Sunley's January 2022 Check-up

Sunley had a cardiology check-up today in Houston, and it went so well! She really missed her siblings today, and kept asking for Sissy and Brudder, but overall she was so brave and funny with her doctors. We love seeing our heart family at TCH, even for these super short visits. Everyone who has ever talked to me about our experience knows how special Dr. Ayres is to us, and we are always so happy to see her. One of the nurses there today gave Sunley a handmade pillow, and it absolutely made Sunley’s day. She kept it with her for the whole trip. What a thoughtful, sweet thing to do. Sunley loved watching the echo of her heart this time, and it reminded me how she used to watch her numbers on the monitor as a baby. She told me before he started, “I think my heart will be yellow.” And behold, while measuring some fluid, a flash of yellow popped up on the screen along with the typical red and blue “stuff,” and Sunley whispered, “I knew it.” Yes, Sunley. Of course your heart is full of bright, yellow sunshine. We already knew that, echo or not. It was fun watching her be more engaged in the whole process. Seeing her start to ask questions about what is happening already gives me confidence that someday she will be able to handle this all on her own (Unless she still wants her mommy, which is fine by me).

Surgery is still on for April 19th with Dr. Heinle (J-Dawg…still trying to make that catch on), and the doctors will get together when the date approaches to decide whether or not she needs another cath before surgery. I think it is probably unlikely that a cath will be in the works, but we’ll do what we have to do. I didn’t ask much about pushing her surgery out further. I think that could have been an option, but it just feels like the right time. Sunley is starting to get winded more easily, especially when going up stairs — But let me tell you, that girl does NOT give up easily. “No Momma, I can do it” is an extremely frequent phrase in this house, and I’d be lying if I told you it didn’t make me really proud. I give Sunley a lot of praise when she listens to her body and slows down or asks for help, but it’s rare that she does this. She is truly a “Firecracker” (this road name was appropriately given by her motorcycle buddies — They even sent her a patch for her motorcycle jacket). All that to say, her body is showing us that it’s ready for this, and we don’t want to wait until she’s really struggling again, like she was in June. This will be her third open heart surgery in 3 years, which doesn’t include her two interventional cath procedures. Girl is a trooper.

Sunley was really nervous about going to the hospital this time, and her siblings had a REALLY hard time letting us go. Momma had a hard time, too. While I’m (obviously) insanely grateful for how things turned out after Sunley’s cath in August, that 3-month period of watching her body be so weak was very, very hard. I knew that we would get through it, but it was very heavy and very sad. It’s frustrating, but I feel so guilty any time I admit to having trauma from all of this, because I know so many people that have been through situations that are so much WORSE. I know of someone whose 2 year old had their 7th open heart surgery this month, and I wouldn’t have to look far to find others who have been through even more. Nonetheless, the gift of being a single ventricle heart mom comes with a unique heaviness. The same could be said for being a heart sibling…and of course for being a heart warrior. I was surprised at my reaction to this upcoming appointment. I wasn’t expecting any sort of bad news, and yet I just felt so scrambled in the week leading up to it. I felt like I could barely function — Couldn’t keep my to-do lists straight, and could barely focus in the evenings. Any time I thought about this appointment, my chest felt tight and I would start to feel nauseous. Maybe it’s just the finality of completing the single ventricle plan with the Fontan that feels so major.

Whatever the case, it’s been a hard week, and I’m glad that this appointment is behind us. We have 3 months from today to get ready for what could be Sunley’s last open heart surgery (unless they someday come up with a BETTER option than the Fontan!), and I have a very long list of things I’d like to have done beforehand. Cue my Enneagram 7 self putting too much on my plate. Who knows what will get done and what will haunt me in my dreams as a half-done task. What an adventure this will be!

I plan to post more in February, with a lot more details about what this surgery is, why we decided to do it now instead of later, and why it’s not a great solution forever. We also have some really exciting things happening between now and the Fontan — T-shirts, motorcycle friends, and some things regarding our fundraiser through Write With Light Project, which is in the process of becoming an official non-profit. I can’t wait to see where all of this takes us! Thank you all for the prayers. They continue to bring our family so much unending strength.

Go, Sunley, Go.

There Was Evening

Life has been a bit of a whirlwind lately. We typically keep a pretty slow pace, but ever since Sunley got sick in June, things have been so incredibly nonstop. The two oldest kids started soccer and Derek is coaching both teams, the house build has been “quite messy,” and I’ve been getting organized (well, trying) in preparation for next summer’s fundraiser. Oh, and there’s the whole open heart surgery thing coming up in April.

I don’t think we are meant to be so incredibly busy, though I know this is just for a short season. The house will soon be done, the surgery will be behind us, and our commitments to sports will reduce again — all in time. I have found it to be so important to keep space in my daily life, AND have found it equally important to be wary of what I put in that space (I’m looking at you, Tik Tok). One thing that really helps me to keep on keeping on is a little ritual I started several months ago.

I have to share a disclaimer first: This is all very “flowery,” and is much easier said than done. I do not do this on a perfectly consistent basis, but I’ve stopped considering that inconsistency to be a great failure. Several months ago, the kids and I were going through the days of Creation, and I was noticing yet again that “there was evening, and there was morning: The First Day.” I’ve always thought it was interesting that evening is listed first.

I have a VERY hard time staying “on” for the kids in those last hours before bedtime. As soon as we finish dinner, all I want to do is crawl into bed, scroll on my phone, and detox from all the noise and all of the “Mom, do bats have feet” remarks and questions. I know those whole-family minutes are precious and fleeting but after a day of homeschooling, cooking, and laundry (which I definitely do every day, and don’t ask Derek), I am in need of a refill. So, I took a note from Genesis, and I have implemented a routine of starting my days in the evenings. I have an alarm on my phone that goes off as the sun is beginning to set, and I make a point to go to my bathroom while Derek takes over with the kids and wash my face, change clothes — start my day. It’s nothing more than a change in mindset, and it really does make a huge difference for me. If there’s time, I will read my Bible, listen to music, or just sit on the porch swing as the sun goes down. I do not let myself fill this time with anything that does not lead my mind to Jesus. We don’t always have a magically perfect evening after this, but it at least creates space for me and my Lord to be together, just the two of us, before I jump back into the service role where He has called me to work.

With the crazy-busy seasons of holidays, family vacations, and school activities coming up, I really wanted to share this little routine. I wonder if other people may find it helpful as well.

“And God said, ‘Let there be lights in the vault of the sky to separate the day from the night, and let them serve as signs to mark sacred times, and days and years, and let them be lights in the vault of the sky to give light on the earth.’ And it was so…There was evening, and there was morning — the fourth day.”

Fontan Scheduled

First of all, thank you everyone who has signed up to host a lemonade stand next summer! If you haven’t yet signed up, no worries — the deadline is not until early spring. I’m working on lots of things behind the scenes, and will soon have ways to donate and contribute to the fundraiser.

We have a tentative Fontan date! April 19, 2022 is our penciled-in date for Sunley’s next (third) open heart surgery. I will post more details about the procedure when it gets closer, but for those of you who are familiar with it all, we are expecting a non-fenestrated Fontan, which means that we are also hoping for pretty high saturations.

Sunley’s Cath procedure she had on August 11th seems to have benefited her. The saturation numbers still get low when she’s playing (not quite AS low), but clinically she looks much better and has more energy and less cyanosis! The high numbers we saw right after her cath (89-90) unfortunately did not hold like the doctors expected (can they please just stop making these optimistic predictions?!). But overall, I’m glad we did the procedure, as it definitely bought her more time before the Fontan. We have our next big checkup in Houston in January, where we will reevaluate the plan.

In the meantime, we’ve been a bit “hunkered down” again, surviving and trying to avoid this new surge of COVID and RSV going around. I find myself wondering if there will ever be an “after COVID,” and I know I’m not the only one feeling desperate, and even blood-boiling angry at times. But I remember the last time I felt this desperate, right after being hit with the longevity of Sunley’s incurable diagnosis. I really thought our lives would forever be “less than” from then on — and I was SO wrong.

We met some new friends recently, and they asked me how we are even getting through all of this. I told them very simply that I think more about heaven than I do about here.

There is a HUGE difference in my mental state, in my mothering, in my prayer life when I am thinking more about this life than the next. We are designed by God to crave things that we will only receive in heaven. We are not supposed to be satisfied here. And yet, I sometimes make myself miserable trying to fill up while I’m still HERE.

If you have spent the entire pandemic just trying to force-steer things back to normal, may I humbly (because I’ve force-steered sometimes too) suggest that you slow down, and let God and this pandemic take some things away? If, for you, nothing good has come out of this pandemic yet, then I think you may have missed a great opportunity. And I’m speaking from experience, because I have definitely found myself pushing back at times. What if my kids never get to (fill in the blank) again? What if, What if, What if…

Most of those questions can be answered with a simple “Then God will fill in the gaps.”

Go ahead and give up “normal” — traditions, plans, vacations, maybe even some “important” social activities; Give it up. Let Him take things away. Don’t force the “normal” into your life based off of the fear of something new. I have quickly realized that trying to force my plans into this pandemic only creates more chaos, both tangibly and emotionally. Our family has lost during the pandemic. But we have also gained. And just like with Sunley and her never-ending heart journey: Our hope is not in the outcome, but in the One who provides hope. Slow down, give in, and let God WORK. We might be closer to heaven than we think.

The Write With Light Project

There is nothing quite like the experience of walking into a children's hospital. It feels like a sacred battleground. I'm sure walking in as a visitor feels different than walking in as a parent…and I envy what it must feel like to walk in as a nurse or doctor, ready and equipped to go to battle.

Inside those walls, I will often just sit and stare and try so hard to stretch my imagination far enough to move the veil and see what God sees inside those walls. Just like the hillside in 2 Kings, I would bet the hallways of a children's hospital are absolutely full of angels fighting all kinds of enemies, and comforting all types of patients.

God has not opened my eyes like I wish He would — but he has shown me over and over and over again pieces of the army He has provided for us. Every time I get an encouraging text, and offer to help, a prayer said on behalf of all of my children — I feel like I can almost see that army fighting my battles for me.

We are completely humbled by the help we have received. Four years ago, when we received Sunley's diagnosis, I began planning a fundraiser, called The Write With Light Project, to benefit a very special piece of Sunley’s team. The details have changed about a thousand times since she was born, and I'm doing my best to simplify it all with everything going on now, but I feel like it's time to deploy the army that God has built for us.

Texas Children's Hospital is the very first hospital dedicated to opening a “Fontan Go Initiative.” This will be a whole new sub-specialty of medicine that will fall under the umbrella of ADULT congenital cardiac care. Adult CHD care has not existed as a specialty until now, because only just now are these kids finally reaching adulthood! This Fontan Go Initiative will be the only place in the world focused solely on patients who have had a Fontan procedure and have lived into adulthood. The research and experience from this could DRASTICALLY improve Sunley's quality of life, as well as its length. It's hard to even put into words how absolutely magnificent this is for the future of kids like Sunley. Single ventricle heart defects are extremely rare — Sunley's specific anatomy is one that I can't even find on Google — and yet this hospital is dedicating an entire team to helping these kids. If that's not an army of angels, I don't know what is.

Will you please help me help my baby? On July 22nd and 23rd, 2022, I will be hosting a simple lemonade stand in Edmond, Oklahoma to raise money for this Fontan Go Initiative. All of the profits will be donated to this work. Will you please sign up to host a lemonade stand on July 22 or 23 in your town? When you sign up to host, you will be sent a “box of sunshine” containing all of the branding materials you need to market in your area and get the word out.

If you are unable to host your own lemonade stand, will you please share this video (below) and blog post with the world? We will also have ways for people to donate, as the fundraiser date approaches. My hope is that we could have a few stands going up all over the place in July, and with just a few people committed to making this fundraiser work, we could really make a difference for the futures of Sunley, and of every kid like her. Click here to sign up.

Click here to share the video.

Answered Prayers

Trust God's timing. Always. While Sunley was having her cath, our peaceful little Cul de sac in Oklahoma had an active shooter situation. No one except the shooter was hurt. He shot at a neighbor, shot up a car and shot at police before being shot in the leg and taken into custody. That's a lot more action than our little suburban neighborhood needs! Thank goodness we weren't there, as much as we play with kiddos in the front yard! Hadelyn saw it on the news and recognized our home of course, so I called to try and comfort her. It was unnecessary, because she had already determined that the man must have just locked his keys in the car and was trying to shoot a hole to get them out. It seems to have been caused by some mental health issues, so please take a moment and pray for him — pray that he is given the right balance of consequence and forgiveness; a balance that allows him to heal from it all. The world is broken, as if we needed a reminder.

Back to Houston! We arrived to the hospital at 8 am and Sunley went back for her procedure at 9:50. She was so brave, and we met a new NP named Riley who we absolutely loved! She's one of those people that just instantly gives you comforting vibes and I knew she would take care of Sunley if she got scared on the way back there.

The whole thing was about 4 hours long, and we got hourly calls. Dr Qureshi had to make access at the groin, and on both sides of her neck, so she has lots of boo boos to watch and keep clean. He was finally able to coil off one large collateral vessel. It seems to be the same one by her left svc that we first saw at OU Children's on my 30th birthday two years ago! So it has been growing since then, and was positioned so that we could not see it on her latest echo.

After Qureshi coiled that vessel, Sunley's sats stayed between 85-90 for the rest of the day! Of course, she was still groggy and resting, but the team was very confident that we will not see low numbers again for a while. I can't wait to watch her play and hopefully prove them right!

Derek and I were both surprised by how calm Sunley was in recovery. We expected a lot of resisting rest, but she was so content! When she woke up, she just barely opened her eyes and said “ice cream.” And she got it. Lots of it!

We made tshirts for our family to wear back when we thought we'd be doing the fontan this week. The phrase at the top of the shirt, “Silenzio Bruno!” is from the Disney movie Luca. Luca has a voice in his head, named Bruno, who makes him scared to try new or scary things. So every time Luca is afraid, he makes the voice quiet by saying “Silenzio Bruno!” Sunley has been saying it every time she has to put on oxygen at home, and every time she has to get a shot, or worst of all, take off medical tape/stickers.

She did so great, but taking off all the tape at the end was BRUTAL. She was begging us to stop, and we tried hard to let her give us permission, but it just didn't happen. Those are the traumatic parts for a 3 year old, and I often wonder if it's better or worse for me to be the one holding her down. We got back to the hotel some time after 9pm I think.

This morning, Sunley had her consultation with the surgery team. As long as this coiled vessel continues to hold up her saturations, we don't expect to need surgery before next spring!! This is a wonderful answered prayer! I am especially grateful because the hospital is having to make very tight restrictions again for parents and visitors, after finally allowing 2 visitors just a couple weeks ago. I have to reiterate, the people refusing to mask or get vaccinated are really putting these hospitals in impossible positions. We, the high risk families, are paying the price for the choices of others. I will gladly discuss my feelings about the vaccine in private, but AT LEAST masking should be a no brainer. No one debated the efficacy of masks before 2020. And we had virtually no flu or RSV season last winter because of all the masking and precautions. Oh, how I want to rant, but I'll stop here. Please wear a mask if you are choosing to forego or wait on the vaccine. I know it feels like it doesn't matter, but I can introduce you to hundreds of families who are directly impacted by your choice. I say that with no hatred — it's just a fact. Ok, NOW I'm stopping.

One of the things I'm most grateful for on this trip was that we actually did get to see SO many of our favorite doctors and nurses from over the years! I wasn't sure we'd see anyone, and we saw (almost) everyone! I am just so impressed by the compassion from the team at TCH. If you ever feel like you can't trust the medical world, well then I think you need to spend a little more time in this place. The medically complex world is an alternate reality full of heartache, and deep deep joy, where commitment and compassion is unparalleled.

We are home tonight. We walked in to a clean house with completed laundry and fresh flowers on the counter, and dinner in the fridge. All thanks to my sister and her mother-in-law. I could list about 100 other people who have helped us this week, in ways that probably felt small to them but made a lasting impact for us. God surrounds us with his mercy all the time. He is so so good.

Birthday Plans

Our Cath procedure is schedule for Wednesday August 11, my birthday! Woot. Due to covid tests and other consults, we need to be there August 9 (evening) through August 12.

The other 3 will stay at Tonya's house while we're away.

Hospitals are in a very bad spot right now, and this is a terrible time for anyone to be needing care, but here we are. They don't have a bed for her to stay on the 11th, so unless she's in very bad shape, we were told that it will be outpatient but we need to stay close by the hospital.

The hope is that during the Cath, Dr Qureshi will see a problem that needs fixing -- we are hoping that there are some collateral vessels causing issues. If so, our hope is that Qureshi will be able to coil those off, and this will hopefully result in higher saturations for now. If this happens, we will plan for a fontan surgery in the spring.

If the cath does not find a solution, then we will be having a difficult discussion with Dr Heinle, the surgeon, about what's best -- a fontan now when the hospital is like it is or a very diminished quality of life until the spring, not to mention a very risky flu season for us. I have no idea what he will recommend. Please pray for the doctors, nurses, and all of the scheduling staff. They are absolutely flooded with daily difficult decisions, and I wouldn't want to be in their very under-appreciated shoes.

Prayers. Somehow it will all come together.

It's Time to Say It

I have seen a record high number of posts today making light of covid, making fun of mask rules, and taking a stand against "fear." If you know me at all, you know that God has not allowed us to be consumed by fear. You also know that my choices during the pandemic have had absolutely zero to do with politics.

You already know that we are currently trying to find a place for my daughter at her hospital — and we will find it — But she would have already had her MUCH needed procedures if it weren't for the surge in COVID and in this shocking summer RSV. My spunky, perfect 3 year old has oxygen saturations in the 70s if she is resting, and in the FORTIES if she plays. Today, a young girl asked my kids to play and then casually mentioned that her little sister has covid. Can you please understand how disheartening that is?

I am at the end of my rope. The last thing I want to do is offend anyone. I am humbly begging you: if you do not choose to get vaccinated, will you please wear a mask? Will you please stay home when you are sick? If you have asked me how you can help, but see a need to take some political stand against masks, then I urge you to consider your priorities — Spiritual morals should never take a backseat to political preferences. Jesus gave us a really good example of what to do during political unrest: serve and encourage each other in all humility. What we need is compassion; not a revolution.

MRI and Cath Date

Welcome to our roller coaster. If this post is messy, it’s because I am still processing our news, while also parenting, and all the things. I am a mess but I have such peace. My husband is an absolute rock of a man and never waivers. We have an ARMY praying for us. And God is so present, always. I made a blog update last night at 11pm, but forgot to post it. Since then, everything has changed. Below is the original update, and below I will update with the latest since this afternoon. I think this is a good glimpse into how quickly we are always ready for things to change around here:

Update as of August 3rd:

Our biggest news this week is that we have a date set for our MRI and Cath: September 22nd! This was the soonest we could get this scheduled, and I’m relieved with the fact that it gives us a minute to figure things out. The team at TCH worked hard to make this happen. To minimize her procedures, we got the MRI and Cath teams on the same schedule — Sunley will be put under and intubated for the MRI next door to her Cath room. Once the MRI is done, they will open the suite doors and roll her into the cath room where Dr Qureshi (a favorite of ours!) and the team will perform her cath. I have some more questions for her doctors about the cath, but my understanding is that they will be checking her pressures to make sure she is a good candidate for the Fontan procedure, which we fully expect. Dr. Qureshi might also coil off some collateral vessels if Sunley’s heart has developed more of them. I’m actually not sure why we are doing an MRI, so I will ask her cardiologist when we speak next — I’m assuming it’s just so Dr. Heinle and the surgery team can get an extra-accurate picture of her heart before they get in there. I had to set up a dental exam for Sunley here, get a clearance form, and had to get her a prescription for one dose of amoxycillin to take before the dental exam. All of this scheduling was a series of phone calls, leaving messages, etc. I was very thankful that day for helpful and polite scheduling teams!

I have been slowly trying to take on a few more day-to-day tasks that have “fallen by the wayside” over the past month-plus. We’ve started a light homeschooling load and will ease back into that routine, and I’m trying to take on a bit more housework. It’s funny how these things become so burdensome when such a big life change is thrown at me. I’m sure some people can probably keep up with these things better than I can, but I’m giving myself a lot of grace in these areas for now (and being SHOWN a lot of grace by anyone that stops by for a visit!). Everyone has advised me not to worry about these things for now, and I will gladly accept that advice! It truly has allowed me to slow down and focus on only the highest priorities right now. The other night, after planning to cook dinner, I just didn’t have the grit to do so, and I went by the drive-through at Panera. It’s a little pricey for our family of five eaters, but I did it anyway. Of course, when I got to the window, I was informed that the driver in front of me paid for my order because “God is good and He always provides.” Shocker. Thanks for the wink, Lord.

He always provides. Yesterday, I was feeling a bit overwhelmed with all the tasks that absolutely must be done before we leave next month for Houston. I was considering quitting yet another thing I had volunteered to do for the new school that my big two are starting in a couple of weeks. As I was thinking about it, I got a text message from a new friend that read, “Hey, don’t you have some responsibilities coming up with Cimarron? Would it be helpful if I took those over for you?” Pre-heart mom Liz would have said “Thanks, but I can do it!” But God has taught me (SHOVED me into learning) to accept help. What a friend He has sent me. And we have had so many helpful offers and words of encouragement just like her’s. Seriously, the sweet favors and encouraging texts, cards, and phone calls are too many to list. You know who you are, God knows who you are, and we thank you. He always provides.

Last week, another dear friend, Anna Brown, who is on her own journey of mothering rare, sent me a message on Marco Polo specifically to encourage me with this verse from 2 Corinthians 4:

But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, YET NOT CRUSHED; We are perplexed, BUT NOT IN DESPAIR; Persecuted, BUT NOT FORSAKEN; Struck down, BUT NOT DESTROYED — always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body.

For we who live are always delivered to death for Jesus’ sake, that the life of Jesus also may be manifested in our mortal flesh. So then death is working in us, but life in you. …

[We] know that He who raised up the Lord Jesus will also raise us up with Jesus, and will present us with you. For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.

THEREFORE WE DO NOT LOSE HEART.

Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of GLORY.

What purpose our suffering, any level of suffering, can have if we just empty ourselves and let God move. Deep sorrow. Deeper joy.

*****************************

OK, now for the update as of this afternoon:

This morning, I left messages for Dr. Heinle’s surgery coordinators, as well as our cardiologist, Dr. Ayres. Ayres called me this afternoon, and explained a few things:

First of all, the MRI was ordered by the cath team, not cardiology, in order to reduce Sunley’s lifetime exposure to radiation, since we know that she will always have medical things like this in her life. That’s a good thing of course, that TCH is thinking about the big picture for our kiddos and reducing those exposures where they can — but in this case, getting MRI and Cath on the same schedule is the reason it was put off until late September. Sunley’s cardio team doesn’t feel that it would be wise to wait that long for intervention, so we are canceling the MRI and moving the cath date way up. I am waiting on a call back from the Cath team to reschedule this. It could be very soon, so we are very much in limbo. (And I am regretting having dental work and a temporary crown done yesterday, because I’m not sure how I will fit in getting a permanent crown put on, and this temporary one was kind of a disaster and my dentist expects it to fall off and…I digress!) All of the “I guess it’s good we get to wait until September” and all of the bucket list planning, post Fontan vacation planning, Davis’s birthday party…all planning is just gone.

Now for the second part of the update. Sunley’s surgeon suspects that she has some damage caused by the sickness she had back in June when all of this started. He also noted that it’s possible that by doing the cath (in which they might be coiling some collateral vessels) and by giving things a bit more time to heal, Sunley’s numbers may come back up well enough for us to wait for the Fontan until next year.

What a roller coaster. I thought I was going with the flow, but now I’m purely liquid. I have absolutely no control and no illusion of control. I have no idea what to pray for. Of course, we want to wait if we can! What an incredible answered prayer that would be! But seeing how much a minor virus knocked our girl down makes us very nervous for this flu season — not to mention the incredibly high number of RSV cases happening, and of course, as always, COVID. We also can not rent an apartment until we know if we are doing surgery, and can’t really make plans for school, for our homebuild, for our kids, Et-freaking-cetera.

Regardless of what happens, God is moving our story along in ways I did not expect. I have a battle song always playing in my soul, and this news that the Fontan may get put off again certainly feels like God is saying MOVE, MOUNTAIN. Pray with me, please.

The Waiting Game

While we wait for a phone call with cath and surgery dates, we sit in this weird limbo of preparing to prepare. I think one of the hardest parts of being in the medical world is all of the waiting. It is nauseating, like falling from the most beautiful view, but slowly and with nothing to catch you on the way down. I'm glad that Sunley has a team at TCH that truly advocates on her behalf. The hospital is VERY full, but I know they will get her in. The reason for the waiting is that they are trying to get surgery and cath on the same page, and that can be tricky. Sunley is 29 pounds, and 30 is the preferred minimum for the Fontan, so no hold up there. The cath will determine if her heart is a good candidate for the Fontan, which everyone expects to be the case. TCH does not do fontan procedures during flu season, so that's part of the rush in getting it now.

I still can't really believe this is happening. But each day, I have a choice to dwell on the negative aspects of it all, or just suck it up buttercup and make the best of it. The more I let go in prayer, the better I feel.

Today, I went shopping for decorations and play activities for her hospital room. It's a very difficult wave of emotions to describe, picking out all these adorable little girl things while picturing the images we’ll be seeing. It feels so lonely walking around a store with no one there who knows what is happening inside my spirit. I suppose it feels similar for anyone grieving any sort of loss, and I often wonder if strangers around me are suffering too. God has done some really incredible things through my (not so) random interactions with strangers.

One of those interactions happened just a couple months before the pandemic. It was December of 2019, and flu season, so we were pretty quarantined. One Monday mid-day, I decided to take the kids to the mall. I knew it wouldn't be crowded at all, and a change of scenery sounded wonderful. We ate at the food court, and there were only about 2 or 3 other families there. One of those families sat near us, and asked me how I came up with Sunley's name. I told her that her middle name is Summit, which came because of a Bible verse that popped into my head when we received her diagnosis. This mother of two asked me more questions about Sunley's health, and listened so intently. She them told me that she was born in the early 80s with a very rare heart defect, and had a transplant when she was 11. She was now an adult living with that same transplanted heart. This woman started pouring into my soul all kinds of deep and wonderful advice about parenting a young girl with a serious health issue. I won't share all of the details, but her advice was beautiful and personal, and incredibly encouraging.

Someone, I dare you, try and tell me that God did not orchestrate that. Oh, how He loves us.

Tuesday night, after getting the news from Houston, I sat on my porch for just a few minutes while the sun was going down. And just as I expected, God sent me pink clouds, rustling leaves, a beautiful cardinal, and a whole fleet of fireflies. Oh, how He loves us.

So I can walk these aisles of toys giving temporary joy, aisles full of kids who aren't in the hospital, and I can do it with gratitude and joy — because as He cares for these strangers, He also cares for me.

Time for the Fontan

The good news we got today is that Sunley does not need to continue using oxygen; the bad news is that she is not better -- the oxygen simply is not helping. We did not get the news we were hoping for, but of course it could have been worse. We've decided to go ahead and schedule Sunley for her pre-Fontan Cath and her Fontan surgery, and as soon as possible -- like in the next few weeks if we can swing it. In fact, the doctor asked if we brought a packed bag (we did), because she wanted to get us on the Cath schedule NOW. There weren't any openings because the hospital is VERY full, so we came home and they will call us with a date soon. This was not "supposed" to happen this way -- the pre-Fontan decline is usually gradual, and we were expecting to have much more time to prepare. I wish we knew what caused this. The doctors said that her heart looked the same as last time, when we got the news that she was doing so well. I can’t help but wonder if this would have happened without that stupid tiny cold she caught. We’ll never know, and I won't spend much time on the what-if’s. As I said in 2018 when we got her diagnosis — Job never got the why, but he did get an “I AM GOD AND YOU ARE NOT,” and that’s good enough for me.

Right now, her team is trying to get her scheduled the same week that my sister is having her first baby, the big 2 kids are starting in a new part-time school, Davis is turning one, and we are in the very chaotic final stages of our home build here in Oklahoma. I can't imagine a worse time to do this surgery. But, I am aware that I am unaware of the big picture that I have trusted God with all along. Over the last month, as Sunley has continued to struggle, I have just prayed "Your timing, Your timing" over and over again...and I'm still waiting for my feelings to follow my words. Because I definitely don't feel like this is good timing.

To be honest, I am extremely angry, and I have nowhere to put my anger. I'm not angry at God because I know He will carry us. I'm not angry at the doctors, because they didn't cause this. I'm just angry that we're having to do this in such a rush, and I'm angry that things didn't go as we hoped. I'm angry that Sunley's perfect heart is not supported by this very broken world, and I'm so angry that she can't thrive here without SO much medical intervention...even though I'm incredibly, deeply grateful for those medical interventions. Angry, grateful, sad, hopeful, and very very tired.

Part of the reason I'm so upset is because this whole thing has been extremely reminiscent of Sunley's diagnosis process, which you can start reading about here. We had 3 misdiagnoses, and at one point, Dallas Children's told us that she was biventricular, and went on and on about how terrible single ventricle life was -- only to call us two days later with the devastating correct diagnosis. This last March, we were given this amazing news that Sunley would likely be fine for a year, only for her to plummet 3 months later. It all just feels eerily similar. And while I know it will all be ok, I'm just angry over the roller coaster. We made plans. We signed up the kids for an awesome new part time school, and for soccer, and ordered more chickens (can you ever have enough chikens?). I started planning my last first birthday party for Davis and pictured what this year could be after such a rough 2020.

We must be doing really good work for the Lord if Satan is trying this hard to knock us down. Jesus come soon.

I'm not angry with God, but I'm so disappointed and frustrated with my own lack of understanding. I thought maybe He would do something big and we wouldn't need surgery yet, and I'm just so sad that we didn't get an answer like that. I have peace because I know He cares for me and hurts with me, but I'm so so sad.

I never complain about comments made to us, because I never want people to feel like they might say the wrong thing. But, please, do not say "At least this surgery will be over with and behind you." If one more person says that to me, I might just lose it. Doing this surgery at 4 years old would have been much, much easier on all of us -- at least according to my limited understanding of the picture in front of me. It is what it is, and I won't mope around about it, but I certainly preferred a different plan. And I doubt this will ever feel "behind me." Sunley’s care is palliative, and I don’t want it sugarcoated. This surgery creates a cardiac anatomy that can be very hard on the body, but it’s our only option.

Somehow, we have to make plans to be in Houston very very soon, and take all of our kids - we desperately want to stay together this time. We have to figure out who is coming to help with the three healthy kiddos (praise God, we have lots of offers!), find where to stay, etc. I can't make those plans until we have an official date, and even then, our date may get pushed. TCH is FULL of patients, and canceling procedures left and right. It's possible that we could rent a place, take our whole family there, and then the surgery could get postponed 3 times. A full hospital also means a lot of "pushing for discharge," which can be extremely annoying and nerve-wracking.

Now for my prayer request. There is a very small possibility that Sunley's heart has developed some collateral vessels that are contributing to her low numbers. They will likely coil those off during her pre-Fontan Cath. Doing that MIGHT make her numbers higher. IF her numbers get higher after her Cath, and IF it seems like waiting for the fontan would be beneficial, then that is something that could happen. I don't know if that's really what we want to happen, but please pray that whatever happens in that Cath will be what's best for Sunley long-term. There are so many possible outcomes, and everything is a series of delicate judgement calls. We need God to guide us and her doctors in these decisions.

Please also pray for our family to enjoy these next couple weeks before surgery. We are going to try and come up with a “mini bucket list” for our family and just soak in all the joy we can until our next chapter. I’m predicting lots of snuggles, and way less cleaning.

I’ll let everyone know when we have a date!