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..

Good news

It took a lot of smart folks and some head scratching to get to the bottom of it but we finally have a diagnosis!  Stella has a partial blockage of her common bile duct.  This was causing some issues with her liver, which caused issues with her blood, which all ended with her throwing up (and slowly turning ever so slightly yellow). 

Our little girl continues to prove that she's special. So special in fact that our cardiologist had never seen this before. Treatment options are still being determined but it is not something that requires surgery or a lengthy hospital stay!

So, where are we now - Stella is still on track for her cardiac catherization on Monday. We will know on Wednesday whether this impacts the timing of the Glenn procedure. We are hopeful that her next surgery proceeds as planned but know that decision is out of our hands. 

Admitted

We were so close to making it through the interstage period without being re-admitted! SO CLOSE! But alas, we are back at Children's Hospital. 

Stella has been vommiting for about a week now. At first we attributed it to just being a newborn, and then wondered if it was an increase in the amount of formula she is getting. Her cardiologist assured us her heart looked fine last week and even though she doesn't have any other symptoms, figured it was a virus. 

But today, one week later and a little more weight loss than anyone is comfortable with, Stella has been admitted for tests and observation. Am I glad to spend the night back on the 7th floor? Not especially. But I am relieved to have the very best medical team with us so we can get some answers. 

We welcome your prayers! Pray our stay is a short one. Pray she doesn't have anything that would delay her Cath or upcoming surgery. Pray her heart function isn't deteriorating. And pray for the sweet twins at home who miss Mommy and Daddy when we are away. 

We will update here as we learn more!

Next Steps

It's hard to believe our little Stella is almost 3 months old. As quiet as the blog has been lately, I can assure you, our house is NOT. As of Sunday, we also have two 2 year olds - cue the chaos!

The twins have figured out that their baby sister is here to stay and it's been fun watching them grow every so slightly attached to her. They've also become attached to her stuff. The odds of Stella ever getting to sit in her own bouncy seat or bumbo are slim. But Ellie does an excellent job taking care of her babies like Mommy, and Connor does an excellent job making noise and ensuring no one sleeps soundly :)

Meanwhile, Stella is doing great! Every other week we visit the cardiologist for a check up and her doctors are thrilled with her weight gain and oxygen saturations. As she approaches her three month birthday it's time to start preparing for the next open heart surgery (the Glenn). Ahead of the Glenn Stella will have another echo, EKG and then a Cath to determine that she is indeed ready for the surgery. As of now the Cath is scheduled for March 28, and then the Glenn on April 12th. We are told the average hospital stay for a Glenn is about one week - barring any complications. We pray Stella's recovery will be as remarkable as it was after the Norwood and she will be back home in no time.

Once her second surgery is complete, we can all sigh a breath of relief. The "interstage" period will officially be over and Stella can be treated more like a normal baby. No more weighing her every morning or checking her O2, and no more freaking out every time she sneezes or sweats more than usual. We can try and live like a typical family, take her places, and say goodbye to the doctors for a while. Will I still spaz out about her all the time? YES. There is always a chance she could get sick or her heart could deteriorate. We will pray that she remains healthy and her body continues to handle a single ventricle heart, but recognize that we might not be that lucky. If all goes according to plan, after April Stella won't need another surgery until she is 2 or 3 years old. So have I wrapped my head around another open heart surgery? Nope. But am I ready to have it behind us? YES!

And we remain very hopeful that after the Glenn, Stella will take a bottle! Feeding is the only area she has failed to progress and while it has been frustrating, it isn't the end of the world. For whatever reason, bottle feeding makes her uncomfortable and she now gets visibly agitated when we try to get her to eat. I wouldn't say I've given up, but I try less and less and am just grateful that we have the option to feed her with the NG tube. We are told that she should "come alive" after the next surgery and that is when most HLHS babies are able to be completely bottle fed. FINGERS CROSSED and prayers are welcome!

So that's what is on the docket around here! In the meantime we'll continue to add more rolls to our little chunk of lovin. As always, some recent pics of the chaos. 

In Love with Baby Wearing ;)

Queen of Hearts!

Ellie Loves Her Morning Milk in the Bumbo

Happy Birthday, Connor and Ellie!

Rolls on Rolls - Clearly Not Starving 

Hi!

Mommy and daddy have been super busy keeping up with my brother and sister, so I thought I would take over real quick and say HI!!!!  I got to see my favorite cardiologist today and she said I was doing great and on track for my next surgery.

See ya soon,
Stella

Seven Weeks!

Stella is seven and a half weeks old! Every day we fall more in love with our little chunk of lovin. She is over 10 pounds and has continued her impressive progress at home. I've sat down to update the blog a dozen times and never finished (thanks, kids) but we appreciate the requests for updates! It feels good to be in a routine and not feel the need to post daily - a little cruise control never hurt anyone. But thank you for caring, checking in, and continuing to pray for us all! (And for everyone that has brought us food - thank you, thank you, thank you. We are unbelievably blessed).

Stella's heart is stable (or as stable as a 7 week old with half a heart can be). We have had a couple follow up appointments with the cardiologist, including one this week. We spent Tuesday morning at Children's Hospital after almost week of noticing Stella's O2 saturation had been a little lower than normal. Her doctors want her to hover around 80 (ideally between 75-85) and she had dropped to the low 70s and occasional high 60s the past few days. Thankfully, an echo revealed that absolutely nothing is out of the ordinary and we are going to attribute the low sats to fussiness or perhaps a bad sensor on the machine at home.

Stella's heart looks good. There is mild leakage in both her valves - but as long as that remains mild, her doctors are pleased! She gets a gold star for growth (hello thigh rolls) and is super alert. Basically, she rocks.

We still haven't made any progress in bottle feeding - our girl just won't have it. She tolerates the feeding tube and still gets all her milk through the tube which is a blessing, but I'd love to lose the tape on her face and gagging the tube causes her. The other morning she spit up and gagged so hard the tube came flying out of her nose - it was traumatic for both of us. We met with her speech therapist this week and learned some new tricks so fingers crossed she will give the bottle a try.

Connor and Ellie have become superior older siblings. Ellie finally acknowledges Stella (most of the time) and brings her pacis and blankets and wants to mother her as aggressively as I will allow :) Connor pushes the limits of being a big brother - but clearly adores her and I can't wait until the three amigos are running around like triplets.

We are so thankful for very few setbacks and lots of family time at home. Life with these three will never ever be dull, but I can't imagine it any other way!

Some more highlights from the Stacy 3 :)

The first car ride with all three kids - Lizard and I were bored and they were so stir crazy we just drove around and enjoyed leaving the house! And yes, Connor has a black eye. Oopsie. 

Stinker has pulled out her NG tube often this week - but I love her tube free face!

Our sweet neighbor lent us their bounce house to amuse the twins while they are stuck at home. No broken bones yet!

Baby girl has some cheeks! Giving Bubba a run for his money :)