A Good Friday!

Three years ago today Stella had her 2nd open heart surgery. It’s crazy to think back to that spunky 4 month old we barely knew but already loved so much. In honor of this milestone Stella decided to celebrate today by transferring out of the ICU! As of later this afternoon she will officially be a Pediatric Cardiology patient. 4 DAYS after open heart surgery. Y’all sure know how to pray. 

Picking up from my last post: 

The remainder of the day yesterday Stella spent a pretty decent chunk of time on Adam’s lap while I ran home to shower (also worth celebrating) and brought the twins to see their sister. They were both super sweet - Ellie had a dozen questions about every tube and wire, while Connor just wanted to know if she was ok before tossing her a dinosaur and raiding her candy stash. 

After they left Stella was exhausted so we let her sleep for a long, long time. Right before Adam was about to head out for the night she woke up in severe pain and once again we had to manage the pain quickly and work to calm her little body. It doesn’t get easier watching her suffer! Shortly after she had calmed down for the evening we noticed she had developed an impressive rash all over her torso and was itching and rubbing her face frantically. The jury is still out on what caused it, but the two popular diagnosis’s were: a reaction to being given so much morphine and/or a skin reaction from being wiped with chlorhexidine wipes so many times after she continued to throw up all day. On top of that, her blood pressure spiked and it was stressful watching her fidget as she was clearly uncomfortable. She eventually calmed down late last night and slept pretty well until 5 am. (One of us will come out of this hospital admission pinker than ever, and the other with the darkest eye circles you’ve ever seen). 

But today when Stella woke up it’s like she knew Mommy needed a W. She is doing great. On rounds the surgical team decided they would pull both her remaining chest tubes and finally remove her arterial line! She began eating small bites of food (gummy bears and roasted almonds = breakfast of champions). And she has been sitting up playing and smiling. 

After prepping her and taking a closer look the surgical team went back and forth and decided against taking out her left chest tube, but they did remove the right side! Stella perked up so much I can’t imagine how good she is going to feel when the third one comes out! They also reminded me it would have been incrediblely rare for her to have all 3 chest tubes removed that quickly and it is still incredibly fast to have 2 out in 4 days. I tried to act surprised. 😉

Right now her team thinks the third tube should be ready to come out tomorrow. Nothing is a sure thing in CHD land, but it’s looking good. If not she is managing the pain and moving around much better with just the 1 tube. She needs to start eating a little more than gummy bears and we are going to work on getting her in and out of bed and maybe even walking. Just checking box after box until we talk about going home next week! 

Sweet girl. She asks “will you take me home now?” all the time. But when I explain why we can’t leave quite yet she takes it in stride. Stella suffers so much, fights so hard and complains so little. I am sitting here in awe of her attitude. Aside from the obvious physical pain, she is just so dang upbeat. She’s funny for sure - today she grabbed a stethoscope and listened to one of the Cardiology Fellow’s hearts and told him it sounded like it was laughing “because I made it happy”. I can’t get over this kid sometimes. I spent so many days and weeks leading up to surgery crying and digging into my faith to get through this week and it it just comes by her naturally. 

We will keep posting updates and also add back in some instastories now that every update isn’t serious, scary or emotionally draining. (Sidenote - can you guys believe I went all this time without Instagram?! Two miracles in one week). I love you all to pieces!

Pictured below:1. Stella listening to the Cardiology Fellow’s Heart; 2. Resting before her second chest tube came out; 3. Partying after her second chest tube came out; 4. She gone