Day Ten

Day 10 in the hospital, 9 days post-op!

Another good day, with discharge on the horizon! Sunley woke up feeling terrible. She was super lethargic and pale, and had some tummy issues that were causing her a lot of pain. She is woken up each morning when it’s time for a finger prick, so that’s a rough way to start your days anyway. We had planned to do PT at 9 with Candace, and she was not having it today. She rode the bike a little bit, but didn’t want to participate in any games or play with any toys. Poor Candace has only gotten to work with Sunley on her bad days! Hannah and Denzel got the good days. We brought her back to her room, and she fell right to sleep for about 3 and a half hours. After that, though, she seemed to be much better, so I don’t know what it was, but it was relatively short-lived.

The biggest news of the day is that Sunley is NOODLE FREE! Surprising to everyone, her chest tube output dropped significantly, enough to go ahead and pull the tube. It was terrible, but it’s over now. The only thing Sunley has on her now is her pulse ox probe and her IV. Her chest Xray showed a little improvement on the tiny pneumothorax that they saw, so no real concerns there. 

After she started feeling better, we went on several walks, including exploring the skybridges, and played in the Child Life playroom for a bit. Our next door neighbor went home today, and we expect (loosely expect) to be closely behind. I guess we’ll just be watching her numbers over the next couple of days to make sure we go home on a balanced amount of diuretics. They will be weaned outpatient by her usual cardiologist.

Unfortunately, taking oral meds has become just a really difficult task. Sunley had to go back on potassium today, the worst oral med known to heart toddlers, and immediately threw up SO much when she took it. She has thrown up every single time she’s had potassium. So now, we are giving the tiniest bit every 20 minutes until the whole dose is up. And even that is such a fight.

This entire Fontan recovery has been so incredibly draining, and I doubt that being home will actually be easier at first. But we are so grateful that everything has progressed without any major complications. Sunley is ready to go home and be with her siblings. I’m ready to go literally anywhere for 24 hours by myself and sleep, but that won’t be happening for a while. Seriously though, I am looking forward to all four of my babies being in the same place again. Davis, the youngest, is especially having a hard time being away from her Mommy and Daddy. I recorded a looping video of me singing some of her favorite lullabies that G (my mom) plays for her at night to get her to go to sleep.

Derek and I have been switching off going home each night to tuck in the kids before coming back to the hospital to sleep. It’s been really great for the big 2 kids, but for Davis, I actually think it’s made it harder. She will NOT go to sleep when we put her down, and she’s been sleeping in a big bed with her sister or grandmother every night that we’ve been gone. Not sure how that’s going to play out when we get home.

Sunley’s saturations have been around 94 to 95 today, but she is still dipping towards the end of the really long walks. It will definitely take me a little while to get used to her new numbers, and to understand what’s ok for her and what’s not. It’s always overwhelming at first, but we’ll find our new groove eventually.

After her noodle removal, Sunley was finally able to give me a good, wrap-around, normal hug! It was so very sweet, but I also felt for the first time how skinny she has gotten. She definitely looks thin, but to feel the “lack of squish” was so sad. We added pediasure yesterday, so hopefully I’ll get back some of that baby softness.

This recovery reminds me a lot of her recovery after her first surgery, the PA Band (although that one was much longer, if things this time go as planned). The whole recovery was about finding the balance of diuretics, and Sunley lost so much weight, most of her hair, and just looked rough. Although, I didn’t really realize how rough she looked until months later, looking back at pictures. This admission is much worse, even if it’s shorter, because TODDLER, and because she has, ya know, real life outside the hospital to which she can compare!

Hoping for another good update tomorrow!

Sunley's First Day As a Four Year Old

Today was a great day, overall. We played in the playroom with child life, and went on multiple walks. Sunley’s demeanor is improving in just tiny bits each day. She loves doing PT, and the PT and Child Life staff is seriously fantastic. We absolutely love her team on this floor — they are so friendly, and explain everything thoroughly, and always ask us what we think and if we have questions. 

We are trying to convince Sunley to take off some of the stickers and bandaids she no longer needs, but she has so much fear about that, so we are letting her decide that. I soaked her feet in some warm water and was trying to massage her bandaid off from where her ankle IV was, but she didn’t fall for it and that’s ok for now.

I forgot to ask what Sunley’s BUN was today, but I know they are still cautious to give her too much lasix/diuril, so I don’t think it’s improved. However, her right chest tube output only SLIGHTLY decreased this morning, and they were really hoping for a bigger jump. So they decided to try just one day of upping her lasix, and revisiting the issue tomorrow morning.

We pulled the left chest tube (Sunley calls it her noodle) today, so we are down to only one now (she had three after surgery)! Pulling the “noodle” was pretty traumatic, but I’m so glad that we made that decision. I forgot how LONG they are. I could not believe how much tube was in there, looped around. No wonder it was hurting her so much!

Obviously, it is not funny at all when your child is in pain, but her phrase of choice while she was crying was, “Not the noodle! Not the noodle!” and I felt super guilty for holding back a smile under my mask. She’s just so cute, even when she’s mad. Don’t get me wrong — it was still terrible to see her in pain. But at least it was absolutely the means to an end, and that tube was her only source of pain the last few days.

Her saturations have been noticeably higher since we pulled the noodle, and I’m starting to let myself believe that for the first time ever, she is actually going to reach her saturation goals after surgery.

In PT today, she was finally talking to the therapists. They set up an obstacle course for her with some stairs, and asked her if she wanted the easy version or the hard version. She immediately replied, “Well, I’m four now, so we should do the hard one.” By the end of the session, her legs were pretty wobbly and tired, and she said, “OK, I’m outta here!” She rode a bigger bike today, and all the way back to our room, she was talking Hannah’s (therapist) ear off. “You can come to our house and sleep in my mom’s room. And we can have a slumber party and have popcorn and watch movies! You can totally come.” She is also going on and on about having Pho when we get out. She’s on a fluid restriction, so we’ll have to be careful and measure it out, but we are definitely going to make that happen!

Other than Hannah and sometimes Denzel, and her playroom friend Kaylee (the physical therapists and child life specialist) she really hasn’t spoken to the staff here. You can see her guard go up with anyone in scrubs. I’m so happy for her progress, but even what we have right now is such a muted version of the usual Sunley, and I’m so anxious to get her back completely. 

As I’m typing this, Sunley starting singing “Grow Flower,” a lullaby I made up for the kids. And I’m realizing this is the first time she has sung since surgery. What a special moment.

We have started forming bonds with other patients on our floor, and Sunley gave them two of her birthday balloons. They are beautiful little girls, and one of them just had her Fontan as well. It’s amazing to come here, and suddenly having a single ventricle heart isn’t uncommon at all. I had coffee with a beautiful new heart mom from Colombia, and it was so wonderful. It’s hard to explain how revitalizing time like that can be for my soul. We also got another visit from one of our favorites, Dr. Schlingmann, who always makes Sunley a priority when we are here. He even brought her a birthday present. Sunley is still pretty grumpy around doctors, but deep down she loves him as much as we do!

God is present everywhere, I know, but it is just so easy to feel with Him here. I always crave that focus and stillness found in the chaos of hospital walls. It really is impossible to actually explain.

PS- We just checked her noodle output, and it’s too early to really call it, but it looks considerably lower! Maybe just a day or two left with that. 

Post-op Day Seven

Day 6 post op, April 24th:

This was Sunley’s last day as a 3 year old! She had a good day. We stopped potassium (thank GOODNESS), and CAME OFF OF OXYGEN! Her saturations are still in the low 89-91 range, but everyone is very confident that once we take out the chest tubes, those saturations will come up quite a bit.

Her right chest tube is still putting out quite a bit, but it decreased again today. We expect a big dip tomorrow because of her diuretics regimen she is on. We are leaving the left chest tube in for now, even though it’s done, so that hopefully we can pull both. Who knows, maybe even by Tuesday? Sunley went on 3 walks today, including a tricycle ride, and all of that should be good for getting rid of those chest tubes! She’s barely starting to talk to just a couple select nurses, but is much less reserved with Derek and me than she was just a few days ago. 

We have planned a birthday party for her at the hospital tomorrow with siblings and two grandparents, so that should be fun! I also got to meet another heart mom for coffee today. Her son was just discharged from a few doors down after his Fontan, and it sounds like they are having very similar recoveries. He had surgery a week before Sunley.

Day 7 post op, April 25th:

Sunley had a great birthday. She got SO many gifts and visits, and I know she felt so special! She even got exactly the birthday cake she wanted, thanks to Madilyn Crouch, who lives nearby. She had balloons, streamers, and all the typical birthday things.

Our birthday party was certainly different than we planned, despite getting permission beforehand. There has understandably been a lot of miscommunication about visitor restrictions, since it’s constantly changing. When my parents and the kids arrived, even though we had cleared everything days prior, and over and over again leading up to today, the charge nurses wouldn’t let them in. I came out to the lobby to see why, and they told me that we could only have one person in at a time, and that the others would have to wait their turn, and couldn’t even stay in the lobby on our floor.

I felt like my reply was appropriately firm but still respectful:

“We cleared this beforehand so exactly this situation wouldn’t happen. And we will absolutely follow whatever rules y’all have in place. But just to be clear, if this is because of germ precaution, instead of everyone coming into one room and keeping everything contained, you would like us to go to the busiest floor to wait our turn, and use the elevator multiple times, which would put the germs everywhere and expose more people?”

They stared at me and said absolutely nothing. And for the first time in 4 years of multiple stressful days in the hospital, I finally cried in front of the staff. I apologized for crying, and told them I know they are trying to do the right thing, but I also said, “You HAVE to get everyone on the same page. Because they were fine to visit in ICU and literally no one knows what to expect day to day. Our kids want to be together, and we have no problem with the rules, but you have to tell us beforehand and stop just throwing it at us.”

I went into the lobby to break the news, and Ruger started crying, which made me angrier. Everyone else went to floor 3, the busiest floor, and I took Ruger into the room for birthday party #1. A few minutes later, the nurses came in and told me they decided Hadelyn could come in the same time as Ruger, but the adults would have to switch out. Fine, that’s what we did.

We had multiple shuffling, and trips to the elevator, and during one of those switches, the nurse came in while only my mom was with Sunley and stripped Sunley’s chest tubes. So I walked in as Sunley was crying and my mom was comforting her — not ok. It was done, so I didn’t say anything. We had a great day. Sunley felt very special and had a great birthday. And I LOVE TCH. But sometimes, yall. Sometimes.

We had visitors make a paper snowflake and sign it, and we hung them on the wall. Those are keepsakes for sure! We also have had nurses and doctors sign one of her hospital gowns, so we’re definitely keeping these things forever.

At rounds this morning, the team wasn’t really happy with her output in her right chest tube. It just hasn’t decreased as much as they’d like it to. Her BUN was up also, and so we can’t add diuretics right now. They’re hoping that the elevated BUN is from all of the Toradol we used, so that is gone now (and she seems to be doing ok pain-wise without it). We will pull the left chest tube tomorrow (Sunley calls them her noodles, and she does NOT want anyone pulling them) and revisit the diuretics plan to get her tubes to drain more. There was talk about going on a very strict no-fat (or was it low-fat) diet, but we aren’t there yet. 

When we told Sunley about the chest tube tomorrow, she seemed really sad. After a couple hours she said, “Mom, I don’t want them to pull out my heart!” Poor girl! No wonder she is so scared!

Sunley did fantastic with PT today, and was even a bit talkative with the (female) therapists. She is hoping to visit the playroom in the morning with the Child Life team. Sunley wore her biker jacket and new sunglasses on her ride today, and told the PT that she is faster than her brother, Ruger. 

She is doing really well. The older kids are being cared for, even though we deeply miss them. We visit them most nights to tuck them in (we switch off who goes home), and then come back to sleep at the hospital. We are INCREDIBLY blessed to have enough support that Derek and I can do this, together.

I met two other heart moms today, and I really can’t express how important those relationships are to me. I need those women in my life. One mom I met tonight is the mother of the sweet one who moved our surgery date. You could literally see the strength in her eyes, and I already feel so blessed to have met her. Heart moms are some of the fiercest people I know, and I feel stronger every time I am with them.

We also met a couple other patients on the floor, and we are all buddies now! One other little girl just had her Fontan on the 20th. They are from overseas, and came to TCH specifically for this surgery. I love that Sunley will know other kids with similar hearts (although we have yet to meet one with Sunley’s specific anatomy!).

This time of year brings back so many memories of my pregnancy with her, and our introduction to heart parent life. The photos below are of the Houston sunset, exactly four years apart on her birthday. Regardless of everything, there is evening and there is morning.

Happy birthday, Sunley Summit. I would choose you and your spunky biker heart over and over and over again.

Summits and Valleys

Yesterday was a summit, and today was a valley. And that’s ok; That’s typical Fontan recovery. Sunley woke up just not feeling herself, and has barely eaten all day. We were planning to do 2 or 3 walks today, but our morning one was put off while she took a huge nap. We scheduled PT to come by at 12:30, since Sunley was scheduled to have her IV Toradol at noon. Unfortunately, noon meds came and after about 3 minutes of administering it, we noticed Sunley’s hand was sitting in a puddle of Toradol — Her IV had gone bad. After surgery, Sunley came out with four IV’s - two in her hands, one in her leg, and the central line in her neck. But since then, we’ve gotten down to just the one, so we had to take it out and call the VAT team to come replace it. At lunchtime. On a Saturday. Sunley had to wait for three and a half hours to get her Toradol. She wasn’t in too much pain at first (we think a little bit of Toradol must have made its way on board), but after a while it started to show. We gave her some extra Tylenol, but finally at about 3pm, she started screaming out of the blue, “My heart! My heart!” and grabbing her chest, so it was time to get some oxycodone. She hated taking it so much that she tried to convince us that her heart wasn’t hurting, but we finally got her to take it. We were still going to try and go for a tricycle ride, but as soon as PT came, VAT finally showed up so we couldn’t go. PT had already stayed late for Sunley, but when she saw Sunley, she suggested we just let her rest if we felt like that was best, and we did. We asked to keep the tricycle for later, but liability. And I get it. Today was just not our day.

VAT was super apologetic, and did a really good job getting her IV in on the first try — not easy when the kids is on diuretics and barely eating. Since we had just given oxy, we’ll just go back to our regularly scheduled Toradol. Sunley fell right to sleep with some Momma snuggles after getting the IV, and we’re calling it a day. When she wakes up, I plan to try to convince her to blow bubbles and play with some toys, but I’ll be honest — If the girl asks for a movie, Imma say yes today. And I might watch one, too.

On top of all of that, Sunley’s right chest tube actually increased its output. Although, I don’t think that’s necessarily a step back; It could just mean that the diuretics we added yesterday are working. And on that note, we were supposed to start chlorothiazide (Diuril) yesterday, but had a clerical error, so that’s now on board today. So even if output increases again, I won’t worry too much. 

We are trying to wait and pull both chest tubes at the same time to save at least one instance of trauma, but the left one is pretty obviously done, and it is the one causing her so much pain. I’m gonna let surgery lead the way on that decision, but I won’t be surprised if we have to pull them separately after all. 

It is really heartbreaking to hear Sunley try to reason with us about her meds and pokes. She definitely doesn’t understand why this has to keep happening, but I’m just continuing to tell her the same things, and being really consistent with what we’re doing as far as rewards and lots of extra snuggles. Derek and I are both emotionally drained, but we also find a lot of purpose in days like this. It’s hard to explain, but even the bad days aren’t only bad. 

Praying for a summit tomorrow instead of a valley.

On the plus side, I wrote a new song tonight while trying to entertain Sunley:

I am feigning all this interest

In my least favorite of all toys

I wish that they would market these

As only for the boys

I hate legos

They are really not that fun

They’re basically Ikea

Except the prices are so dumb

I don’t understand

What the hype is all about

If you didn’t love them all that much

I’d for sure just throw them out

Now let us take a moment

To evaluate the truth

These toys are LITERALLY designed to break

And the pieces will be strewn

We’ll never find them all again

They’ll never be the same

If you’re really being honest

Yes you’ll say that these are lame

I hate legos

They are really not that fun

They’re basically Ikea

Except the prices are so dumb

I don’t understand

What the hype is all about

If you didn’t love them all that much

I’d for sure just throw them out

…I’m fine guys.

One last win for the day:

I went to Starbucks to get our little warrior some chocolate milk and a cake pop — I thought surely she’d at least eat the cake pop (spoiler: she didn’t). The lady at the counter asked whose birthday it was, so I shared that Sunley was in the hospital, and she immediately canceled my order and paid for it herself. Her name is Monique, and I’m pretty sure she might be an angel. I’m hoping we can meet her when we get discharged. Small acts of kindness, always.

Post-op Day Four

Today was a new day, thanks to Toradol. This blog post could be an ad for the stuff — We’ve been wanting to add it since surgery, but her platelet count was too low until late yesterday. And boy are we happy it’s on board now! We’ve been waiting for this corner turn for what feels like much longer than 4 days. Sunley woke up and said “I haven’t had breakfast!” and we knew it was gonna be better. She still isn’t eating enough, and has lost a little weight, but her demeanor is steadily getting better and better. Look at this smile she gave us this afternoon:

Sunley has 2 chest tubes left in her. The right one is still producing quite a bit, but the left one looks just about done. Surgery prefers to wait and pull them both at the same time, since removal is definitely traumatic, but if the right continues for a while, then we will probably decide to pull the left one before the right. Most of Sunley’s pain is coming from the left chest tube, according to her, “in my heart and in my back.” Massaging under her shoulder blade seems to help a little. The tubes are also sewn really tightly at the entry point, which is obviously necessary with a toddler, but it also makes dressing changes on them pretty painful (you have to slide thin patches of gauze underneath the tube, while trying not to move it). And of course stripping (emptying) the tubes seems to hurt maybe even more than the left tube placement. 

Sunley went on 3 walks today, and rode a tricycle around the halls. It was adorable, and she actually WANTED to get up and ride the trike! She was way more talkative with Derek and me, but of course still totally silent around the staff. Girl’s got major trust issues right now, and no one blames her for that! Tonight, while our nurse was stripping a tube, Sunley got so frustrated and looked at me and said “She’s hurting me!” It seems like no matter how much we explain it, the pain for gain concept is a lot for a 3 year old.

We tried to come off of oxygen today, but I really think that won’t be successful until we get the tubes out. The rate at which the tube will slow down is totally unpredictable, but I have said over and over, “We don’t care how long they stay in — the priority is that we don’t have to put them back!”  and everyone agrees, of course. 

We’ve added a bunch of lasix, tummy meds, and unfortunately Potassium. Several of the meds taste pretty bad, but nothing compares to potassium. She has thrown up twice after taking it. Because of all of this, we have spent hours convincing her to take any meds. How do you get a traumatized 3 year old to take oral medication when they are just flat out refusing? Wish us luck. Every part of recovery has its own unique challenges, and taking meds will probably remain a challenge for a while. Fortunately, Toradol and lasix, arguably the most important ones in her regimen right now, are administered via IV.

I have more thoughts, enough feelings to fill a book, but I’m gonna cap the update here tonight. I’m sure recovery will start moving at a faster pace now!

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.

Surgery Moved and T-Shirts Reopened

Well, our first day in Houston was quite a doozy. I planned on just posting a blog tonight about our AMAZING day yesterday, traveling in with the biker escort — but before I get to that, I need to let everyone know that Sunley’s surgery has been moved to Monday, April 18th, and that we are reopening the T-shirt drive!

We had a lot of interest in ordering more t-shirts to raise money for the Fontan Go Clinic, so you can do that here. This next batch will ship out in June, and we plan to all wear them again on Lemonade Stand days, July 22nd and 23rd! You can also read more about that fundraiser here.

Non-emergent surgeries often get bumped, so we were ready for the news that it would be later, but moving it up sooner has totally thrown me for a loop. We had a morning appointment at TCH today to get Sunley’s 24 hour holter monitor placed, which I expected to be a super short appointment. While in the holter lab, the coordinator called me to let me know that a more urgent and lengthy surgery would be taking Sunley’s spot on Tuesday, and she asked if we were up for doing surgery this Friday!! I tried to be flexible and scrambled the adjustments in my head, but told her there was just no way we could be ready by then. So she called me back a couple minutes later with Monday as an alternative. Our grandmas are coming early, and we now need to start the prescription nose swabs and pre-surgery body wipes, etc. We just haven’t done anything here yet as a family that we were so hoping to do before the big day! We came a week early to spend some slow-paced quality family time together, and while we still can, I’ll admit that I’m very frustrated to have to cut that short at all. Not frustrated with the hospital, just at the situation. I told a friend today that I don’t feel like I need to learn the lesson of “I don’t have control” again, yet here we are having yet another thing not go as planned. Because it’s a holiday weekend, we have to do pre-op stuff starting Friday, and we really need to watch our exposure to germs over the weekend, so we’ve had to cut a few plans out. While the surgery itself is only moved up a day, moving pre-op up by 3 days is what really changed all the plans.

All that to say, everyone wear the yellow shirts and listen to Sunley’s Songs on Monday, April 18th instead of the original date!! I’ll keep everyone updated throughout the day on Facebook/Instagram, and will post more detailed updates here on the blog as I find the time. Hopefully, her surgery won’t be moved again, but we are aware that when it comes to heart surgery, you just roll with the punches!

Now to all the silver linings:

This evening, I replaced the ugly grey holder monitor purse with Sunley’s very fabulous pizza purse, and it was such a little thing that felt like a huge heart mom win moment! Sunley absolutely hates the stickers on her chest, and loves her pizza purse. Even just that little bit of happiness made it a little better, for Sunley and for Momma!

We started this morning FINALLY reuniting Sunley with her very first leftie bestie, Oliver. Most of you probably remember several of our heart buddies from TCH four years ago, and this family was the first. Oliver and Sunley had their first surgeries on the same day, and we quickly bonded for life. He is Hypoplastic Left and she is Hypoplastic Right, so they complete each other. Oliver lives in Arkansas, but had a Cath procedure yesterday, so we were able to have a short and sweet visit with them as they headed home. It was so good to see them again. Leslie and I talk just about every day, so we mostly felt like this was totally normal, and it certainly didn’t feel like years had gone by! Having friends in the heart community has built us up more than I can ever express — they are a huge part of our support system.

Now, the bikers.

Yesterday. Was. Incredible.

Most of you have already heard about the biker escort that was organized for us by Catholic Cross Bearers. The amount of planning this took was unbelievable, and the escort was seamless. We met our first group in Edmond near I-35, and were escorted all the way to Houston by different groups. Of course, our kids were showered with gifts, high fives, prayer, and lots of encouragement along our stops. 

All of you know, I did not feel ready to go to Houston. But once I got on the road, and it really became physically obvious that we are not doing this alone, I just felt that much more ready. I know we can do this. I know we have to do this. And I know God will continue to bring unexpected blessings our way.

Looking out my windows and being surrounded by these strangers who took off work, adjusted plans and schedules just to drive into the fire with us — I felt like I could almost see the angels who were surely surrounding our transport. And I bet those angels look a lot like bikers: tough, compassionate warriors, some veterans of long ago battles, and every single one of them completely selfless.

That’s the word that Derek and I kept falling on to describe what these bikers did for us: SELFLESS. We don’t know the sacrifices they made to be there for us, but it certainly and at the very least took an awful lot of their time. And it lifted our spirits more than words could possibly describe. We forever love bikers the way we forever love nurses. This is why Jesus was so effective — because selflessness in its purest form is so incredibly unnatural for us humans, and so very rare. Thank you bikers. You have only a small idea of how much you’ve shouldered for us.

To top it all off, several friends came to see us off, and others were waiting on a pedestrian bridge in Norman holding a “Go Sunley” sign. And if that’s not enough to feel the love of God through His people, He just so happened to cover, COVER, the ground in the brightest yellow wildflowers once we got into Corsicana all the way to Houston. Pictures do not do it justice. The entire day felt like one giant hug.

God knew when these flowers were just seeds that they would bloom at the perfect time, for His little warrior on her way to battle. And for her mom. We are being carried. 

The song “Held” by Natalie Grant says it best:

This is what it means to be held

How it feels when the sacred is torn from your life

And you survive

This is what it is to be loved

And to know that the promise was

When everything fell, we'd be held

Please continue to pray for all four of our kids. Sunley keeps asking to “take me to the home with the rainbow room,” and Hadelyn is being extra helpful, which is beautiful, but also makes me wonder if she’s putting too much pressure on herself to be perfect. Ruger keeps forgetting the plan, and I think he’ll have a hard time not seeing Sunley for however long she’s inpatient. And poor little Davis is clearly so confused and thrown off in a new place, after just moving into our new house a month ago! They are all having fun and enjoying the new sights in Houston, but I know it’s hard on them too. Thank you all for carrying us.