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

Giving Thanks and Paying it Forward

Happy November, dear friends and Stella prayer warriors.

We are so grateful to be walking thru a season of Thanksgiving with little to report. Stella continues to THRIVE - I think I should be more blown away by her progress but I forget I should even be blown away. She is treated like a 3 year old in this house, she is constantly keeping up with her big brother and sister. It's something I don't stand back and appreciate enough. She is funny, bossy, strong and super smart. 

Last month we had a bought of Croup that turned into RSV and an overnight stay at the hospital. But Stella recovered quickly and clearly just wanted to pop in and give some hugs to her favorite doctors and nurses at SLCH.

The twins have started school three days a week which has given me a lot of time to just treasure Stella at this age. I never got to enjoy just having one kid and we have the best time running errands, folding laundry, going for runs in the stroller, and meeting some very special friends for play dates. If I had any personal prayer requests it would be that we keep on keeping on, life is very sweet right now.

And now for an update on our friend Anna from my last post:

Thank you, praying friends! Anna received a heart transplant on October 31, 146 days after she was admitted last June (146 days waiting at Seattle Children's Hospital, every. single. day). She has hit a few bumps in the road but her prognosis is very hopeful (currently she isn't in rejection) and her family is so grateful for the prayers from strangers across the country.

Here is when I ask for your help in this season of giving:

Anna remains inpatient recovering from the transplant but her family is hopeful to take her home in the next few months. Anna's family has felt financial strain dealing with the cost of adoption, all the time she has been inpatient, caring for their two older children and juggling work and home life. Please consider lifting that burden and donating to Anna's family - I know Stella couldn't ask for anything better! If not a birthday present to Stella, a Christmas present to Anna!

Stella turns 2 next month and instead of gifts, we have asked our friends and family to consider donating to Anna's family. I'll be collecting gift cards at her birthday party to mail to Anna's mother, BUT you can order a gift card online and email or mail it to me! I'll send them all at the same time after the party so she isn't too overwhelmed with a bunch of emails. (Plus, it's a surprise!) Thank you, Stella Prayer Warriors! You really are the best club in the whole world. 

Links to places to purchase from below!

Visa or Amazon Gift Cards

https://www.amazon.com/s/?ie=UTF8&keywords=visa+gift+card&tag=googhydr-20&index=gift-cards&hvadid=229164845750&hvpos=1t3&hvnetw=g&hvrand=15464987440224585046&hvpone=&hvptwo=&hvqmt=e&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9022877&hvtargid=kwd-489468986872&ref=pd_sl_6r3ti2yc9w_e_p37

University Village Dining (close to the hospital in Seattle, can be used in any store or restaurant) 

https://uvillage.com/guest-services/buy-a-giftcard/?v=1511193042477

Metropolitan Market (Market in Seattle next to the Ronald McDonald House)  

https://www.giftly.com/gift-card/metropolitan-market-seattle-11?spec=treat-gcd

*** if you plan on sending me something please give me a head's up so I know to look for it :)

Some pictures of Anna in case you need any more motivation!!! (And Stella, always)

Stella LOVES her cousin Hazel (and not being the "baby")

Ellie and Stella got busted in a Beer Garden

Stella and one of her best buddies, Teddy, celebrating Halloween

Silly Stella

And here is Sweet Anna post transplant! Rocking her 4 chamber heart!

How ridiculously cute is Anna's family?!?

💕💕💕💕💕💕💕💕💕💕

Things to clap about and things to pray about

A little recap/update since we last checked in:

On August 17, exactly two years to the day since we received Stella's CHD diagnosis, we had a big morning of appointments at the hospital to follow up on Stella's heart and neurological development. Stella's first open heart surgery was when she was 2 days old and we will never know how being put on bi-pass that early (or again at 4 months) affects development, but we are grateful for the therapies she receives as a result.

Six months ago the Neurology Attending was concerned about Stella's gross and fine motor development, as well as speech. The term he used was "developmentally delayed" (which made my head explode) and recommended we turn up the faucet on her therapies. I have the most respect for her doctors, but in my opinion Stella just didn't feel like playing their games/doing their tests that day. Her occupational and physical therapists agreed and we pretty much stayed the course we were on. Stella doesn't miss a BEAT, and she doesn't do anything she doesn't feel like doing. 

In the past 6 months Stella has taken off. She not only walks, she RUNS. She jumps, she has promoted herself out of a high chair to the big kids chairs, and she talks non stop. Girlfriend is bossy. Needless to say, when we walked into the appointment on August 17 Stella did not disappoint. Little miss show-off chatted it up, passed every test with flying colors and was labeled "thriving developmentally". GO STELLA. (But no, you still cannot go off the diving board at the pool. Stop asking). 

We also had an echo to check on her heart and everything remains stable. Her two valves have the same leakage that we saw 5 months ago, which she can tolerate for now. We are grateful to walk into cold and flu season with a stable report and pray it remains just that!

As happy as we are to "celebrate" a good appointment, we remember that "stable" doesn't mean healthy. Stella has half a heart. She is missing the more important ventricle we all have and need, and will never be healthy. Her oxygen saturation hovers around 80% ... a healthy adult hovers around 96-99%. The fact that she is thriving at 80% is proof that God has made her to be one resilient little fighter. She is my actual hero.

And with that said, we also have a new prayer request for a friend. One of the pastors at our church has a 2 year old niece in Seattle, Anna, that has the same CHD diagnosis as Stella and is waiting for a heart. We don't know her family personally, but I've read her story and it's hit all of us hard and made us realize how fortunate we are that Stella is stable. Similarly, Anna remained stable after her 2nd surgery until this summer when she developed a blood clot that burst in her heart (something that could easily happen to Stella or any kid with HLHS). She's had numerous strokes, seizures and has nearly died countless times in 3 months. She is Status 1a on the transplant list and she NEEDS a heart, asap. Her family is a strong, praying, Christian and get this - they adopted Anna. They CHOSE to bring home a baby with a broken heart and a life long battle with CHD. Please pray for this sweet child and her family! 

Below - the reasons we clap, pray and sing hallelujah ... and pictures of sweet Anna to keep in your fervent prayers.

Summer Lovin

It's been too long! My Aunt Nancy (hi Nancy!) has kindly reminded me for the past month that we haven't had an update on our little Stella - and while no news is good news, we can always brag on her!

We've had an AWESOME Summer. We just wrapped up our second trip to the beach and I'm happy to report that Stella finally likes sand. Which is probably the most exciting milestone for us beach goers - but not as significant as the other major milestones she's reached in the last few months. Stella is walking/running/jumping/climbing - she is literally always on the go. We are pretty certain she thinks she's 3 years old like her siblings and so far there isn't much they can do that she can't (I still won't let her go off the diving board, I'm such a mean mom). 

Just recently her vocabulary has exploded - her delay in speech was one of the neurologists major concerns back in February. Now she never shuts up! She loves to go thru the family roll call (Mommieee, Daddieeee, Ellieeee, Bubba!) and can string a few words together ("more water daddy!"). It's honestly amazing to think back to 6 months ago when she refused to TRY and walk or make a peep, and see this bubbly toddler we have on our hands! 

Health wise she has done great, aside from a minor cut on her foot that landed us in the ER briefly last month (turns out when you are on blood thinners and cut off the bottom of your toe it takes a really really long time to stop bleeding). She has an appointment with the neuro-development clinic and our cardiologist in a couple weeks and we are all anxious to see how her heart is holding up since her last echo. 

This Summer we have been really blessed to make so many new friends in our neighborhood. We go to a Craft Club every Monday afternoon, swim almost daily, stay up late and soak up as much as we can with our precious girl. All her therapists have been blown away by her progress and she has graduated from Nutrition and OT - we only see the physical therapist every other week now! 

Ramping up into Fall our biggest worry will be illness. The twins start school in a couple of weeks (hallelujah!) and will certainly bring home new germs. Keeping her healthy and out of the ER is our number one prayer!

Thank you for checking in on us and loving Stella so wholeheartedly - I'll be back after August 17th with an update on her upcoming echo.

FINALLY, not crying and loving the beach!

Water Baby

Baby you're a firework!

Quick trip to the Zoo, unimpressed by the Carousel 

Happy Fourth of July!

Literally can't slow this fish down

Hates ice cream

Gosh we love you, little Stella bean!

Some Spring updates - and some unexpected ink

Since our last post, we moved! It's actually been a while since my last post, but starting back in December, the Stacy party of 5 now lives in Warson Woods, about 5 houses down from the house I grew up in as a child. It is safe to say we are beyond excited to be in a neighborhood filled with kids, parks and a pool. We are getting settled and so grateful for the little world of people that love us and help us that has helped make our new little world happen.

We also celebrated Christmas, Bubby's 61st birthday, Izzy's 60th birthday, Valentines Day and the twin's 3rd birthday! Stella gets dressed wearing heart outfits more mornings than not, because each day we also celebrate her continued growth as she becomes a very serious toddler. She isn't walking quite yet, but is on the move in every other way imaginable and Mommy is anxiously awaiting the departure from "suicide watch" as she goes from attempting to be mobile to actually walking :)

Unfortunately, Stella has fallen ill more than a couple of times. We've had some of ear infections, colds, viruses, and every stomach bug you can name. But lately, little girl has been really sick. She earned herself a few chest x-rays to rule out pneumonia, and another unpleasant test I won't describe to rule out a urinary infection. Despite all of this, she kept a healthy appetite and finally got her G Button out! For the first time in her entire life, she doesn't have a tube sticking out of her. Taking out the G Button was such a simple procedure, but I can't begin to describe how it feels to look at my baby and not see a tube in sight (cue the mom tears.)

After we removed the G Button, Stella got sick (AGAIN). She has fought 2 or 3 more stomach bugs (I'm losing track) but remains our smiley, spunky, fighter. She had an echo last week and her heart remains "stable" - about how it looked at the last appointment. Her doctors continue to struggle to visualize any flow into her LPA, but given it looks the same as the last echo and follow up CT with contrast, they feel confident it is there.


One announcement of sorts - I've been invited to attend the NPC - QIC Spring Conference as a parent representative with St. Louis Children's Hospital in May. The National Pediatric Cardiology - Quality Improvement Collaborative is a group of clinicians, researchers, and parents, from across 60 medical institutions who have been collaborating to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrom (HLHS), and other univentricular hearts, have hope. They specifically focus on the "interstage" period - between the Norwood and the Glenn - when the risk of mortality is the highest, working to improve quality of life and life expectancy for single ventricle and CHD babies.

I'm flattered to be the first parent representative attending with SLCH and am anxious to spend an entire weekend with doctors, researchers and parents discussing all things HLHS. The older Stella gets, the harder it gets to remember she is in fact very sick. She LOOKS so good, and even though she hasn't been feeling well since for months, she has recovered from every virus. I struggle every single day trying to treat her like a "normal" baby - and freaking out that we could lose her well before any of us are prepared to. My biggest prayer in attending the conference is to meet other HLHS mom's who have paved the road ahead of me. I know many of them have lost their children (not a club I'm looking to join) but I also know many of them have kids who've been through the 3rd surgery and beyond and I think for my Mama heart, meeting them and forming relationships will help me prepare to take care of Miss Stella's heart in the months and years (and I pray MANY years) to come).

Oh, and finally, a happy story. Maybe I should have started with this one. 

A couple weeks ago we attended a reception with my parents at our very favorite restaurant (Olive and Oak) to celebrate the successes of our very favorite foundation that raises money for CHDs (The Ollie Hinkle Heart Foundation). That afternoon Jen Hinkle spoke and my mom noticed that Jen had the cutest heart tattoo on her wrist. If any of you know my mom (perhaps better known as Izzy or Lizard), she is NOT one to be fond of body art :) In fact, I got a tattoo in college and she didn't know about it for a couple of years and when she did find out about it she called me at work and, I quote, told me "I hope you were drinking when you did that!"

Needless to say, Izzy has not been pining away about the tattoo she never got. But the moment she saw Jen's heart tattoo, she knew that is what she wanted to honor and keep Stella close to her heart and in her prayers. Immediately, I told her if she was getting one so was I! Our husbands assumed we had been drinking too much wine on a Sunday afternoon and rolled their eyes ... and then we started googling tattoo parlors :)

About 2 hours later Izzy and I were waiting inside Iron Age for a turn with tattoo man Chris (Bubby had to go home and grab mom's drivers license - she didn't think to throw it into her clutch hours earlier, before the thought of a tattoo EVER entered her mind!) Watching her fill out the paperwork in her Tom's wedges and Lilly poncho - it was just the cutest. We fit RIGHT in. 

By 8 pm, about 4 hours after Jen had picked up a microphone and flashed her little inked heart, Mom and I had matching tattoos (that Bubby paid for!) and I had the best Sunday afternoon story I could think of. 

With that being said, some snaps of life lately

Our Christmas Angel

When Bubby turns 61, we celebrate by stripping?

And we got a new President

Welcome to the Stacy Zoo

She drives like Mommy

Happy Birthday Connor and Ellie!!!

Hashtag #IzzygetsInked

And for kicks, the future of the FBI - Suns out, Guns out!!!

Rejoice!

Stella got an early birthday/Christmas present yesterday!

After an eventful CT - even using the "IV Therapy" team that specializes in putting needles in tricky kiddos, her first IV blew and it took twice as long holding down a screaming baby while they found another vain ... Stella was a total trooper. We made it thru the CT with the help of sugar water, Daniel Tiger and some major prayer warriors. We know so many of you were praying hard for our girl - thank you!!!

A few hours later her cardiologist called and gave us the great news - she DOES have flow into her Left Pulmonary Artery (LPA). This was the more urgent concern after her last echo and now that we know it is there, she won't need a cardiac cath or any imminent procedures. Hallelujah!

Going down the road we still have a LOT to monitor. The flow into her LPA isn't as great as the flow into her RPA (the right pulmonary artery), but for now, it won't need intervention. So we continue to watch the LPA as well as the leakage in her new aortic valve and all in all, WE PARTY.

Happy birthday baby girl!

Milestones and Set Backs

In a little less than a week Stella will be ONE! I cannot believe a year ago we were anxiously awaiting her arrival, full of fear and anxiety, and now she is the light of our lives! But in the category of never dull, here is what's new:

Since her bought with RSV Stella has struggled to put on weight - she lost over a pound (and was already a peanut) but we are back to making progress with sippy cups. Most days if we have to hook her up to the feeding tube, it is simply for water to make sure she is hydrated. She hated drinking formula (can you blame her?) but will finally drink whole milk and we are just thrilled to see her chug :) She loves provel cheese, eggs, cereal - she literally eats more than Ellie will most days. FINE. Ultimately, it has been left up to us when to wean her from the feeding pump and we feel good about how she has done. Would we like a plump baby? Sure. Are we ever going to have one? Time will tell.

Unfortunately, in terms of set backs, Stella had an echo last Wednesday and it was the first time we didn't get a glowing report from the Cardiologist. After an hour with a screaming baby and a cold ultrasound probe, the doctors were not satisfied with the images they saw and requested we bring her back for a CT with contrast to get a better picture of what is going on inside her heart. Specifically, they would like to see if there is flow into her Left Pulmonary Artery. If there is not, she will likely earn a trip back to the Cath Lab where her doctors could open the LPA - a "simple" repair in the world of a heart baby, but it still carries risks and means more hospitalization.

In addition to concern over her LPA, her Cardiologist is concerned about regurgitation (or leakage) in her new aortic valve. A normal heart has 4 valves, Stella's heart has 2. The new aortic valve was built by Stella's heart surgeon during her first surgery when she was 2 days old because the valve that typically comes from the aorta was too small. Since then both of her valves have had mild leakage which is tolerable and something we knew had to be monitored. But since her echo in May, the new aortic valve has gone from having mild leakage, to mild to moderate leakage. What does this mean? Nothing great. For now we will continue to watch the valve for increased regurgitation (leakage). If it continues to become moderate, she will be saddled with medicine similar to an ace inhibitor 2 or 3 times a day (with no end in sight). Should the leakage become severe, Stella would need the valve repaired (meaning another open heart surgery) or would be put on the transplant list.

We've come so far in a year beating so many odds. Stella has recovered from surgeries faster than we imagined, and despite being a very sick little girl, charms the socks off of everyone she meets. She is that happiest kiddo and just brings JOY to our world. The mere discussion of these set backs, the idea of more surgery so soon, and the suggestion of a transplant list (albeit years down the road) have sent me into a tailspin.

We ask for prayer leading up to her CT on December 13th - for clarity and wisdom for her doctors (and peace for her parents!) We pray the leakage from her new aortic valve doesn't worsen and that we have a very long time with our Stella bean before the words "heart failure" are ever spoken in an appointment again.

I've realized the Christmas season will never be the same, it will never feel normal. Glory to God in the Highest is taken literally, and on earth peace, goodwill toward Man is what we wish for. Thank you, Jesus, for a year with Stella, and for all the years we have to look forward to. Christmas birthdays are a blessing, as is our baby girl, your saving grace, and your Father's love for us all.

Check back in on 12/15 for a post CT report and a VERY happy birthday celebration for the girl that has stolen our hearts!

Stella is very happy about her new pajamas

Oh hey, I eat now.

With Izzy and Bubby celebrating the best day for the best cause at the I heart Food and Wine Festival