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

10 month update and RSV

Honestly, I can't believe its been 10 months. I started writing this update at 9 months (sorry Nancy) but life has kept us busy - in a good way! Then today hit us and Stella has RSV. So we are back in the hospital keeping a close watch on her fever, oxygen saturation's, and just making sure she gets better! This girl is a trooper and we have had a good day reuniting with old friends on the 7th floor who are working on getting her healthy and HOME!

Backtracking for a moment, the fast few months have introduced us to a whole new phase of life. The twins are terribly two - one moment sweet, smart and full of joy, and the next moment the living spawns of satan. Its entertaining at best, and certainly explains Mommy's 5 pm glass (chalice) of wine at worst. But remarkably, in this new phase, they have decided they like Stella! They still refer to her as "baby" but are champion paci fetchers, peek-a-boo players, and stand up older siblings. I knew they had it in them!

And Stella is a delight. She is non-stop happy, full of smiles and laughs and everything a 10 month old should be. A few weeks ago we had the privilege and blessing of baptizing her at Central Presbyterian Church - where I grew up, where Adam and I were married, and where we baptized the twins. My dad (Bubby) was the elder that prayed for our family following the baptism and I for one felt the Lord squeeze us - a reminder that he has been with us through this entire journey.

Other milestones:

With the help of our new Occupational Therapist, Stella sits up on her own easily and has recently started crawling! We love watching her scoot around for toys, and are just beaming with pride over her progress.

Stella also traveled with Mommy to Montana to visit our dear friend, Jeannie. She rocked her first couple of flights, had lunch with a Senator (seriously) and enjoyed all the summer had to offer from the 4th of July to the Olympics. We also made a quick and very special trip to Chicago to visit Great Grams and celebrate her 86th birthday and then dressed Stella as a happy elephant for halloween. And finally, in other news, headbands are back.

As I was wrapping up this post, Stella's latest illness hit and we ask for prayers while she fights this virus in the hospital. We know she is strong and will pull through, but are grateful to have a team that can hook her up to monitors and keep my mommy heart at ease. And then we want her smiling, bursting with joy and HOME as soon as possible.

Thanks for checking on us, praying for us, and loving us with your FULL hearts!

The Stacy Family

Life Lately

Oh hey! Did you miss us? Probably not. No news is good news around here but Stella wanted to check in and let you know how great life has been lately. 

Since her G-tube surgery, Stella has started to eat REAL FOOD! Like baby food a normal baby eats. Off a spoon. Without a tube. It's awesome. Here she is with a messy food face post pears and a teething cracker. 

She eats three meals a day, sleeps thru the night and is just the sweetest baby ever (just don't try to give her a bottle!)

Stella also joined us for our first vacation as a family of five! Izzy and Bubby took us all to Florida and we had the best darn time. She didn't swim because mommy was super neurotic about her G-button, but she took a lot of strolls and was a total rock star during the 14 hour drive each way. 

Some beach moments: 

Front Porch Sittin'

Florida looks good on us?

Let me in the pool, mom!

All in all, life is just getting good around here. The twins are warming up to Stella more and more every day. They are terrific paci-fetchers, and have been trying their luck at diaper changes. Maybe they should work on their own potty training first?

We celebrated my favorite holiday with a little pool time and lots of patriotic attire. Stella needs to work on pacing herself :)

Thanks for checking in! xoxo

G Button Baby!

Yesterday Stella was admitted back at Children's Hospital and underwent minor surgery to have a G tube placed in her stomach. The procedure was a success and she now has a button on her tummy where we will be inserting her feeds. This means no more NG tube in her nose and down her throat, and no more tape on her face holding the tube in place. No more stressing about Stella ripping the tube out 4 times a week. And no more worrying every time I replace the tube that it goes her lungs instead of her stomach. Basically - WOOHOO. 

All that being said, I think we were all so excited to get the G tube we didn't realize how big the button on her stomach actually is. I'll spare you the pictures, but the reality is she still has a hole cut thru her skin, muscles and stomach to have the device sewn in place. Ironically the button is called a "mic-key" ... It's not quite that cute. Here's hoping we adjust to her new tools quickly and she tolerates this new form of feeding. 

After surgery Stella had to wait 24 hours before using the tube, so we were finally able to resume feeding her this morning, thank goodness. Imagine the last time you had to go 30 hours without eating - girl was hangry. We are slowly working her back up to full feeds and are hoping to get discharged tomorrow. Stella will begin aggressively working with speech therapy to try taking foods by mouth and fingers crossed now that the tube is out of her throat she will be more comfortable and open to eating. 

All in all things are looking up! We are so proud of our warrior for handling another hospital visit like a champ! Thank you for all your prayers and encouragement. And here's to hoping tonight is our last night in the hospital for a VERY LONG TIME! 

Ready to roll in pre-op!

First feed with no NG tube! I

Happy Days

I apologize for the lack of posts. Stella is doing SO well and I hate that I haven't shared her good news with any of our friends and family that rely on the blog for information.

After we left the hospital post the Glenn we had some bad days and a few more GI issues. Stella was basically throwing up again all the time, had to go back on more meds (which upset her stomach and we hated) and was just not herself. She was fussy, vommited without warning, wasn't sleeping, and we were at our wits ends.

We took it upon ourselves to meet with a new doctor in the GI department and we love her. Among other recommendations, she advised us to take Stella off her special formula (which smells like death) and put her back on normal Enfamil. Its been almost 2 weeks since then and Stella hasn't thrown up one time. NOT ONCE. She can play on a play mate and be flat. She is sleeping in a crib like a normal baby. We can pick her up after she eats and not wince waiting for her to barf all over us. It has been Life. Changing.

And on top of all that, I decided to go for it and sleep train little miss in her crib. 4 days later, she sleeps through the night until 7 am. I never imagined we would be scheduled so quickly, but am a firm believer that God only gives us as much as we can handle. No middle of the night feeds and I'm a new woman. 

So - next steps:

Stella still refuses to take anything by mouth - especially the bottle. She is scheduled for a G-tube on June 6th and we are all excited to get the NG tube out of her throat and off her adorable face. After this surgery, she should enjoy life away from the hospital for quite some time. As much as we love our Children's family, we won't miss them too much :) We even have a vacation to Florida planned for the end of June! 

I will try to keep updates here because we love bragging about our precious baby and see the blog as a way to thank everyone that has continued to follow her progress and love on us all. Thank you from the bottom of our hearts for every text/email/comment/gift/meal ... we couldn't have done any of this without your generous and loving hearts. It has been quite the journey and Stella has changed us for the better. For those of you who have been hesitant to reach out and and visit - now is the time! She is so fun and we welcome playmates. And for those of you still waiting for a thank you note - it's coming. We are beyond appreciative for every gift, big or little, and meal. I would never want anyone to think we've taken our help for granted. 

And without further adieu ... a few pics before I go 

Pretty big fan of the play mat! 

Not impressed with much else

Crazy mommy took us ALL to target. I think she bought a lot of wine? 

Annie the Nanny loves to come visit

All in all. Life is GOOD

Home!

This post is about 5 days late, but it was brought to my attention that I never confirmed Stella is HOME!

We were discharged Tuesday, as planned, and have been soaking up every minute with this cutie back under our roof. She has done great at home and is only on Tylenol for pain (super baby!) We are so proud of our little one and grateful that long stays in the hospital are a thing of the past (for now). Go Stella!

Stella Strong

Over the past week we have been told time and time again how tough our Stella is. We were reminded that if we had undergone the same surgery as adults, we would probably still be sedated a week later. Stella finds this hilarious. 

Hey guys - you just cracked my chest open last week. Can I go home now?

Stella blows my mind. She is so happy and (I'm biased) the most popular baby on the 7th floor. She charms every nurse she meets and has a way of ignoring the Attendings, proving she is in charge/knows what's up. I pity her first boyfriend. 

We are very hopeful that we are taking her home tomorrow! It's still up to the aforementioned ☝🏻️ Attending, but she has checked every box and constantly shown just how tough and resilient she is. 

Assuming we bust her out of here tomorrow, life will look much different than before the Glenn. No more weighing her at 8 am, checking her 02 saturations and calling into the nurses line to report her stats. She can leave the house (whoohoo!) and even meet her cousins face to face. All in all, her quality of life is about to increase exponentially and we are all breathing a huge sigh of relief and praising God for delivering her through the interstage period into a pattern of rest and growth. 

We will probably never stop saying thank you for your prayers and support of our little family throughout all of this. We aren't finished and will likely call on you again sooner than planned to pray and lift sweet Stella up. Until then we hope the blog will be a place to find joy as we update her progress and victory in the initial stages of a lifelong journey dealing with her congenital heart defect. HLHS is an acronym that was foreign to me 8 months ago, and has changed all of our lives forever. 

I am still waiting for God to show me why it was necessary for Stella to endure this kind of pain in the first 4 months of her life. I get angry, anxious, and doubtful - a reminder that I too am in need of saving. To think that we are on this path for a lifetime makes me feel defeated and long for our eternal homecoming where pain is impossible and faith is rewarded. Until then I pray (not nearly enough) and await the day when Jesus will fix all our broken hearts. 

Moving on up!

Stella is out of the ICU! We moved to "the floor" this morning (which is actually just 50 yards down the hall) and are enjoying life with less wires, machines, and overall stress.

She has responded well to the respiratory treatments over the past 24 hours and her lung X-ray looked much clearer this morning. Additionally, her blood cultures for infection came back negative so we've stopped antibiotics. Stella is also starting back on a feeding schedule (instead of continues feeds) and is off the medicine for her gallbladder that (ironically) upsets her stomach. 

All in all, I'd call this a darn good day. 

4 months old!

Our little heart warrior is 4 months old today! 

Today was a pretty good day.  Although she has a partially collapsed lung with fluid on it, preliminary xrays make us believe that they can  successfuly treat it without aggressive respiratory treatments that would irritate her.  Stella is off all continuous IV medications and morphine. The tylenol and oxy combination seem to be warding off the pain. Its nice to see here eyes open without them being glassy and pinpoint pupils.

The chest tubes were removed and she is so much more comfortable.  Stella is slowly starting to look around, smile, laugh and stick her tongue out at us again, which makes us happier than words can describe. If things go well we will get pushed down the hall to the floor side of the CICU tomorrow!

I'm sure there is more that Kate wanted me to cover and that we talked about...but I'm going to try to get some sleep before respiratory shows up at 2:30 am for her next session.

Pre-surgery Photo cred goes to @ameliahearne