Some pics of our weekend sleepover:
I am very happy how the kids are, well maybe besides Sophia. She is jealous and acting up, but I'm sure it will pass. Gina, Julia, and Anastasia are being great about the hand washing and sanitizer. I don't even have to remind them to change their clothes when they come home from school, they get right to it! The first 2 days home were definitely the easiest because Karl was here and could hold the baby while I got her meds ready, washed syringes, etc. When it is time for her morning meds is also when AJ and Sophia want breakfast, and Karl is usually rushing to get ready for work. I am so happy that she feels safe with us. Everyday she gets: vitamin 1x, Aspirin 1x, Lovenox injection 2x, Enalapril 2x, Digoxin 2x, Lasix 3x, Safflower Oil (for calories) 2x, Prevacid 1x, and Spironolactone 2x. She drinks her formula special made to be 27 calories. Sometimes she passes out a quarter through her bottle, other times she wretches and if you push her she will vomit. But more so lately she will drink most of her feed orally, and sometimes the whole feed! We will be seeing her Cardiologist and the Cardiology NP every week at the hospital. This visit Cecilia had an echo, but she will not need to every week. She also had to get her blood drawn to measure her Lovenox level, and it was perfect so we will not need to do that again for another month! Lovenox is a blood thinner we inject into her thighs 2x a day to hopefully break up a blood clot that is her Deep Vein Thrombosis of the left femoral artery. All of her other medications are painless and are given through her g-tube. I am really getting the hang of the shot, I have been able to give it to her without her waking up almost each time! Thursday our home nurse came and she was great. Sophia adored her! We will not have the same nurse next week because the one we were supposed to have was sick. The nurse just checked through my supplies to see if I need anything, and if I do she orders it, and then she does some vitals on Cecilia to make sure she is stable.
Sunday, my step daughter Madison will be coming over to meet Cecilia for the first time! ♥ We don't get to see Maddie that often, so I just know this will be a really great day. Monday Cecilia will have her first check up with her Pediatrician. Wednesday is always Cardiology day, and Thursday is home nursing. This Thursday a social worker will also be coming over.
Well, thank you everyone for your prayers for Cecilia. In a few days, one of her heart friends from St. Louis is going in for the Glenn. Sweet baby Kate and Cecilia had their Norwoods a day apart. Kate's recovery has been such a hard one, but she is still fighting and looking damn cute doing it! She has been on ECMO twice, multiple codes, seizures, and more. My heart and mind will be with this family and praying for a great surgery so Kate will finally be less fragile and can go home with her loving family. It will mean a lot to me if Cecilia's supporters pray for our friend. ♥ Thank You
Now, here is some HOME pics...
Sophia is very proud of her new wall mural of marker scribbles. Mommy, not so much.
One of these is formula, one is just water to flush the g-tube. I notice if I give her a little bit of formula before the meds, she doesnt vomit them back up.
Helpful go-to sheet ;)