Post-op Day Three

We had another hard day today, but Sunley is still doing really well — we have had no real medical “hiccups.” The biggest challenge for us right now is her pain management — seeing Sunley be completely silent (except of course when she’s REALLY hurting) has been so hard. She is just emotionally totally shut down, and I don’t blame her! I have to remind myself constantly that it has only been 3 days since open heart surgery, and the kid still has two of her chest tubes hanging out of her, so of course she isn’t energetic yet! 

We’ve started a 770cc/24 hr fluid restriction, which is typical for Fontan recovery. There was some miscommunication getting there, some on my part and some not, but it was all resolved today, and I was happy to see that we didn’t even get to 770 today. I think we ended at around 700 cc for the day, so Sunley is getting everything she wants, which helps her parents! The rest of her recovery will likely be centered around finding the balance of diuretics and fluid intake, and all of that hinges on her chest tube’s output. Once we get those chest tubes out, we’ve been told recovery usually speeds up big time. We are also hoping that after we remove them, breathing will be less painful, and her saturations will go up.

Last night, Sunley woke up around 4 am in a lot of pain, and due to that pain, she was desatting into the high 80s. This lasted for a few hours, so we did end up bumping her oxygen back up to 1 L. This afternoon, we took it down to .5, but now it’s back up to 1. Her RT came by tonight right before bedtime and said that her breathing does sound a little diminished, and her cough sounds a little worse, X-ray is just a tad hazy, but still no one is super concerned. Walking is the best medicine right now, and we hope that any little issues will be resolved by moving. This isn’t good news to Sunley, but it’s the only way home.

The walks are definitely the hardest thing right now for her. All the pokes, yucky medicine, etc is bad, but Sunley absolutely hates it when we tell her it’s time to get up. She was in so much pain today, but we really had to do a walk, so we waited until 11am because there was a “puppy party” with Bailey the therapy dog in the family room on this floor. At 11, we had Sunley sit up in bed, and it took her about 10 minutes to stand up. I was in the process of ordering Sunley’s lunch, so Derek and our PT worked on moving cords around, getting the pole set up, and getting Sunley ready to move while I was on the phone. I was on hold for about 15 minutes, and during that time, Sunley started desatting (again, just from pain), of course screaming, and then she suddenly cough/puked all over Derek and the PT. I’m sure you can imagine the chaos. I finally just hung up, we got the mess cleaned up, and Sunley fell asleep immediately, just leaning on Derek. After all of that, we realized it was 11:45 (at this point we had been trying to walk for 45 minutes), and so we got the wagon for Sunley to ride to the puppy party. When we got there, Bailey (who was wearing a yellow bow specifically for Sunley) gave Sunley some sweet snuggles and did a couple tricks for her. Sunley was totally shut down, but we invited Bailey to Sunley’s birthday party on Monday, and Adair, the trainer, mentioned that Bailey could wear a unicorn costume. Sunley immediately said, “Oh I love unicorns!” And I almost cried — it was so sweet to hear her happy voice again! That was one of only 2 happy sentences today, but she’s still in there, and I’m sure Sunley will be back to her feisty self soon.

We have had good nurses for this entire admission, and it has made such a big difference for us! They have really had Sunley’s back and put her first, and it is just really wonderful from a parent’s point of view. Sunley has such a big team here, and even the people who aren’t technically part of her squad on paper…they’re still on her team. The visits we’ve had from her past doctors here every day have absolutely filled our spirits, and those visits give us both the boost we need to keep looking ahead.

Day one I will sit in darkness

Until the light of your grace shines through

I will wonder where the light comes from

Until I forever shine with you

Day two I will gaze

At the openness above me

Waiting for it to fold open

Waiting for it to pull me home

Day three, amazed at what my eyes have seen

The beauty of all mysteries

Life about me, gardens abundant

Day four my God what have you done

The swirling lights are beckoning me

To come

Day five I will fly in the skies you have made

I will swim to you until my body gives out

Day six, oh day six

There is breath within me that I can’t explain

I will stay here until you call my name

I won’t rest until the days are up

Until the seventh day

I will work for you

Until the seventh day

I won’t find rest

Goodbye CICU

I didn’t update yesterday because we were all just way too exhausted to do anything but sleep by the end of the day, so I have a lot of news to report! But before I do, we have a major answered prayer that I wasn’t expecting: Siblings can visit again!! So today Hadelyn and Ruger were able to see Sunley. It was much needed, and I’m hoping it helped everyone.

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Yesterday was our first full day post-op. Even though Sunley was alert and taking on Monday after surgery, Tuesday she really seemed to totally shut down, and even throughout today we couldn’t get any words out of here — sometimes not even a nod to a yes or no question. It’s been really hard to see her like that. The only time she really spoke much Tuesday or most of today was when we made her get up or when the nurse stripped (emptied) her chest tubes, and of course then it was screaming and not really talking. Lots of begging to stop and go home and “No I’m not doing it!” or “I think I should have never come here!” There are no words for how absolutely devastating it is to see your spunky 3 year old like that.

Sunley got one of her three chest tubes out today, as well as her central line (the one in her neck). They were both very painful and required being held down, but the central line was especially bad. It was taped all over her hair, and was attached by a few very, very tight stitches, which made it super difficult for the nurse to detach. She did great though and was so sweet and patient with Sunley. 

All of those moments will be etched into me forever, but I pray that’s not the case for Sunley. 

We have had really good nurses in the ICU, and our nurse Abby actually got Sunley to have a short conversation with her this afternoon. It was absolutely beautiful to see Sunley come out again a little bit. Although we had great nursing care, I was a bit frustrated with a lack of communication with and between some of the other team members on the unit, so I’m really happy that just a couple hours ago, we got to move to the step floor! They are currently having a miscommunication about Sunley’s fluid restriction, and I’m pretty much done with the miscommunications, so I told our new nurse that if anyone wants to limit her fluid, they need to come talk to me in person and get it straightened out. 

Fluid restriction is common with Fontan recovery, and we did have some on day one, but it has been lifted since then. Sunley’s Fontan pressures number (I think it was the CVP) was consistently super low, so the team decided to lift all fluid restrictions for a while. I’m sure we will still end up on restriction, but for now the priority is keeping her hydrated and beginning to fill that belly with food! 

Back to yesterday, Sunley was able to get up and walk around half the unit! I mean, we definitely forced her, and she screamed the whole time, but she did it. And it has definitely helped getting fluid off. Today she walked again, and then sat on the couch with me for about 45 minutes. It was really, really hard and I hate that she has to do it, but I’m very proud of her.

I realized as we were leaving the CICU today that if things go well, that may have been her last admission there. And I have been super emotional about it ever since. We have been inpatient at TCH 6 or 7 times, and have had about 12 rooms here. I don’t think I can really explain all of the conflicting emotions of that, and I think if this wasn’t a lifelong condition I might feel differently. I feel super guilty for having any feelings of sadness leaving the CICU, because I am obviously super happy that Sunley is doing well, but there are huge chunks of me in this building and on that floor — pieces that I can feel only when I’m here. And so many weighty memories, good and bad. The person I was before I was a heart mom died a long time ago — it feels like an old parallel universe, and I can’t even imagine being her again. TCH is the symbol of that process for me. So leaving the unit and so many people that have been such a huge part of our journey, knowing we may not ever be back — it’s just hard, even though it’s objectively and obviously a very good thing for Sunley and for all of us.

We have had SO many visits from familiar faces, and again I am floored at the amount of people who remember Sunley — even people who only had one or two days with her. Those visits to our room have been better than any therapy I could ever have. There are spaces in my heart (probably in my full-grown right ventricle) saved especially for those souls. We can’t see the angels that fight for us behind the veil, but the people who have chosen to fight this journey with us are the closest thing to angels I will see this side of heaven. 

Besides the team here, we have so many joining the fight in different ways — people sending us gift cards, grandparents caring for our big kids during the day, bikers (you all know about them!), and so many encouraging messages. I am really missing our “posse” of heart parents from 2018, before private rooms in the new tower, before COVID restrictions, etc. but this is a totally different chapter with a toddler, so it’s not really comparable. And again, those visits from our old teams make all the loneliness of hospital life so much less!

We’ve seen lots of yellow Sunley t-shirts around the hospital this week, which is just a bright and happy thing to see. They will be on sale until May 31st through Write With Light Project, and they benefit the Fontan Go Clinic here at TCH, so if you are looking for a way to help, this is it!

I know all of the photos of Sunley show her looking really sad…well, because she is. We have seen one smile since surgery. But I really feel like we’ll be turning a corner soon and seeing more and more glimpses of the real Sunley!

Just a Mother

Tonight’s post will be short and sweet, because caring for a 3 year old Fontan patient is intense. We started our very early morning at 4:45, and it has been pretty much nonstop. 

When we loaded Sunley in the car, we turned on the radio and “Speak to the Mountain” was playing followed by “Wait on You.” I could not have chosen two more fitting songs to prepare our hearts for this day. On the way, I thought about how surreal it was that somewhere her team of doctors were driving in for another day of work. For them, every day is their patients’ most important day. We arrived at the hospital around 6, and ran into Sunley’s surgeon, Dr Jeff Heinle (or J-Dawg as we call him) on the elevator. I gave him the best pep talk I could think of, and I’m sure it helped ;)

Handing her off to her team is always just really, really terrible. But we loved her anesthesiologist, Dr. Mossad, and his team — they made us feel very informed and very comfortable with the whole thing. During her surgery, someone put her bow and her hospital bracelet on her Minnie doll, which we discovered afterwards. What a sweet little thing to do that brought us some smiles. Don’t ever underestimate little personalized touches like this!

Surgery was from 7:20am until about 2pm, which was Sunley’s fasted surgery so far!

Dr Heinle did a non-fenestrated Fontan, and it went very smoothly. Sunley was on bypass for 53 minutes, and her team described the surgery as “uneventful,” which is exactly what we wanted.

I can’t even begin to tell you the comfort we felt scrolling through social media and just seeing a sea of yellow t-shirts. It was truly overwhelming, and more comforting than I can ever describe. I knew we would be well supported the day we got her diagnosis four years ago, but to see it physically like this is just unbelievable. When it’s not t-shirts, it’s bikers, or gift cards, prayer services at churches we’ve never visited, a sweet text, a hello from a familiar nurse, a prayer said behind closed doors — every little act brings us peace and hope through the Father.

Sunley was extubated right after surgery, and as of 8 pm tonight, she is already down to 2L of oxygen on the nasal cannula. Amazing. She is in quite a bit of pain when she wakes up, and every time she wakes up, she tries to get out of bed. We’re keeping her pretty still for tonight, but her doctors hope to have her walking in the morning. We know that will be really rough, and as much as my inner momma bear wants to tell everyone to leave her alone and let her sleep, I know that getting up and around quickly will be best for her recovery.

The kids facetimed with me tonight, and even though she was half asleep, when Sunley heard her brother’s voice, she yelled out, “Ruger!” It was the sweetest thing, so they got to talk for just a little bit until Sunley started hurting again.

We are so impressed with the staff here, as always. It’s amazing to me how many people remember Sunley, considering how many patients they have over the years! It really speaks to their compassion and their dedication to do good work here. Sunley is very loved, and that makes her parents feel very loved.

I have already started decorating her room, although we hope to move out of ICU in just a couple days. Having a sweet, happy space is the only way I know how to help Sunley, so decorating is usually one of the top priorities. I wrote this sometime last year, feeling all of the frustration of not being able to do more for our little one:

I wish I was an artist

So my feelings I could paint

When I watch my children suffer

And all I can do is wait

I wish I was a doctor

So I could understand the words

They use to justify the wounds, the pain, and all the hurts

I wish I was a funny clown

I'd always make you smile

Even in the hardest journeys

With never-ending miles

I wish I was a dragon

With a cunning mouth of fire

I'd fly you far away from here

To wherever your heart desired

I wish I was a scientist

Who fixed all the broken things

You never would have worn the scars

Or had a single scary dream

I wish I was the tallest tree

Up which you'd come to hide

We'd spend the day with yellow birds

And never go inside

I wish I was an angel

I'd whisper sillies in your ear

I'd guide the hands of surgeons

And show your eyes that God is near

But here I sit, just your mother

Wishing there was more that I could do

I'll say it more than you can stand

A thousand I love you's

Just your artist mother

Hang some decorations

Just your doctor mother

Gather information

Just your funny mother

Sing some silly songs

Just your dragon mother

Tell the doctors when they're wrong

Just your science mother

Fundraise to find a cure

Just your tree branch mother

Make you feel secure

Just your angel mother

That's the easiest to be

Cause when all is lost and stripped away

God is just so clear to me

{ Time to move mountains, sweet girl }

Surgery Tomorrow

Surgery tomorrow is scheduled for 7:15 am, and we should get updates each hour. I plan to text my immediate family in a group text, and then I will copy and paste that text to Facebook and Instagram (IG is @lemonadelanding). I hope to keep the blog updated as well with progress, but sometimes things get really busy at the hospital, so I’ll just do it when I can find the time! 

For anyone wearing Sunley shirts tomorrow, please post a photo using the #sunleysummit so I will see it!

Remember to order T-shirts, listen to the playlist, and think about signing up for a lemonade stand! Once things calm down around here, we’ll get to start moving on getting those stands organized — we have about 25 going up as of right now.

We have certainly had more hospital time than we planned on having the week before surgery, but we’ve still managed to make some wonderful memories. The morning after we arrived, Sunley had an appointment at TCH for a holter monitor placement. She absolutely hates having stickers on her chest, and unfortunately they gave her stickers plus some really strong industrial level tape on top of the stickers to make sure they stayed on. 

Taking them off was absolutely terrible, and there were lots of tears and “Why did you do that to me?!”. And then, a few hours after we dropped off the monitor, we got a call that for some reason the data didn’t record, so we had to do it all over again. This time, I went by Walgreens beforehand and got an Ace bandage to wrap around the stickers instead of taping it on. The nurse told me it would work way better than the tape anyway, and to that I ask, “THEN WHY ARE YOU USING TAPE TO BEGIN WITH?”

Anyway, this time the monitor worked and taking off the stickers was way less dramatic. Since then, Sunley has asked me several times to bring the wrap to the hospital — but of course I can’t wrap it over her incision. At least I know it was a win!

Moving her surgery up a day caused more chaos than I thought it would — we had to rush to get her prescription for her nose gel, had to start the pre-surgery body wipes immediately, and Derek’s parents had to reschedule their flight to come out earlier so that Derek could go to the pre-op day with Sunley and me. Instead of having a week-long slow paced vacation, we had at least one errand or appointment a day to the hospital, until today (Sunday). It’s been extremely hectic, but we’ve still made some wonderful family memories.

Pre-op day was long, but we knew it would be. More pokes and swabs and tears, but also the best nurses and doctors around. Sunley enjoyed her visit overall, and got lots of attention, toys, and treats. Derek and I saw (and hugged) some familiar faces, which is more comforting than they can possibly know. Child life came by, and Sunley got to pick out a scent for her mask that she’ll have when it’s time to fall asleep. The Child Life Specialist showed Sunley lots of pictures of what to expect, and Sunley kept saying, “Oh yeah, I’ve done that and I am NOT doing that again!” It was funny and a little sad — We’ll see how things go with this girl!

Tonight, I’m packing up for just a few days, and I hope to come home to the apartment soon and visit the kids, and switch out clothes, toys, etc. There are a few things I forgot like slippers, travel shampoo, etc. but nothing major — I’ve prepared as much as I can, and now it’s time to do the thing. I think I would feel more ready if this surgery was actually fixing her heart, but we’ve known the whole time that these surgeries are palliative, and that’s a hard thing to confront.

I’m not sure what to expect, except to see God do amazing things. Tonight I took a lot of photos of Sunley’s blue lips and her current scar, because I know those things may change after tomorrow. And as much as I know it’s a good thing, I feel like I will miss it — the scar as it is, and the blue lips. I’m so grateful that these surgeries exist now, but I hate that she has to do them at all. 

There’s not a lot of time or space for reflection right now as I pack and make sure everything is ready for the morning — but I know that tomorrow while we wait, God will bring us inexplicable peace. He always, always does.

I hope to do a blog post soon explaining exactly what this surgery is, and what we hope it will do for Sunley in the future. But for now, these quick updates are all I can do with my current bandwidth. Thank you all for continued prayers.

Bucket Lists and Bikers

The T-shirt drive concluded at $12,905 in total sales and donations for Write With Light Project, and I am BLOWN AWAY. We’ve shipped out most of the shirts, and the rest will be shipped this Thursday. For everyone who participated there is no THANK YOU big enough. You have lifted my spirits so much. I have enjoyed packing the orders, and getting to see every individual name on the orders. It’s brought so many smiles to my face that wouldn’t have been there otherwise. Plan on wearing your yellow Sunley shirt on surgery day, April 19th! We’re still accepting donations and sign ups for lemonade stands, so feel free to do that if you missed the T-shirt drive.

The countdown has dwindled to days now until we leave for Houston (April 12th). Fontan time feels incredibly surreal and very overwhelming, despite the fact that we had lots of heads up that it was coming. I’ve tried to fit in as many sunshiny bucket list things as possible. I would have liked to have longer bucket lists for the kids before we left, but I could only pull off so much with everything going on. We had a really wonderful visit with my sister and her family from Nevada last week, and all of my kids were so happy to see their cousins. I’m so glad we could pull off that trip so close to surgery. Everything now is hectic and wonderful at the same time.

We still have boxes in the new house, and of course the instability of moving is nothing new to us — this is our 8th move in 10 years of marriage (we had five different addresses the year Sunley was born).  But even though we are used to it, moving during such a heavy time is pretty unsettling (don’t get me wrong — we are RELIEVED to finally be in this house!). 

I feel myself reclusing away from everything a bit and bracing myself for the next chapters of Sunley's fight with Hypoplastic Right Heart Syndrome. I can't help but become a little withdrawn when we have big medical things going on. I find it really hard to have any sort of conversations, and I really struggle to remember day-to-day stuff. So if I seem extra socially-awkward when you see me, it’s not you — It’s the Fontan. I’ve been zoning out a lot more, and realizing that for several minutes I haven’t moved because I’m just picturing everything — the sounds, the tubes, the layout of the hallways in the hospital — I know at least part of what’s coming, and while I’m so grateful that we have this care as an option, I’m really dreading putting Sunley through all of it.

As much as I don’t want to do this, I know that the strength will show up when I need it — That’s just being a mom, medically complex or not. And in the meantime, our family is covered in support. I have daily offers of help in so many different forms, not to mention the thousands of prayers going up on our behalf — answered with a sense of peace mixed into the dread. It’s so much easier to feel close to God in times like this, hence the whole “joy in suffering” thing. And that’s the part that I’m really trying to absorb.

You might remember Sunley’s third birthday motorcycle drive-by (click here for the photos). Quite a few bikers found out about her love for motorcycles, and came through in a big way for her. They even gifted her with her own toddler motorcycle, and gave her an official road name patch for her leather jacket (Firecracker). Well, a few of those bikers have been working behind the scenes, and have organized a biker escort for us with various biker groups, all the way from Edmond to Houston on April 12th! We’ll be leaving Edmond at 10am that day followed by quite the entourage. (Pray for good weather, because rain could cancel the plans)

I am just completely beyond humbled that total strangers would do this for us, but not at all surprised because for the last 4 years God has sent us moments like this over and over again. I’ve posted our route below, including the stops we plan to make to pick up/switch out biker groups, and I know there’s a few people planning to find a pedestrian bridge on I-35 to watch us go by. If you happen to see it in person, please take a pic or video with #sunleysummit so I can see it!

Things like this just bring so much light into gloomy situations. A long trek to Texas for surgery is now a celebration, and a reason to decorate our minivan, thanks to the thoughtfulness of strangers. I am tempted to list all of the people who have been coming through for us, but there are truly too many to list! I am in awe of how God uses His people to show us His tangible love for us. This is one of those situations where it’s hard to feel like you’re really helping, but trust me — even just a prayer for us is felt in big ways. A sweet note is kept forever. A meal is treasured with a sigh of relief that I don’t have to cook or clean up that day. A hug brings down the walls that I’m desperately trying to keep up in public. Every little thing counts, and God knows them all. 

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.

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.