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

Pre-Fontan Cardiac Cath

This ride is so crazy. And a constant reminder that we aren't in control. I know we posted on Instagram about how well Tuesday went - and it really did go so well - but we also got a little ahead of ourselves in the "no surprises" category. We tend to forget that 1). Stella is special and 2). Our road isn't up to us. 

I wrote an entire blog post the night and morning after her Cath and didn't actually post it because I couldn't get pictures to load while we were still in the hospital. Since then, we have learned about a little hiccup that could effect her next surgery -and I'm being kind of cute when I use the word hiccup. It might be the chardonnay talking. But instead of wiping out that entire post and starting over, I actually want to keep it and then add the latest developments at the end. So humor me? Here we go:

I’m starting this post next to a very groggy Stella at 9pm, 9 hours after her cardiac Cath, and I’m just feeling immensely grateful. Stella was a complete rockstar today. She woke up with the best attitude, was smiling and incredibly brave in pre-op. I really can’t believe how well today went after weeks of stress and tears. We needed this day before her surgery next month. 

A quick recap: Stella was the first case this morning and they took her back around 7:45 am. And if you aren’t on social media, then you didn’t see that her arrival in the Cath Lab was nothing short of BALLER. We were blasting Taylor Swift as she drove a mini bright red convertible into the Lab (Adam finds it important to point out the make of this tiny toy car was a Bugatti). Regardless, it was super cute and made the anxiety of going into an OR room melt away (for all of us). She was so brave as they prepped her and we got to stay until she fell asleep. The entire process was completely void of any anxiety and was totally unrushed. I said immediate prayers of thanks for our awesome hospital. 

Stella ended up under anesthesia for a while longer than we anticipated - about 4 1/2 hours. But she did great and the cardiologist updated us the whole time. As expected, she needed some intervention while in the Cath Lab. They ballooned the stent in her LPA and coiled three big collateral vessels. See below for before and after pictures of what that looked like! It’s kind of mind blowing. The Cath Lab Cardiologist took tons of pictures and measured pressures in all her valves and other important heart things I pretend to understand like cardiac function and flow to the lungs/right ventricle. 

In recovery, Stella was a champ. She had to lay still and flat for 3 hours and woke up after about 2 hours of foggy sleep. Ice cream and a kindle kept her completely content and we headed to a (private!) room just in time for some visitors. Connor, Ellie, AK and Lottie had all been waiting for hours to come say hello and were super excited to see she was awake and didn’t have any scary machines or bandages. I think having that positive image of Stella going into surgery is going to help them process and cope with the questions and emotions ALL of her tiny siblings and cousins will have! 

For the rest of the day and night we just kind of hung out. Stella was punch drunk until about 10pm when she realized a slumber party with mom was just what the doctor ordered. Her fog lifted and she did her best to poke me with her unicorn horn 900 times, refuse to cooperate when the nurse took vitals and basically ensure I slept no more than 3 hours total. 

All in all, yesterday couldn’t have gone better. We fully attribute that to the prayers you all said for us this month and all day long. We are the most blessed family on the 7th floor and we aren’t taking it for granted. I know that open heart surgery next month isn’t going to be a walk in the park, but I'll say it again - we NEEDED a good day.

Back to present day:

LOL! (said God, probably) We have a new complication. And if you are in the medical field and read this explanation please remember I barely made it thru 7th grade biology, so explaining heart anatomy isn't my thing. (But if you are reading this and judging my grammar, know I was the editor of my High School newspaper so I'm probably right on that comma placement). 

Ok, back to Stella's heart. The day we got discharged the head of the Cath Lab came by and told me he had seen the results of her Cath and Echo and wanted to hit on all the potential issues going into surgery. I fully understood all of them until he mentioned her enlarged neoaortic root. What is that, you ask? Great question. Her neoaorta is something her surgeon built during her first open heart surgery and all the blood leaving the heart goes from the right side of her heart through her pulmonary valve and out to the body through the neoarta. Got it? Sweet.

Stella has 2 valves instead of 4, and her aortic valve has always had mild leakage but nothing her Cardiologist has ever been concerned about. So this enlarged vessel isn't a good thing, but we don't know how long it has been enlarged. We also don't know what caused it to be enlarged. Its a basket of "we don't knows". Its nothing anyone has seen or can barely see on an echo now that they know it exists, so that makes it more frustrating for all of us (because nothing about this has been hard or frustrating so far)

Here is what we do know about the next steps going forward. Our cardiologist will present Stella's case before the entire Cardiology Team on Wednesday, which is something that should have been a formality and now will become a conversation. Do they repair this enlargement while she is open on the table? The Fontan procedure involves the outside of the heart, so if they repaired it her surgeon would be cutting into her heart again and adding to the time she is put on bypass. BUT, if they don't repair or address it, and it worsens, would she need another open heart surgery to repair it? How could it negatively affect her heart anatomy if it stays the same or gets worse? What would even be the best way to monitor it since we can't see it on an echo?

Lord, please come back soon.

Because that is where we stand. In prayer, I'm here holding a Bible and a bottle of xanax. I wish I were kidding. It's been a hell of a week. We lost a very close family friend, my little sister's mother in law is losing her battle with cancer, and it just feels like death is everywhere. As we are surrounded by the reality of how futile our earthly life is, I find hope and strength knowing Christ came to this broken place to save us and make all of our hearts new again.

Focusing on this one, as always:

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”

2 Corinthians 4:16-18  

As promised, pictures from Stella's Cath on Tuesday! Stella “big pimpin” into the Cath Lab (sorry, mom), before and after photos of one of her largest collateral vessels, her cousin fan club, and a few more because she so dang cute I can’t handle it. 

Up bright and early and ready for my Cath, Mom!

Hmmm. Those machines look important. I'm going to rip this tape off my finger and screw with them immediately. 

Hot Rod knows how to roll into the Cath Lab like a BOSS

She drives like her Mom

Kind of a cool image of Stella's cardiac function before they did any intervention 

What her massive Lima collateral vessel looked like before the Cardiologist intervened!

And after!!!

Stella has the best fan club on the planet! 

Quick update

Our little heart warrior impressed everyone today as she drove the kiddie Bugatti into the cath lab.  Seriously, google remote control Bambini.  

Stella kept up her brave face all the way through the gas knocking her out.  We are in recovery and she is doing great.  Kate will post a longer update (relatively) soon   In the meantime, the heart catheter went as expected.  They enlarged the stent in Stella’s LPA and embolised 3 collaterals.  She should be all set for the Fontan in a few weeks.  More to come...

We're Back!

Its crazy that I didn't post one time in 2018. Sorry? Maybe not. Taking a year to feel "normal" was awesome. Stella has remained incredibly healthy for the most part and with the exception of some hospital admissions and a broken foot, to most onlookers we are just the usual hot mess of a family of 5 with 3 small kids.

If you are reading this then you probably know that we have been approaching Stella's 3rd open heart surgery for quite some time. We've known since the day of my fetal diagnosis that she would require at least 3 open heart surgeries, so as pink and healthy as she seems, it was always inevitable that she will need the third phase reconstructing her heart anatomy. She is booked with Dr. E for Tuesday, April 9th.

So it sucks. (Sorry mom, I know you hate that word). But every time I have thought about this day for the last 3 plus years, that is what it boils down to. It's also a lot harder now, compared to how it felt  handing over our 2 day old or 4 month old - because lets face it - we are pretty dang attached to little Stella Stacy. So the level of dread, the fear, and the unfairness of it all is piling up as April 9th approaches.

I'm back on the blog well in advance of surgery for a number of reasons. First and foremost, we are hoarding your prayers and want to cling to the community of people that took care of us after Stella was born. Stella's fan club has multiplied since then and we are immensely grateful for everyone that is already preparing to love on us and on our kids, and we know you will storm the Heavens with prayer for the Stacy clan.

I'm also here to say THANK YOU for supporting our little tee shirt campaign this past month. If you missed it, with the help of my dear friend Erin, we created tee shirts featuring Stella's EKG in an effort to bring a little JOY before our sucky Spring. Every time someone sends me a picture of themselves or their kids in a Stella shirt my heart leaps - it might have seemed like a small thing when you purchased them, but I'm here to tell you, we felt the love.

If you missed the chance to order a shirt, the link is currently live again and will be until March 6th.

https://www.bonfire.com/god-bless-stellas-heart-1/

Finally, we wanted to bring back a place that provides us an emotional outlet while updating all of you on the ins and outs of hospital life. Social media is great, but simply put, is the last thing we care about logging into and scrolling through to update when our child is in the ICU. For whatever reason, this blog allows me to feel like I have a little purpose - especially while I'm sitting next to Stella knowing there is next to nothing I can do take away her pain.

Prayer Requests:

On March 19th Stella has a pre-surgical Cardiac Catherization. This is a routine procedure before any open heart surgery, but we anticipate some intervention to coil any collateral vessels she may have developed as well has potential intervention to expand the stent that was placed in her left pulmonary artery during her 2nd surgery. A couple of weeks ago Stella came down with a nasty stomach virus that landed us in the hospital for 3 nights and during her stay she needed IV fluids a number of times. She has difficult veins and getting an IV into her arm was not easy (hello 6 blown veins over the course of 3 days) so needless to say, she (and I) have a great deal of PTSD about needles and nurses touching her. Please pray that anxiety has lessened some before this next procedure.

Please pray for our big kids. They have no memory of Stella's first and second surgeries (perhaps the one bonus to having these kids so close together). But now they have very real concerns about her health and they ask us a lot "when is Stella going to have her belly cut open again". They pray for her constantly and we want them to know she is safe and everything happening to her is because we want her to be healthy for a long time.

Please pray for the families with much sicker kids than Stella! I'm blessed to have met so many amazing moms and families at Children's Hospital and as much as our situation sucks - it could be so much worse. I have to mentally and emotionally prepare for the moms I'm going to see in the halls that are living in the hospital waiting on a transplant or a miracle.

Closing out this post I'll leave you with a link to a sermon that has brought me peace in the past few weeks. Our church had been focusing on the old testament Joseph story and our Pastor closed out the series with a message I think everyone should hear. I was actually out of town and missed church on this particular Sunday so I ended up watching it on my phone from an airport. As the sermon was coming to a close I got an email notifying me that we had raised over $2000 from our tee shirt campaign - which was just so perfect. We created the tee shirts to spread JOY and as an opportunity to bless other families thru our sweet blessing that is Stella. If you need to hear how God can bless your life, take 25 minutes and listen in - you won't regret it.

https://soundcloud.com/the-gathering-umc/living-the-dream-pt-5-rev-matt-miofsky