Fighting a Cold Pt 3

I wish I had news, but Sunley is just not getting better. I'm as prepared as I can be for whatever news we get at her appointment in Houston in 2 weeks. I'm also trying to get out of survival mode and start making this our new normal.

Photo by Lori Faber

I'm trying to be a little more productive each day, and find our new groove. I have to reset my mind so much throughout the day, and redress myself with the armor of God over and over and over. Knowing we may be getting another curveball soon is quite heavy, and the waiting is always the hardest part.

Yesterday, I decided to load up all 4 kids and our oxygen equipment and go to Target, just to prove to myself that it could be done. I've been missing so much the everyday outings we used to take, and a grocery trip with a cart full of kids sounded so nostalgic. I had a very low bar for success, and we just took our time. We parked right next to the cart return so that I could wipe it down and fill it up with our equipment without having to drag it all in. We very slowly made it from the car to the cart, and stopped at every aisle the kids wanted to check out. It was a long, unrushed grocery store trip and it was perfect. The kids wanted to do the self-checkout, and so once again we took our time letting each kid have a turn while Davis drank a bottle. Toward the end, Davis started crying, but still we took our time and big sisters played peek a boo with baby to pass the time.

A woman at the station next to ours made a point to ask me how I wasn't falling apart. Four kids is no easy task in target, and I'm sure she noticed the oxygen and equipment on Sunley. I just told her, "I am falling apart, but Jesus is filling in the gaps." And I say none of that to boast, but just to share that it's possible to be completely falling apart and completely okay simultaneously. I don't have to be "on" because I've given Jesus the heavier portions of the load we're carrying. And I've once again stripped away all of the extra in my life. I've un-volunteered for things, accepted help (babysitting, meals, etc) from all of our angels, and leaned even further into prayer. I am so far past empty that I have no choice but to fall on Jesus. And that's a pretty fulfilling feeling.

So many have asked how to help, and I'm happy to tell you that I've been working for a few years on an idea for a fundraiser for Sunley's hospital. I'll have all the details worked out soon, and I can't wait to share it with everyone. This idea has been brewing for quite a while, and I can't wait to put it all into action. We are so blessed to have such an incredible support system here and around the country (and even in a few other countries). Thank you all for the prayers, and please do not stop praying.

I'm not ready to give up on praying for a non-surgical option for Sunley. I do NOT want her to go through yet another open heart surgery right now. I know that day will come, but I'm praying it's not that time for us.

Fighting a Cold pt2

It's hard to believe that all of this started almost a month ago. We haven't had a normal day in so long. At her worst, Sunley spent three or four days on oxygen all day and in my bed, only getting up to go potty. Even on 5L of oxygen, if she moved at all she would desat as low as the 40s. It was very scary for us, and it feels all like a blur. Her saturations shouldn't get below 70 or over 88, so it's a constant game of adjusting her oxygen support to keep her in range - absolutely a full time job. It doesn't help that technology still has a LONG way to go in getting accurate saturation levels. Those pulse oximeters can be so finicky! Thank you to everyone who texted, prayed, sent meals for us. We had plenty of help, and the load felt that much lighter. My mom asked if it would be helpful for her to come, and I don't think I even let her finish her sentence before I said YES! She arrived yesterday with her extra set of hands, so I know this week will be even easier. Our big two kids have been amazing troopers, and so incredibly compassionate and empathetic with their sister. I am very proud of them. Davis doesn't seem to care, as long as she gets fed ;)

We are crawling slowly and steadily back toward our normal. Sunley is doing much better than she was a couple weeks ago, and every day is just slightly better than the one before it. She still has to do oxygen to do any sort of movement at all, but when she desats, the numbers aren't quite as low as the were. Sometimes the oxygen keeps her from desatting at all. (When I say desat, I mean her oxygen saturations get below 70. Her normal range is 73-84)

I spoke to Sunley's cardiologist in Houston, and she does want to see her now instead of next March, like we originally planned. Our appointment is at the end of July. They'll do an echo and all the heart things, and we are praying that nothing has changed since her last appointment. Please pray with us that it is not time for her Fontan surgery. We absolutely want to wait another year. I think we are all a bit surprised how hard her body was hit by nothing more than a low fever and a runny nose. She only had symptoms for a few days, and they were so mild. So that's a bit alarming, and a good reminder for all of us that we were doing this whole germaphobe thing long before 2020, and we still need everyone around us to use caution when they are feeling sick. That used to be an easy conversation to have -- now it seems to be offensive and politically charged. How silly.

We are so ready to see our spunky girl on the tball field again with her big brother, but we know we need to be patient and let her body recover at its own pace. We've let her push herself (almost) as much as she wants, and we just add oxygen and let her choose how active she wants to be. But this girl has no stop button. Which makes me proud, but also has me watching closely. Go, Sunley Summit! (But you don't have to summit EVERYTHING).

Sunley has Hypoplastic Right Heart Syndrome. Specifically, her anatomy is no right ventricle, DILV/DOLV, TGA. She has had a PA Banding, atrial septostomy, Bidirectional Glenn, and a DKS procedure. We are expecting her to need a Fontan next.

Fighting a Cold

Sunley,

Your sweet, snuggly little chubby perfect 3 year old self is snuggled in my lap while I write this. You are strong. And I'm sorry that you have to be. When we were given your diagnosis, we prayerfully made the decision to fight for you before you could fight for yourself. We weren't always sure that we were making the right decision, but once you were born, it became clearer each day that we had chosen correctly, because of your fiery spirit. You too would have chosen to fight, if you'd had that choice. I will always give you the space to push yourself as far as you'd like. But anytime you don't feel like fighting, you can crawl back into my lap and I will do it for you. There is an unseen army fighting for you, and I call on them often.

Love, Momma

Sunley is not doing well, but we are still at home, thank the Lord! I visited with the TCH team today, and we all agreed that she wouldn't be getting anything at the hospital that we can't already do at home.

Most of you already know that two weeks ago, Sunley had 2 complex febrile seizures. We called an ambulance and went to OU Children's. We were only admitted for 24 hours, and they ran all the tests we needed to confirm febrile seizures, and not something more severe. She didn't have any more fever after that, but on Tuesday showed symptoms of a minor virus — runny nose and a little bit of a cough. Since then, her symptoms are basically gone, but her saturations have continued to get worse and worse.

Sunley typically has oxygen saturations between 72-82 (Healthy people stay around 97-100). Right now, if she walks across the room, she dips into the forties. We've seen as low as 35. This is with VERY low activity. So right now, she is on oxygen all day instead of spot oxygen, and any getting off of the couch is a planned activity. We get the oxygen turned up, and monitor her numbers the whole time. Going potty is a big event, too. All this because of an itty bitty virus that she picked up somewhere.

We are basically doing the hospital thing, but at home. And together is always better, so we are thankful for that. But we are tired. Sunley is frustrated. And I'm having to let go of perfect parenting again. So much tv, no cooking, and just no moving forward yet. Summer sports is on hold for Sunley, but not for Ruger and Hadelyn -- unfair for someone no matter how I handle it.

We need to see improvement soon for Sunley's numbers. I don't know what the plan will be if her numbers don't go up, and I don't want to know.

I've had to fight so much the mama bear urge to rip off all the cords, take this girl (who feels FINE) outside and let her play.

I never think about the before, but today I was in the middle of an adorable, giggly, diaper change with Davis and just blurted out "I want to go home," and burst into tears while Davis laughed at me. I thought about our first house in Midland, my lime green front door, the funky fireplace that I tried and failed to recreate in our new house, the add-on that we were planning on doing after baby number 3. I thought about how we could have brought Sunley home to that house and continued life as it was. I thought about what summer for a 3 year old "should" be. For a little bit, I just let myself feel sad and feel sorry for me and for Sunley.

And then I stopped crying. I said "okay" with a deep breath that felt more like a prayer, picked up my baby, and walked back to the couch to check Sunley's levels.

I wouldn't trade this for all the lime green front doors in the world. And that's the secret gift of being a heart mom. Deep sorrow. Deeper joy.

Sunley's Motorcycle Birthday

Today we celebrated Sunley’s third birthday! I really can’t put into words the very complicated emotions that birthdays bring in our house, and tonight I am too tired to even try. All I know is that today was special. A week or so ago, I started trying to find some kind of biker club that could bring a few motorcycles to her birthday party. I found Bikers for Christ on Facebook, and sent them a message. They responded quickly, shared my message, and before long, we had over 200 bikers wanting to participate in Sunley’s birthday drive-by. My phone was blowing up, and Bikers for Christ took charge and organized the whole thing for us. Not everyone was able to make it, but I think we ended up with over 50 bikers altogether! I wish I could have met each and every biker, but I know there were some from as far as Kansas who participated. Some had amazing medical stories, many had very powerful testimonies, and ALL of them showed up big for our Sunley. They brought several personalized, encouraging gifts for our sweet girl. I am going to have quite a difficult time trying to thank everyone. Harley Davidson in Edmond donated gifts, a Catholic church in Moore presented us with a beautiful cross to borrow for a while as we need it, one sweet man made some origami pieces with encouraging notes, another brought the cutest stuffed unicorn, and there were more! At the conclusion of the drive, Bikers for Christ presented Sunley with her very own motorcycle. She just kept squealing with delight and has ridden it all afternoon. 

Ruger and Hadelyn showed their true colors in being 100% on board and excited. They are the most amazing big siblings. And in true Davis form, she just chilled out and was a complete trooper. I know we are blessed to have such a close-knit family and I am so grateful. My mom made the most gorgeous birthday cookies for Sunley AND for the bikers, of course!

I have to especially thank Lori Faber, too. I called her last night and asked her to come take photos on my camera so I could actually be in the pictures and enjoy the day. Anyone who knows Lori knows how much she just GIVES of herself. She did the same when Sunley was born and dropped everything to be with me. Lori, you are one of my favorite humans in the whole world. And you have a gift.

I couldn’t help but let myself cry during the parade of bikes. I wasn’t expecting to be emotional, but I was just completely overcome (again) with how God uses us ALL to encourage each other, when we make ourselves available. Today, 50 strangers made me feel even closer to my Jesus, and made me feel just a little braver for whatever the future holds for our little biker.

I am forever grateful to our biker angels. And something tells me we haven’t seen the last of this amazing community. I am beyond humbled. We have the most unbelievable support system.

I will never forget this day.

Cupcakes

Sunley’s THIRD birthday is fast approaching, and we are celebrating BIG. We have more than just a birthday to celebrate! Sunley recently had a check-up in Houston at TCH, and we really thought that we may be told to start preparing for her Fontan procedure. Instead of needing surgery this summer, Sunley’s echo looked strong enough to go a WHOLE YEAR between appointments! Lord willing, our girl will have no pokes or hospital trips for a year!! We are blown away. I was praying so hard that she wouldn’t need surgery yet, but I never would have dreamed that she would be doing so well. Yes, she will still need surgery, but hopefully we get to skip managing a toddler’s open heart surgery during the COVID craziness. Now we are praying for the health crisis to be over before her surgery, so that we can be there together as a family, and not have to switch off caregivers, or pass up visits from siblings. God is doing big things every day, and I am believing He will give us this win. Why not pray for another year?! Am I being too hopeful? Peace. I will pray for peace with the timing of her next surgery, whenever that may be.

I also have another God-is-here story to share: In January of 2018, when we got Sunley’s final blow diagnosis (after a LENGTHY misdiagnosis process), we left the exam room and sat down to eat lunch at the cafeteria. I remember the exact table where we sat, as I would often visit that spot in the following year when I needed to feel physically close to Jesus. I got a phone call, but missed the call, so it went to voicemail. That voicemail was a friend who had just heard our news. He poured out his heart in that voicemail, and I think it was the first time I truly experienced what it felt like for someone to “speak life” into me. His words were PERFECTION, and absolutely everything I needed to hear. That voicemail physically, emotionally, and spiritually built Derek and me up in a very low moment. I was weak, I listened, and I became strong. Of course, I meant to save that voicemail, but somehow I lost the recording, and I was devastated. Recently, I reminded Derek of it, but it has been so long that I had forgotten the exact words and it made me so sad that I had failed to save it. I poured over all the old files I had, every recording, every video, through 3 hard drives, and I just couldn’t find it. It was gone. I prayed again and just said “God, I know it’s gone, and I know You don’t work this way, but I really would like that voicemail back.”

Guys. Not two days later, I got an alert on my phone that said something like Your phone memory is almost full, click here to delete old files. And there it was. I could barely breathe. I called Derek in the room, and we listened to it together and cried. Derek said, “I can’t believe you found it,” to which I replied, “I did NOT find this — GOD literally threw it at me!”

Of course, I called that friend and shared my lost coin story with him. I knew I didn’t NEED that voicemail back, but I sure wanted it, and I am still so overjoyed that God gave it to me! My friend told me, “Sometimes, God’s fatherly love shows up in the same way a grandfather gets joy by handing his granddaughter a cupcake. And you have been given a cupcake.” That voicemail, Sunley’s last checkup — God is giving us more than we could possibly had ever hoped for and I am fully absorbing that joy. Praise God for cupcakes.

(You can hear the voicemail in the beginning of this video)

Confessions of a Special Needs Mama

Today, I’m doing a guest blog for Mothering Rare and her “Confessions of a Special Needs Mama” series. Mothering alongside any sort of medical journey is a bittersweet mixture of deep loss and deep joy, and you absolutely cannot have one without the other — the loss makes the joy bigger, and the joy makes the loss deeper. And Jesus fills in the holes left in the in-between.

Confession: I am always bracing for the next emergency.

Sunley looks blue. I wonder if she’s grown more collaterals. Is that even a bad thing? The doctors said they could cauterize those off…but what if she needs them, and the doctors get rid of them, and then she never has the saturations she needs and it puts more pressure on her liver, and she ends up needing a transplant, and we have to move to Houston all over again?

Sunley is taking a really long nap. I wonder if she’s started her decline. And she’s been really snuggly this week so I wonder if that’s just her personality or if she’s getting tired and I’m missing her desats. Should I check her sats more often?

Sunley has a fever. Maybe I should sleep in here tonight and monitor her saturations, just in case. What if I put her to bed without monitoring her, and something happens? I would never forgive myself.

It won’t hurt as badly if I’m expecting it. If I plan for the worst, then I can just be pleasantly surprised when it doesn’t happen. If I get my hopes up, then I’ll just eventually become a disappointed fool.

Welcome to the “less fun portion” of my heart mom brain.

I know everyone’s medical journeys are different, and our family’s mostly invisible disease certainly keeps us on our toes. I feel like I need to clarify, I am not sad or scared all the time. Actually, I’m not sad or scared very often at all. Our life is really happy, just like anyone, and has moments of joy and also moments of pain…just like anyone. But there’s an asterisk that follows us around — rarely making itself fully known — but always there, ready to burst forth at any given opportunity.

I live in a constant state of what I call “go mode.” I am never unaware of how much medication or oxygen Sunley has available at home, and I keep a list taped to my pantry door for an overnight hospital bag. I don’t mention anything when I see Sunley turn blue or show some kind of symptom, because I don’t want her siblings and friends to always be so aware of it. But I see it. I see it every time. It’s still just as painful as the first time I saw her struggle to breathe, but the pain doesn’t hold as much control over me as it once did. 

I will never “accept” her illness, just like I won’t accept the brokenness of this whole world. We are not made to feel comfortable here, and I certainly don’t. Put it this way: I’ll get over her diagnosis when she is cured. In the meantime, I can’t help but feel like I need to brace myself for impact, should things not go well with Sunley’s heart. I don’t live in a constant state of fear because I don’t really have room for fear. But, I do avoid “counting on” things that a mother typically wouldn’t think twice about. I can’t really list those things out, because there are some things that heart moms can’t say out loud.

I know that a bad outcome with Sunley won’t hurt any less, regardless of whether or not I brace myself for it. I just don’t want to feel surprised if she ends up needing a transplant, or if her Fontan still doesn’t give her 90s saturations, or if she ends up getting COVID, or the flu, or a bad cold. I know hurt is hurt, and I know I can’t control Sunley’s outcomes, but I also think that I’ll stay in go mode just in case. 

If you are curious, you can read about Sunley’s full diagnosis here.

If you’d like to start at the beginning, start here.

Surgeries So Far

Part 1

Sunley has had 8 NG feeding tubes through her nose, countless IV's and even more unsuccessful IV placement attempts (enter Momma Bear), too many drugs to keep track of (I tried), tons of oxygen support including 3 intubations (not bad for a single ventricle heart kiddo!), 1 interventional Cath, 2 open heart surgeries, and I've actually lost count of her hospital admissions. I believe she's had 7 hospital admissions, and 3 oxygen interventions at home. She has been intervention free (I'm including just basic oxygen support) for a whole year since Christmas, and really seems to be thriving! We thought at the beginning of winter that we were starting to see the decline, but she has definitely bounced back to the point that we would be shocked to hear that it's time for the next surgery. We think her decline must have just been the onset of cold weather, or her body fighting some mild virus. I was seeing brief drops in her saturations  into the high 50s, but they were SO brief and never needed medical attention. Lately, she has been having oxygen saturations in the high 70s even up to mid 80s! 

Sunley will have another surgery, but we hope to put it off one more year, if her cardiologist thinks she can wait that long. She will have the Fontan procedure. This is the last planned open heart surgery for Sunley. Unfortunately, it doesn't actually fix anything; The Fontan adjusts her circulation yet again to force her heart to pump in a different way than ours, with just her single ventricle. This surgery will slowly wear out her liver, which is why it's hard to get too excited about it. There are no really great options for a single ventricle kid, but this is certainly better than the alternative...as long as it works as planned. 

Our hope is that Sunley will have a smooth Fontan surgery, a smooth recovery, and will finally get to experience oxygen saturations in the mid to high 90s! That would be such a beautiful number to see. We hope that her heart, as well as her other organs, will adjust to the new pressures created from the Fontan circulation. And in the meantime, her momma will be doing everything she can to help the research being done for Fontanners. More on that another time!

If the Fontan doesn't go as we hope, it is possible that Sunley could need a heart transplant, or a heart and liver transplant. But we seem to be very far from that outcome, and there is no reason to believe that a transplant will be her story. I always thought a transplant was a fix. I had no idea that your body always ends up rejecting the heart eventually, or that you had to take so many daily anti rejection meds. I also didn't realize how many people died without donating their organs. You can probably guess that I have a pretty strong opinion on that, especially as a believer who definitely won't be needing this body past her expiration date.

I digress, as always. Sunley's next surgery should give us SO many more years with our girl, which is the only part of the whole thing to which we can look forward! For now, we are enjoying all our days with our very spunky, very normal toddler.

Sunley's Current Diagnosis

Hypoplastic Right Heart Syndrome is the general diagnosis that Sunley has. It's an umbrella term, which can include several different combinations of heart defects, which means that kids with the "same" conditions can have very different cardiac anatomies, with very different surgery plans, and very different outcomes. Sunley was born with a few specific heart defects:

Transposed Greater Arteries - The aorta and pulmonary arteries usually cross. In a healthy heart, the PA rises out of the right ventricle and carries blood to the lungs, while the Aorta rises from the left ventricle, carrying blood to the rest of the body (arms, legs, etc). Sunley's Aorta and Pulmonary Arteries do not cross. While the heart is forming, which is around 5 weeks gestation (usually before mom even knows she's pregnant!), one of the first things that happens is the heart "folds" on itself. This is when the arteries cross, or in our case, don't cross. A few doctors suspect that if Sunley's arteries had fully crossed, the rest of her heart may have developed perfectly. And they almost did; they overlap, but just don't fully cross. I will always wonder if there was something environmental that caused this. Because heart defects happen so early on, there is VERY little data pointing to the underlying causes. 

Sunley also has hypoplasia (underdevelopment) of the right ventricle -- Actually, she has NO right ventricle at all. Both arteries feed out of and into the left ventricle, which is extremely rare. This is called Double Outlet Left Ventricle and Double Inlet Left Ventricle. There was some concern fetally that she had some issues with her mitral valve, which connects to her only ventricle, but that has remained mild enough to be left alone. 

All of this is "umbrella'ed" under the term Hypoplastic Right Heart Syndrome. When you Google that, the drawings look nothing like Sunley's heart because you can obviously have so many different combinations of defects that are still categorized as HRHS. 

We were very blessed that Sunley's arteries developed well -- there was no stenosis or atresia, which meant that she did not need the Norwood procedure at birth. Instead, Sunley's open heart surgeries included a PA Banding surgery (MUCH less invasive than the Norwood) and the Bi-Directional Glenn with a DKS procedure.

Part 2

Cloak of Invisibility

Growing up in church and in a Christian school setting, I always wondered to what big things God would call me. My school kept a pretty decent rotation of visiting Christian speakers, and they all had amazing stories of overcoming the "big sins" and choosing to follow Jesus. They had all gone to do great, big things, it seemed. I needed a superpower. I often wondered how I would ever develop a love for Jesus if I continued to follow the rules. I know that sounds silly, but as a kid, my faith seemed to be so quiet -- I remember feeling, even into my adult years, that my faith was dismissed simply because I had the same basic spiritual beliefs as my parents, and I never really rebelled against that. Surely, God would call me to something big. I loved Him and obeyed Him, after all.

I fell in love at 17, so naturally I started dreaming about what God would call us to do together. Maybe we would be missionaries, or maybe we'd adopt 10 special needs kids and save them from the perils of state facilities. Maybe we would start a hugely successful nonprofit together. Or maybe I would find some way to serve God through travel photography, because that was certainly different and fun.

I finally realized, at some point in between getting married at 21, and having 4 kids over the next 9 years, what all of these idealized callings had in common: they were very fitting for my Enneagram 7 personality, and they were things easily SEEN by others. Being "called" to do such big things would not be hard for me, like they surely are for some people. They required no unattainable superpower. I love uprooting and spontaneously going on a new adventure. I don't mind being the center of attention (holla, middle kids everywhere). I love giving any sort of speeches or presentations. And I love the idea of starting new businesses from scratch. None of those things are bad at all -- In fact, God gave me those gifts and they all work on service to Him when I use them appropriately. But, God is calling me to something that -- for my personality -- is very difficult. He does this with people doesn't He? Moses comes to mind first. (He was probably an Enneagram 9, but God made him act like an 8.) God has tasked me to the invisible, quiet work of motherhood. That is my big calling, at least for now. It requires a superpower for sure: a cloak of Invisibility — something I don't have without His help, and something that I wouldn't naturally choose for myself. He is not asking me to travel (hello, pandemic). He is not asking me to give speeches at Christian schools telling young kids how to find Jesus like I did. There are so many big things that I've concocted in my head that I would love to do for God and for others -- But if an act of service that I want to do would be a big disservice to my family, then today is not the season for it. Maybe there will be a season for me to accomplish some of the things I'd love to be doing now. But today is very clearly my season to look inside the walls of my house for His calling -- which is less like audible words, and more like a mom-gut feeling.

My job is to be a little bit invisible right now, and be creative with ideas for service -- Look for ways to serve with my kids instead of all by myself. Things like sending cards, care packages, and meals are the quiet ways we have been able to serve safely during the pandemic. Teaching my children the joy of writing letters, cleaning up after oneself, and anonymous service.

Through the stillness of quarantine, I have been given the gift of what I call my "mother worship time." Worship does not happen on a stage for me -- it happens when I choose laundry over watching a movie, cooking dinner for my family even though my back hurts, APOLOGIZING after I lose my temper (this happens way more than I'd like to admit). Most of the time, no one sees mother worship. You don't see a freshly cleaned floor after someone dumps legos on it. No one hears me talking to God in my head, asking for patience, thanking Him for what we've been given, or trying to memorize verses. I know my calling looks small to the world. But I'm not invisible to my Creator, and my identity is in Him; Not in the temporary worth giving by a worldly stage. I wish I could go back and tell my kid self that you don't need a big turning point moment to fall into a meaningful relationship with Jesus -- you just need time to find Him in the beauty of the mundane. I know I can't be the only one who feels this way. And I won't say "I see you," because maybe I don't. But we aren't home yet, and our invisible work here is not in vain.

Thin Places Have Laundry, Too

Though I haven’t updated here in quite a while, life has been moving full steam ahead. Each time I try to write, the emotional weight of all the things I’m currently juggling is too much to process — not to mention, there is always laundry to do. What a year it has been for all of us, right? I can’t speak for you, but I know our circle has definitely gotten a lot smaller this year — In some ways, we’ve returned to older ways of living, slower ways of living, and there is both joy and loss in that. We have lost family members and friends (some to COVID and some to other tragedies), but also added a new baby to our little brood. We are in the very middle of building a house that we designed ourselves, as well as our first year of homeschooling. We are preparing ourselves to possibly hear that Sunley needs surgery soon, and all of the above in a very turbulent society during a global pandemic that has somehow become politically charged. 

Maybe you’re like me and feel completely overwhelmed. But the beauty of this is that Jesus is always there to lift us out of our drowning, just as He did for Peter. And many days, I am definitely drowning. I start out eager, like Peter, and then quickly lose my footing. There’s been a lot of repenting, refocusing, and restarting in my days. And I think it’s ok for me to just sit in this space of an unknown future, as long as I keep Jesus there with me.

On that note, we are seeing just the very beginning stages of Sunley’s body starting to struggle again. I don’t want to say it out loud, as if saying it will somehow speed up the process, but there it is. I very much underestimated how gut-wrenching every little desaturation episode would be. The next surgery is coming — it will happen, sooner or later, and it was always the plan. But she’s not a baby anymore. Sunley is a RIDICULOUSLY spunky 2 year old who wrestles her brother, sings at the tops of her lungs, and tells tall tales about snakes biting her neck. She sprints to the door when I come home from a meeting with our builder (that is LITERALLY the only place I go), and comes out of her room at bedtime approximately 6,402 times a night, and tells us she will take a spanking instead of a nap, please. It was hard to send my baby to her surgeries, but something about this is harder. I don’t know if it’s just that she’s older, or that this is really the last “big” thing doctors can do for her heart — and that’s a reminder that this will never go away.

I’m rambling.

To summarize, I have a lot of big feelings about her impending “decline,” and I am not ready to be done with having a next-step plan. I fully expect the Fontan to go well. But if it doesn’t go absolutely perfectly, with her hitting 90s saturations, I’m not sure how I will process that, and I’m really not sure what that would mean, medically. 

For other heart moms reading this, her only current symptoms right now are increased cyanosis, and desaturations while walking or playing. It’s obviously impossible to get a read during movement, but I’ve caught her immediately afterwards as low as 58, but usually in the mid to high sixties. She always very quickly pops back up to her normal 78-81, so we aren’t using any oxygen with her. And for any not-heart moms reading that, President Trump had to go to the hospital when his oxygen was at 95. Sunley is wrestling her brother with 60s. That concept always amazes me. She isn’t showing any symptoms of being tired or not being able to keep up with her siblings, which has to be a good sign! Will you please plead with God alongside us to give us one more year before we have to do the Fontan? We are so hoping for that news in March at her next Houston check-up.\! We will gladly do whatever is best for her, but for her sake and ours, I would love to be able to wait until she is 4, Davie Lu is weaned, and I especially would love to wait until after the medical world has a better handle on this pandemic. Right now, most children’s hospitals are (understandably) not allowing siblings in as visitors. I know that sounds like a small thing, but the less separation we can have with our kids, the better. The separation trauma they experienced was real, and has had lasting consequences, and I’d like them to relive that as little as possible! I won’t go into a lot of detail about the Fontan, mostly because I am still learning about it, but it has a lot of drawbacks. Necessary, obviously, but it really beats on the liver while helping the heart. Another reason I’m not looking forward to it, though am also grateful for it!

All of that may seem very heavy and sound doom-y, but there’s something very beautiful about being allowed to see the brokenness of the world. My daughter is perfect. Allow me to reiterate as a non-biased observer: She is PERFECT. And this world has so much pure vileness. It’s not perfect enough to serve her heart as it was formed. There’s something about being in this world of CHD that makes the wholeness of God and His promises so much nearer and so much more glorious. I’ve described it before as forever living in a “thin place” — a place where the veil between heaven and earth is thin — so thin that one can sense it, and almost hear the songs in heaven. I am constantly thinking about the day when Jesus finally takes us all home. Won’t that be such a relief?

And when Satan tries to whisper fear, hatred, or bitterness, God’s promises are fulfilled by the Scripture that He has written on my heart. I have an answer for every lie with which Satan tries to distract me, and that answer is always wrapped up in a story of victory. 

I am struggling this year, and I know I’m not alone in that. I’ve had more just “emotionally bad days” this year than any other year I can recall. But I’m struggling with Jesus, and not without Him. He hurts when I hurt, and He uses my conscience to correct me when I take out my stress on the wrong enemy. I am walking through hard days, but they will not last forever. And I am determined to not miss out on these sweet, slow days with our little family — in many ways, tucked away from the world and all of the emptiness it has to offer. There is fullness in our home. And much, much laundry. Always laundry.