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On Tuesday afternoon, one week after open heart surgery, Stella came home!

The end.

Wishful thinking, but it did bring a certain amount of closure to this phase of our lives. Ever since she was diagnosed in-utero on August 17, 2015, we knew she would have a least 3 open heart surgeries and that they would happen at birth, around 4 months old and around 3 years old. And that kind of anticipation will mess with you. We know this isn't going to be the end of it - that sooner or later she'll need another surgery, another cath, a pace maker - who knows? But the most long lasting dread is behind us. Can I get an Amen?

The transition home has been fairly smooth - but perhaps a little more work than I bargained for. Stella is still pretty unsteady on her feet but finally able to walk from room to room on her own. She struggles to stand up since she can't push or pull up on anything, which means I'm pretty much glued to her hip. I've had worse gigs, but I probably could have mentally prepared a little better for her physical limitations at home. We are adjusting! We had to go back to a training potty since its impossible for her to get on and off a real one without major assistance, and she is sleeping in bed with me so I can help her stay comfortable and give her meds every 3 hours at night. Our biggest hurdle is still oral meds. Her favorite party trick is to make herself throw them up - which means we just have to dose her again. I can't totally blame her, one of her diuretics taste like sin. But you try telling a 3 year old to suck it up, buttercup.

When we were discharged Stella still had a decent amount of fluid in her right lung so we will head down to the hospital tomorrow for a chest X ray and blood-work to make sure that fluid hasn’t grown (maybe it will be gone!?) The worst thing that could still happen is that the fluid grows and she would need to have a chest tube put back in. So if you haven't had enough of our prayer requests, pray the fluid looks smaller or is non-existent!

We are pumped to be home for Easter so we can attend church (sans Stella, too soon for her to be out and about) and give thanks for the incredible way God has blessed our family over the years and especially the last few weeks. I still have a hard time processing what could have happened if Dr. E hadn't seen and repaired where the stent in her left pulmonary artery had begun to erode into her aortic wall. It not for this surgery, that complication would have gone undetected and it could have been catastrophic. Doctors are amazing, but talk about a healing Savior.

If you don't have a church home for Easter on Sunday, please join us! We will be worshiping with our church, The Gathering, at Stifel Theatre at 10:30 am. ALL are welcome and I'd be so honored to have you by my side. I love you all so much and hope that no matter where you celebrate this Sunday, you feel the power and presence of a God who sent his Son to save us from all the pain and suffering life on this earth can bring. Hallelujah, what a Savior.

Man of sorrows, what a name
For the Son of God who came
Ruined sinners to reclaim
Hallelujah! What Savior

Stand unclean, no one else could
In my place condemned He stood
Now his nearness is my good
Hallelujah! What a Savior

Hallelujah, praise to the one
Whose blood has pardoned me
Oh what a Savior, Redeemer and King
Your love has rescued me

Lifted up was He to die
"It is finished!" was His cry
Now in Heaven lifted high
Hallelujah! What a Savior

When He comes, our Glorious King
All his ransomed home to bring
Then anew this song we'll sing
Hallelujah! What a Savior
Hallelujah! What a Savior

Hallelujah, praise to the one
Whose blood has pardoned me
Oh what a Savior, Redeemer and King
Your love has rescued me

Hallelujah, praise to the one
Whose blood has pardoned me
Oh what a Savior, Redeemer and King
Your love has rescued me

Hallelujah, praise to the one
Whose blood has pardoned me
Oh what a Savior, Redeemer and King
Your love has rescued me

One Week Post Fontan

Reality check. It’s been a week and Stella is going to be discharged soon. I’m really trying suck it up and remind myself that most kids spend 2-3 weeks inpatient after their Fontan. But if I’m being completely honest, I’m over it. I was over it at 6 pm Saturday night when I left the hospital and a crying Stella to finally spend some time with my big kids. I’m tired, the twins are sad and Stella is ready to bust out of room 16. 

Here is where we stand:

Yesterday (Palm Sunday or *ahem* Master’s Sunday for you Tiger fans) was a quiet day. Weekends around here are depressing and usually pretty uneventful, so she spent the day in bed weaning her oxygen and pain meds. 

By this morning we finally turned her oxygen off and she’s been totally stable without it. Her O2 is hanging out around 88 which is just fine - anything above 85 and the cardiology team is happy because her Fontan is  fenestrated.

Over the weekend Stella blew her remaining 2 IVs so all her meds need to be given orally which has become a complete battle. She loses her mind at the sight of a syringe and will make herself throw up if we force oral meds. I’d be impressed if it wasn’t so heartbreaking to watch (and mind numbingly frustrating since she didn’t do this a week ago.)

But the biggest issue that’s keeping us admitted at this point is fluid in her right lung. Which think about that for a second. She had open heart surgery a week ago and that’s our biggest complication. Chill out, Kate. But the fluid was there on Saturday and after a chest x-ray this morning it remains unchanged - which can become a major post-op complication if it isn’t monitored and treated properly. Right now the plan is to increase her diuretics in hopes that helps move the fluid out of her lungs. And in all honesty this is a totally normal complication post the Fontan. But it’s still a bummer.

So tomorrow morning we go for another chest x-day to see where she stands. From the discussions I had with her team tonight it sounds like they will send us home as long as it looks the same or hasn’t gotten worse. We live so close to the hospital I told them I would bring her in every morning for a chest X-ray if it means we can sleep at home. I don’t know why they that found that so funny? I get the idea this isn’t a negotiation. 

Oh and to spice things up we got a 4 month old roommate today. I like to think I’ve rolled with the punches the last week  but for whatever reason, I took this curve ball the hardest. Selfish? Yup. Do I need 3 more adults and a screaming infant in our hospital room right now? Nope. I’m sure they are all lovely humans but its a little crowded with all my extra hormones. 

Hopefully tomorrow is the big day! Which would be incredible. And if we have to hang out a while longer we can make that work as well. I have to remember (and perhaps pinch myself) that Stella is recovering at lightening speed. We are going home soon. Her surgery was a success and her surgeon discovered a potentially fatal complication and was able to fix it last Tuesday. We are living without the next surgery hanging over our heads (hopefully for a long long time). Sunday is Easter! We have everything in the world to be thankful for. Go Stella!

Pictured below: 1) Connor and Ellie spending some time with Stella today; 2) Stella in a wagon on the way to her chest x-ray; 3) After her bird bath; 4) Andrea brought a cupcake FTW (what bath?); 5) Hiding from mom and any form or medicine 

Day 5!

Quick Saturday update for you!

Stella got her third and final chest tube out this morning - it was totally uneventful and she wasn’t even drugged this time. The surgical fellow said she just “snuck it out”. I think Stella’s pain tolerance is about 90 times the rest of ours.

Her incision from surgery has been pretty nasty - I won’t get descriptive but it hasn’t been healing as nicely as our friends from CT surgery would like so instead of changing her dressing multiple times a day (and taping/untaping her sensitive skin around the wound) they brought in a pressure vac and sealed her entire incision with a special foam. The foam is taped to her chest, and then they poked a hole in it and hooked that up to a hose/vacuum which draws out fluid from the wound and increases blood flow to the area by decreasing air pressure on the wound. Medicine is so cool. It looks similar to how you would vacuum seal beef jerky so I’ve been joking that she’s going to taste mesquite flavored when it comes off.

We also did a little PT today! She walked down the hall (assisted) for the first time and did great. She will have physical and sternal precaustions for the next 6 weeks so we have to make sure she knows how to stand without pushing up with her arms - plus I had to re-learn how to pick her up and hold her without grabbing under her armpits. And she is a ways away from coming off oxygen completely. Just walking down the hall without any oxygen her O2 dropped to the mid 70’s. But she’ll get there!

That’s about it for today! She’s checking a lot of boxes daily. Her wound vac needs to stay hooked up for at least 48 hours so the plan the next 2 days is to rest and eat! There has literally never been a better weekend for the Masters. ⛳️

Stella took a wagon ride to get a chest x-ray!
My little beef jerky rocking her top knot and a smile, as always! 

A Good Friday!

Three years ago today Stella had her 2nd open heart surgery. It’s crazy to think back to that spunky 4 month old we barely knew but already loved so much. In honor of this milestone Stella decided to celebrate today by transferring out of the ICU! As of later this afternoon she will officially be a Pediatric Cardiology patient. 4 DAYS after open heart surgery. Y’all sure know how to pray. 

Picking up from my last post: 

The remainder of the day yesterday Stella spent a pretty decent chunk of time on Adam’s lap while I ran home to shower (also worth celebrating) and brought the twins to see their sister. They were both super sweet - Ellie had a dozen questions about every tube and wire, while Connor just wanted to know if she was ok before tossing her a dinosaur and raiding her candy stash. 

After they left Stella was exhausted so we let her sleep for a long, long time. Right before Adam was about to head out for the night she woke up in severe pain and once again we had to manage the pain quickly and work to calm her little body. It doesn’t get easier watching her suffer! Shortly after she had calmed down for the evening we noticed she had developed an impressive rash all over her torso and was itching and rubbing her face frantically. The jury is still out on what caused it, but the two popular diagnosis’s were: a reaction to being given so much morphine and/or a skin reaction from being wiped with chlorhexidine wipes so many times after she continued to throw up all day. On top of that, her blood pressure spiked and it was stressful watching her fidget as she was clearly uncomfortable. She eventually calmed down late last night and slept pretty well until 5 am. (One of us will come out of this hospital admission pinker than ever, and the other with the darkest eye circles you’ve ever seen). 

But today when Stella woke up it’s like she knew Mommy needed a W. She is doing great. On rounds the surgical team decided they would pull both her remaining chest tubes and finally remove her arterial line! She began eating small bites of food (gummy bears and roasted almonds = breakfast of champions). And she has been sitting up playing and smiling. 

After prepping her and taking a closer look the surgical team went back and forth and decided against taking out her left chest tube, but they did remove the right side! Stella perked up so much I can’t imagine how good she is going to feel when the third one comes out! They also reminded me it would have been incrediblely rare for her to have all 3 chest tubes removed that quickly and it is still incredibly fast to have 2 out in 4 days. I tried to act surprised. 😉

Right now her team thinks the third tube should be ready to come out tomorrow. Nothing is a sure thing in CHD land, but it’s looking good. If not she is managing the pain and moving around much better with just the 1 tube. She needs to start eating a little more than gummy bears and we are going to work on getting her in and out of bed and maybe even walking. Just checking box after box until we talk about going home next week! 

Sweet girl. She asks “will you take me home now?” all the time. But when I explain why we can’t leave quite yet she takes it in stride. Stella suffers so much, fights so hard and complains so little. I am sitting here in awe of her attitude. Aside from the obvious physical pain, she is just so dang upbeat. She’s funny for sure - today she grabbed a stethoscope and listened to one of the Cardiology Fellow’s hearts and told him it sounded like it was laughing “because I made it happy”. I can’t get over this kid sometimes. I spent so many days and weeks leading up to surgery crying and digging into my faith to get through this week and it it just comes by her naturally. 

We will keep posting updates and also add back in some instastories now that every update isn’t serious, scary or emotionally draining. (Sidenote - can you guys believe I went all this time without Instagram?! Two miracles in one week). I love you all to pieces!

Pictured below:1. Stella listening to the Cardiology Fellow’s Heart; 2. Resting before her second chest tube came out; 3. Partying after her second chest tube came out; 4. She gone

More progress!

Yesterday (Wednesday - Day 2) was a very calm day. Once we figured out a regimen to manage her chest tube pain, Stella was conked out for hours. They turned off her sedation and she woke up around noon requesting all her toys ... and Moana. Her team allowed her to just chill out all day, encouraging her to eat and drink and get out of bed. With the help of 2 nurses, plus Adam and my mom, I was able to hold her for about 30 minutes. Doesn’t she look thrilled?

In all fairness, Stella was pretty upbeat for a kid who just had her chest cracked open, but she refuses to eat a thing. It’s like the good ole days! 😩 Apparently it is totally normal for post-Fontan patients to have uncomfortable stomachs but we are really trying to encourage her to try some food because if she doesn’t eat they are talking about dropping a NG tube. For those of you who are new around here, Stella was tube fed for the first 14 months of her life. She had a NG tube through her nose for 6 months and then a G-Tube placed in her stomach. She has some serious oral aversion issues to being force fed and I can still hear that feeding pump beep in my sleep. Please pray it doesn’t come to that! We worked SO hard to wean off the feeding tube 2 years ago.

Last night was much quieter than night one. Stella woke up in a lot of pain once, but we had our very favorite nurse, Martha Claire, taking care of us so she got her comfortable quickly. Around 4 am Stella started throwing up which lasted until the morning but that seems to have passed as well!

And I’ve been saving the BEST for last: Stella just got her medial chest tube out! That bad boy is gone, as well as the surgical lines that ran to her heart. With the help of a little Ativan, she sailed through it like a champ. I’ll have what she’s having.

The plan the rest of today is to get her out of bed one or two more times, remove her arterial line later today and encourage food. From the looks of it, her other two chest tubes still have a day or two before those can come out. I’ll spare you the details.

We are feeling incredibly confident in her progress and equally grateful for the continued and committed prayers for sweet Stella. And of course, we are thankful for Moana.

Chest tubes

I’m going to make this short and sweet. These chest tubes are a son of a bitch.

Sweet Stella had a long, painful and restless night. For about four hours Adam and I had to hold down her arms and legs while she kept trying to sit up or get comfortable. Every little flinch incurred intense and obvious pain and she wasn’t having it. It was heartbreaking. I think we finally found a sweet spot with her pain medications and are praying she can rest and potentially wean off precedex (the medication keeping her sedated - I’m not sure it’s even working), and maybe sit up or move around. The sooner her lungs can expand and she can be active, the faster the tubes will drain and come out.

We knew this would be hard - and Stella is one tough cookie. But I’m handing out a Harper-Avery to anyone who invents a way to drain chest tubes faster 😉♥️

Enough Greys Anatomy sarcasm for now. Thanks for checking in on our girl!

Pretty and PINK!

Stella did GREAT today. She is in recovery in the Cardiac ICU and looks awesome. We all keep talking about how PINK her lips, eyelids and nailbeds are. I can barely type that without crying and I cry when I look at her. She is on about a liter and a half of oxygen and her O2 is hovering around 95 which is just insane to us! O2 in the 90’s? Pinch me. 

Like we said in the surgery post, the Fontan repair went smoothly along with the two additional repairs Dr. E performed. He was able to clamp the enlarged neoaortic root to narrow that a bit and ended up repairing the stent in her LPA because it had begun to erode into her aortic wall. That was unanticipated and the most difficult part of the surgery. And an incredible blessing he was able to see that today and repair it without compilation. I’m not sure which of us hugged him harder - me or Adam. I definitely get the award for most tears shed. 

We have a long few days ahead but it feels like an accomplishment to have surgery behind us. Stella has 3 chest tubes, 2 IVs, 2 surgical lines and is on a handful of medications to manage her blood pressure, fluid, pain, sedation, etc. Hopefully she will have a quiet night and we can keep her comfortable - so far she has opened her eyes a couple times and asked for Moana and water. Priorities. Maybe she’ll ask for mom at some point. 

Pray for pain management in the next few days. She isn’t pleased when they have worked on pulling drainage from her chest tubes, even as heavily sedated as she is. I can’t imagine how painful they feel. To give you an idea - a clock fell off the wall earlier and glass shattered everywhere and she didn’t flinch. But the second you go near those tubes she expresses a lot of pain. Bless her heart.

We love you all and I literally cannot tell you what it meant to receive the flood of texts and messages, videos and Bible verses you sent today. Stella has one fantastic fan club. We are so grateful for a healing Savior who knew the plan for Stella even when it didn’t make sense to us. She’s just getting started. 

Our pink lady! 

Surgery updates

10:30am - Stella started on time this morning, with her going back to the OR about 7:30a.  Stella went back to the OR watching Moana with a big smile. We’re still expecting 6 hours +\- and I’ll update this post as the day progresses.  As of a few minutes ago, they are  still working through scar tissue to access her heart.

11:55am - Stella is on the heart lung bypass and Dr. E working on the repair.

1:10pm - Cardiology did an echo in the OR and Dr. E is satisfied with the repair.  They are taking her off bypass now.

1:30pm - Stella is off bypass and beating on her own. ♥️ Her cardiologist stopped by and said her heart function looks beautiful. On top of the Fontan procedure Dr. E did end up repairing the enlarged neoaortic root as well as some tissue surrounding the stent in her left pulmonary artery. Once we talk to him we will try and explain that all in laymens terms and what it means for the future. They are closing her up now. We can’t wait to see our little champ!

2:50pm - We just talked to Dr. E who confirmed Stella did amazing.  We’re waiting as they finish closing the incision and get her off the ventilator.  We should see her in 45 minutes or so.   We’ll try to update in a few hours.

Tomorrow

It’s tomorrow. Ugh.

If you were watching me try and write this post right now, imagine the scene from You've Got Mail when Tom Hanks is trying to email Meg Ryan the night she thinks he stood her up. I've started this 900 different ways and deleted them all. I'm honestly just not very inspired. I'm sad. I'm trying not to be angry. I'm tired. And I'm doing my best to focus on how remarkably blessed we are to live in a city with an incredible children's hospital, surrounded by family and friends that love us so hard.

I was just talking to my mom and thinking back to 3 years ago when Stella had surgery at 2 days old and 4 months old. We had barely lived in St. Louis a year and while we certainly had family and friends, it was nothing like the community that is here for us today. Our immediate family still remains our rock. But our church and the friends that lead us to our church have been a game changer, our school friends are our cheerleaders, our work friends are incredible gift givers, and our best friends are our actual lifelines.

We are blessed, blessed and blessed to be blessed. I really cannot believe we did this 3 years ago without all our current people (not that we didn't have fantastic friends back then! We did!) But God knew we needed each and every one of them this time around. From my playgroup moms, to the core group I have known just a few months, to the spunky 25 year old that showed up on my doorstep a few days after Stella was born (we love you Margie and Co.) to the friends and family members that bring me life in the form of wine, hugs, inappropriate texts and unconditional love. What a crew.

Tomorrow we head into the hospital at 6:00 am. I met with her surgeon again today and he tried his best to put me at ease (I think the bear hug I gave him was a little too strong but he rolled with it). He said the surgery usually lasts 5-6 hours, with 80-90 minutes of that on the heart lung machine. Yowsa. Once again we will get updates on the hospital’s app that allows us to see actual pictures of her heart during surgery - we will be sure to post them later in the week!

From there, it's a total guessing game with no real playbook. Perfect scenario for an OCD heart mom, right? The biggest concern or complication that will keep us inpatient during recovery is drainage from the chest tubes on both sides of her body. And that is something that just isn't predictable. The chest tubes could come out in 4 days or 15 days - there is no magic solution to speed it up. The best estimate we have been given is about a week. So if you really want to hone in and pray for something super specific, that's it. Get the chest tubes out as quickly as possible. Because they also hurt like hell. Her surgeon said to anticipate 10-14 days before we get discharged, but her Cardiologist has suggested it could be closer to 7-8 days so we are staying optimistic that Stella will once again work her magic and breeze through recovery.

On top of that, pray for Stella. (right?)

Sweet Stella. She knows she is going to be in the hospital and honestly doesn't seem scared. I'm a little jealous. I hate that she is going to wake up from surgery with a dozen wires running through and around her little body. I wish I could prepare her better and at the same time pray she won't remember this later in life! I'm angry this is our reality and grateful it isn't so much worse. This blog is becoming a broken record.

We will start a new post tomorrow and keep it updated throughout the day, and each day until Stella is out of the ICU. I know Instagram and/or Facebook are easier to check - but I don't have it in me to open those apps sitting in the ICU. Selfishly, its just depressing to see happy, healthy kids when I'm trying to update you on the latest. Sorry. And once Stella is back to her normal, hilarious, spunky self you better believe I'll be blowing up instastories again!

Thank you, thank you, thank you for every prayer and every act of love you show us tomorrow. We need it and we feel it. We love you all.

God bless Stella’s heart!

Oh love that will not let me go, I rest my weary soul in thee

I don't listen to a lot of Christian music. If you ask my kids what we play on the way to school they would probably respond: Taylor Swift, Pitbull or the Greatest Showman. Admittedly, I could do better. All that being said, one of my very favorite parts of church has always been the music. And that has been one of the things that drew us to our current church, because the music and the way they embrace worship is so powerful.

We talked to Stella's Cardiologist this afternoon and her entire team was unanimous in voting against any surgical intervention of her expanded neoarortic root. YAY. We are still going to talk to her surgeon in the morning, but we feel like we have a good understanding of what has caused it to enlarge, how to best monitor it going forward and why it isn't as scary of a complication as we thought it was. Stella is still special (always) in that they don't see this complication a lot with single ventricle kids. However, they do see it more commonly in other CHD cases - so they have a good baseline to monitor how this root could potentially grow, and unfortunately, what another open heart surgery to repair it would entail.

All in all, we are feeling a whole lot better than we were a week ago. This afternoon I was texting with a friend and told her that I keep thinking about all these complications like a bucket. We add in leaky valves and enlarged neoaortic roots and the bucket keeps getting fuller, but we don't have the option to unload anything from it to make it a little lighter. But ultimately, as long as Stella is stable, I'm cool carrying around this damn bucket.

I just said damn after starting off this post talking about Christian music. You are probably thinking I should lay off the Pitbull. But here is what is funny about today. While I was waiting for the Cardiology team to call a friend suggested I listen to a sermon from a few weeks ago. The sermon was awesome, albeit nothing relevant to what I was worried about. Regardless, it helped pass about 25 minutes of the day waiting for the phone to ring. And at the end of the sermon, in closing prayer, the pastor quoted my favorite Christian song ever. I've quoted it on the blog years ago, and I have it printed on a canvas over Stella's crib. And in that moment, everything felt peaceful.

My favorite, from Indelible Grace: "Oh love that will not let me go, I rest my weary soul in thee"

Thank you, every single one of you, who has emailed or texted that you prayed for us today. We felt it, we love you, and we hope you can take these lyrics into your week feeling as full as I did today after listening to Yvi's sermon and prayer.

O Love that will not let me go,
I rest my weary soul in thee;
I give thee back the life I owe,
That in thine ocean depths its flow
May richer, fuller be

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be

O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust lifes glory dead,
And from the ground there blossoms red
Life that shall endless be