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.

Tomorrow!

Tomorrow (April 12) is Stella's second open heart surgery - the Glenn. The surgeons will also place a stent in her left pulmonary artery. She is the first case in the morning, beginning around 7:30 am and she is expected to be done around 1 pm!

One of us will keep the blog updated all day long. We thank you in advance for your prayers! Stella has had a few "good days" and we are ready to have this milestone behind us.

Psalm 13:5-6 - But I have trusted in your unfailing love; my HEART shall rejoice in your salvation. I will sing the Lord's praise, for He has been good to me. 

HOME

After a long day of debating, labs, increased oxygen sats, decreased oxygen sats, and a last minute blood transfusion, we finally convinced the medical team to let us bring Stella home tonight!! 

We are so thrilled to have little Miss back under our roof. It appears as though her

GI issue is lessening as the new meds and formula take affect - and after much discussion - Stella got more blood today which instantly made her pinker and brought her back to life. She was finally able to come off oxygen around 2pm and  our only concern remains a fairly large hematoma where they inserted her Cath. It seems like it makes her pretty uncomfortable so we will push Tylenol and pray for quick healing. 

I've struggled to understand why Stella had to endure this setback so soon before her Glenn. Why she couldn't catch a break this week. Why her new formula smells so bad (I'm not kidding). 

We joked about spending yet another holiday in the hospital, but it was a real reminder of the hope we have knowing one day Stella's heart will be made whole again. It's hard to comprehend that Christ loves her so much more than we do, but what a victory to put our trust in the One who sacrificed everything to save us! God is faithful and so so good. 

Welcome home, Stella! 

Not bad news...

Today was Stella's cardiac cath, which would give CT surgery the info they need to plan for a successful Glenn on 4/12.  Since she was an in-patient (due to the vomiting) we were hoping for a less hectic day.  The cath team got started about an hour and a half early, which is a good thing to get it over with but not so great when the twins favorite playmate wasn't going to be at our house that early!

The cath went well and they encountered no real difficulties during the procedure.  We knew going in that the cardiology team believed Stella had developed "normal" (for her condition) connections into her pulmonary artery and that was causing the elevated oxygen saturation levels.  They closed these off during the procedure, because otherwise there is an issue with blood flow management after the Glenn.

When they were finishing up, the cardiologist who does most of these types of procedures came to chat.   It seems that in addition to what they were expecting, they also learned that Stella has a pressure imbalance in her aorta due to multiple kinks.  Right now the imbalance is small, so it just gets dropped in the bucket of things to keep an eye on as it could become an issue down the line.  That bucket really needs to stop filling up.

The less than good news was that Stella also has narrowing of one of her pulmonary arteries and they have do to something about it during the Glenn.  They will try to open it up with a stint (similar to what they do in folks with heart issues who are about 60 years older than her) but if that doesn't work, Dr. E is going to have to work his magic again, as the surgical repair is "complex" due to the anatomical position of the structures.  I can't even rap my head around what is complex given what Stella has already been through and is getting ready for on 4/12.  All in all, it could have been worse but it certainly could have been better.

About 3 hours (+/-) after they started, we were allowed to see our baby girl in recovery.  Stella decided to continue proving how special she is and developed a rapid onset fever, accompanied by a dropping oxygen saturation level and rapid respiration.  This is one of those items that gets explained after the fact as being a "known risks", to be promptly followed followed up by everyone either telling you that they have never seen it or it was super rare.  Our 15 minutes stay in recovery turned into about 5 hours.

Stella is back to the CICU floor.  She developed a hematoma but, as of now, the fever is under control and her respiratory rate seems to have stabilized.  Stella's hemoglobin also dropped by about 33% but fortunately we had a little cushion, so no blood transfusion...yet.  There was talk of giving her extra special attention and moving us to the ICU part of the CICU but it seems that is on hold for now.  They will continue to closely monitor her overnight and there is still a chance the Stacy clan can all be back together tomorrow night.  We are ready for our baby girl to come home, even if it means she comes home on more medications, her feeding time will now by 90 minutes instead of 30 (still vomiting) and oxygen gets added to the growing collection of medical equipment in our house.  

Oh yeah, because enough hadn't already happened today, as we were in recovery we learned that Stella had to be moved and she would now have a roommate.  The floor isn't that full, it is just that all the kids have viruses and are in isolation so the families (like us) that have children that are still super sick but just don't have viruses get to bunk up.

I'm sure I have left a few things out.  Today was a sobering reminder of how quickly things can turn, how much support we have from friends and family and that two weeks from tomorrow our little girl has to, yet again, be stronger than I ever will be..