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

The past couple days

Kate and I have both meant to post a detailed update for the past two days. But the days fly by and we just haven't had time to put the level of detail that we would like into a post. I think we both have either forgotten or shut out how exhausting it is here and we are not the ones who underwent open heart surgery at 3 1/2 months old.

The short version is that Stella has been doing well. She's in a lot of pain and had a couple very long nights.

Today, they were able to pull out the pacemaker wires and the atrial line. She is still heavily sedated with opioids and will likely be fighting a battle with withdrawl, but that is the only way she has been able to get through these past few days. We are fighting one battle at a time.  We're hopeful that her chest tubes will be removed tomorrow and that she will be moved to the floor side of the CICU soon.

We both got to hold our little girl for the first time since Tuesday.  We can't imagine what she is going through and she continues to amaze us with her strength. 

(This is Kate taking over a few hours later - proving Adams point that it's impossible to even finish a thought in this place, let alone a blog post!) 

Our biggest concern and prayer request is that she wards off infection (after more than 24 hours with a low grade fever she is on an infection protocol and will proactively receive antibiotics for 48 hours). We also hope to manage her pain consistently and ween her off morphine in the coming days. Holding her is soothing but also incredibly stressful for us both with all the wires and two large tubes protruding from her tiny chest. We pray those will come out tomorrow and we will all feel more comfortable snuggling our sweet doll baby. 

We will try and be better about updating the blog for the remainder of our stay. As always we are overwhelmed and incredibly grateful for all your love and prayer. 

A friend sent me this verse on Tuesday and it has been a powerful reminder of how fleeting this earthly pain is in comparison to an eternity with Jesus. I pray Stella grows up to love Him and know He suffered on this earth like she has in order to ultimately save her and make her whole! 

“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 

The Glenn - progress updates

4:45 pm - baby girl is resting in the CICU and we are with her.  She has pretty bad headaches, on top of the surgery pain, but that is expected because of the changes to the way blood flows in her body. A great team is working to keep her as comfortable as possible until her body can adapt.  They were able to get her off the ventilator after surgery!  We can't thank everyone enough for keeping Stella in your prayers.  Hopefully, this is the final post today.

3:00 pm - Stella is out of the OR and in the CICU.  We are waiting to see her!!!

1:00 pm - Our little heart warrior is off ECMO and they are beginning the slow process of watching for leakage and then closing her back up.  They were able to place the PA stint and did not have to do a reconstruction.  It sounds like the Glenn also went as expected.  Hopefully, in a couple hours we can see our girl again.

11:15 am - Stella is tolerating everything well. She has a lot of scar tissue that they are still cuttting through and have not started the actual procedure yet.

9:15 am - It takes a while to run the lines to get her ready to be on bypass. They are done with that portion and are prepping her chest.  The actual surgery will start soon.