A Little Lost but Always Found

So last night as I typed the update onto Facebook, I knew it should have been on here because of how lengthy it was. So today here we are. The first picture right below is of Lily, Facetiming her sister, who is currently in Nebraska. These two share secrets with each other, share a bed, and are thick as thieves together, they are truly missing one another right now. I have never been more glad that we live in a time where things like this are possible, so the separation is more barrable. Our whole family is divided right now and the strain is felt by all. What I'd give to have all the kids here, especially my husband, and my father, when she comes out of surgery. You never truly understand how much weight is on your shoulders, until they come out and tell you the surgery went well or not. That's when I walk outside and cry because I've held it in for so long.

Today was a pretty rough day. Ok scratch that, it was a rough day. We were supposed to get a CT Dye contrast, so they could get better images for Mondays surgery. Let me just tell you, Lily was so brave, and she was so good, we couldn't be once again, more proud of her, for her bravery. 

She took the first IV try like a champ, on her second try, you could see it wavering, because she was getting sweaty, and you could see it in her eyes, she was slipping. 

So when the second IV was a miss, she lost it. She just threw her arms down and said, "No, no, no, no. They have to do it again, no!" Tears and sweat running down her face.

So when it came to the third try and the vein blew, I audibly swore. I knew I shouldn't have, but I was struggling myself, to hold it together. So the last try was the side of the wrist and that one blew too. So the nurses looked at me and told me they were going to reach out to Cardiology and see what they wanted to do. That gave Chris and I time to snuggle and settle her down.

In the end, they told me to head over to Cardiology, I called and asked if all of us needed to come, or if I could go by myself. Thankfully it was just me, I sent Chris, with Lily, back over to the house, for lunch and a rest.

Our new action plan is in plan.

Lily will be undergoing a Cath on Monday, while being under, they will do

 Trans-esophageal echocardiogram

CT Dye Contrast

ENT will be checking her right bronchial tube to see how narrow it really is

A possible balloon of her arch, depending on if the sent have moved or what's going on

also known as Lily being Lily.

I feel there was more, but I can't think of anything else at this moment. Seeing tomorrow is Saturday, we will go and have her Covid swabbed again, and have the rest of this weekend free. Which at this moment in time, something we all really need.

Thank you to everyone for your kind words, messages, phone calls. I have had a few ask if we can receive things here at the Ronald McDonald House, and yes we can. You can reach out to me for the address and I will get it to you. We truly wouldn't be getting through all of this without the support of our friends, family, and our supporters. Just know, we thank you all in our thoughts and prayers daily.

-Jenna S

#BelieveinLily