ll then be moved to another hospital where she’ll have surgery, and I’ll be recovering separately from my own surgery. There’s no telling how long her hospital stay will be. We will, again, leave the hospital without our new girl.

We have dreams for our children. We want good for them. I want my girls to grow up to love the Lord, love each other, and have beautiful families of their own one day. And it’s not that those are bad things…they’re great things. But those are MY dreams. I’m realizing through this process that my dreams don’t and won’t necessarily look like the dreams that my girls will have for themselves. Or more importantly, what the Lord has planned for their lives – things greater than I can even understand, especially right now.

I would be lying if I said I didn’t have moments of fear, worry, or even anger creep in. I am learning how to rest in the truths that I know. It’s tough in the midst of life’s uncertainties. My mom always said to me growing up “don’t forget in the darkness what has been revealed to you in the light”. (She’s such a wise woman. Everyone needs a mom like mine.) That replays in my mind now. Here’s what I know to be true:

  • I am GREATLY loved and cared for, by both my Abba Father and friends and family.
  • Our Lord loves our Edith WAY more than I do.
  • He CAN heal her heart completely.
  • If her heart isn’t healed completely, it’s not because He doesn’t love me or her.
  • Nothing is wasted. He works ALL things for my good.
  • God is good. He was good before we found out about any of this. He is good today. He will be good tomorrow.

The body of Christ has been more real to us in this last week, than maybe I have ever noticed before. The kind words, the affirmation of prayers, and simple acts of kindness haven’t gone unnoticed. They’ve refreshed our spirits in JUST the right moments. We thank you.

How you can continue to pray for us:

  • That Edith’s heart would be COMPLETELY healed.
  • That we would be confident in the plan that the Lord has for our family.
  • That any fear in our hearts and minds would be wiped away.
  • That the medicine that I’m on would stop making me feel like crud.

 

A Week Gone By

Chance Encounter…Hardly.

I’m trying to write down everything; I don’t want to forget all of the moments of encouragement along these next few days/weeks/months. 

We got out of the hospital yesterday. Having been cooped up for three days, attached to tubes and monitors, I needed to get out. I had Chris take me to Target (holla!) for a few things this afternoon. As we were leaving, I asked him to stop by TJ Maxx and let me peak and see if they had any newborn size sleepers, since it’s very likely our girl will come early, and be on the smaller side. (I haven’t bought anything newborn size up to this point, because, well, we didn’t use that size for our Eloise.) He, quite frankly, hates stores like TJ Maxx, so he stayed in the car with E as I popped in for a quick peak at their baby section…or so I thought.

I walked right to where I needed to look, but there was an older couple in the aisle, so I couldn’t get to the size I needed. Instead, I meandered around the aisles of larger children’s clothing, toys, and accessories, waiting on them to finish their shopping before I started looking. The older lady was digging through racks of dresses while her husband watched. I rounded the corner and the older gentleman walked right up to me, without hesitation. This is the conversation that followed:

Man: “Is that a girl that you’re having?” (pointing to my protruding baby bump)

Me: “It sure is!”

Man: “Is this your first?”

Me: “No, I have another little girl who’s almost two. This will be our second girl.”

Man: “Let me just tell you, little girls are special. We had sons, and then had three grandsons. Finally we got a granddaughter.”

Me: “They’re a lot of fun. And even more fun to shop for!”

Man: “Our granddaughter is extra special. She’s a fighter. When she was born, she immediately had to have heart surgery.”

I felt like my jaw dropped, as I could feel my eyes start watering up.

Me: “Our little girl is going to be extra special too. When she’s born, she’s going to have to immediately have surgery to fix her heart.”

He asked some questions about her condition, to which I answered to the best of my ability. The gentleman then called his wife over and explained what had just went down. She looked at me and proceeded to ask if I was a Christian and if I would be okay if she prayed over me and our unborn girl. As she laid hands on my belly, she began thanking Jesus for “our perfectly formed baby”. She prayed that any fear would be wiped away from my spirit. She prayed that whatever was causing her heart to malfunction would be healed.

I’m not really sure what I said after that. I stood in the middle of TJ Maxx, crying.

Chance encounter? Hardly. 

I left without purchasing a thing. I never even looked at the newborn section.

But I guess I wasn’t supposed to be shopping for newborn clothes today. 

Chance Encounter…Hardly.

The Words No Mama Wants To Hear

“Your baby’s heart rate is dropping.”

“If I had a scalpel here, I would cut you open and deliver her now.”

“There may not be enough time.”

At 9:00 am on Tuesday morning, those words rocked our worlds. Tears poured out of Chris’ eyes as I paced the doctor’s office room trying to maintain some sort of composure, while simultaneously searching my brain for an ounce of Truth to cling to. I had a few scriptures I’ve stored away in my heart come to mind, but the song Good Good Father came rushing in. I sat in the doctor’s office singing that song. I rode in the ambulance singing that song. I laid on the hospital bed, scared, surrounded by 4 doctors, 3 nurses, and 2 anesthesiologists singing that song. (And as I sit here still, tears just stream down my face as all of those emotions come right back…ugh, can I blame it on the hormones?)

A routine OB appointment, at only 25 weeks, the day before, turned in to a referral to a specialist. The visit to the specialist the following day turned into two different ambulance rides, two different hospitals, and three days in a hospital room (so far).

So, what’s going on? At just 25 weeks gestation, our Edith has been diagnosed with a level 3 congenital heart block. Basically, her top chambers beat normally, but don’t communicate to the bottom chambers, which are beating at less than half the speed of the top. A normal heart in utero beats between 120-160 bpm. Our girl’s is beating at about 60. This will most likely require surgery immediately following her birth, which we hope to make to 36 weeks gestation.

Being in a hospital room, by yourself, gives you some time to process – not sure if that’s a good thing or bad thing. For me, probably good, because I can tend to internalize until I explode.

I’ve been trying to process what the remainder of this pregnancy will look like.

(It will likely be filled with numerous doctor’s visits, closely monitoring every movement and every heart beat. It will likely be much shorter than we had anticipated. And my plans for a VBAC are long gone – seems silly, but for real though.)

I’ve been trying to process what our Edith’s life will look like as soon as she makes her entrance. 

(It will likely mean immediate surgery once she’s born to insert a pacemaker into her tiny abdomen. It will likely mean time in the NICU – been there done that and honestly dreading going back to that place. It will likely mean lots and lots of doctor’s visits. Maybe even some complications.)

What I haven’t been trying to process is “why”.

Why not? Because, really, it doesn’t matter. The better question I’ve posed is “why not me?” “Why not us?” We have been given EVERYTHING we need to walk through this uncertainty with grace and truth. We’ve got this and I don’t question the why. Instead, I am petitioning our Heavenly Father boldly asking that He heal her heart, completely. I trust the team of doctors that are surrounding us. I am SO grateful for modern medicine – without it, our story could look very different. But I also know that the God that holds the universe in the palm of His hand, holds me, my family, and our unborn girl. Psalm 147:3 tells me that “God heals the brokenhearted and binds up their wounds.” This has become my verse for our girl. We often think of a broken heart as something emotional. I am clinging to the physical promise. My God CAN heal her heart. I am solely focused on doing what needs to be done to ensure that our girl has the best chance for thriving.

If you know me, even a little, you know that I don’t enjoy living in a world of unknowns. We are surrounded by many unknowns right now. We don’t know how long her heart will hold out, and when she will make her arrival. We don’t know what the hours/days/weeks/years will look like after she’s born. We don’t know how any of this will fit in “our budget”. We don’t know what’s going on with my body to create these antibodies that are attacking her heart systems. Unknowns are scary. And these unknowns are particularly scary. I would be lying if I said that I didn’t have moments of fear flood my soul.

But I have NOT been given a spirit of fear. I have been given a spirit of power, of love, and of a sound mind!

I believe that the Lord has been preparing us for this season. I have shared with many of my coworkers that I am in a huge season of not knowing what’s going on. I feel like these, now seemingly minor, unknowns, have prepared me for this. Chris, at the beginning of this week, before any of this came to fruition, shared with me how he believes God is merely asking him to trust Him, no strings attached. Chris’ answer was, “I trust you”. And then all this has happened…talk about a testing of one’s trust. (PS- I am SO grateful that I have such a strong man to walk through this with. He’s a gift to me, and I cannot imagine having to do this without his strength, kindness, and grace beside me.)

It’s an hour by hour process at this point. Each day counts. We sincerely thank everyone for the outpouring of love, prayers, phone calls, text messages, food, flowers, encouragement, help with our animals at home, and visits. I may not have responded to every message, but we’ve seen them all and the love is overwhelming. We feel the prayers. Already, God is answering prayers that we didn’t know would be possible just days ago.

We’re beginning to try to wrap our heads around what preparing for a special needs baby is going to look like. Again, I don’t have those answers. But I know that I don’t have to. And I know who does!

How you can continue to pray for our girl:

  • That her body will continue to develop in utero, as close to that 36 week mark as possible. 
  • That her heart would be MIRACULOUSLY healed. Formed perfect, leaving even the most experienced doctors stumped.
  • That Chris and I would trust. Simply trust.
  • That any necessary preparations would be taken care of without stress or fear. 
  • For wisdom for each of the doctors that we are seeing, to know what’s best for our girl.
The Words No Mama Wants To Hear