day 6 brought some sunshine. the art line came out today and we were able to take our little one for her first walk since surgery. it was nice to have this little bit of normal. a little more freedom. we packed up her chest drain catcher thing [official name] and headed out to the 'deck'. it's so wonderful they have this little outdoor space for the kids and we soaked up our vitamin d. there is a narrow stiff couch in the room, which is where i slept. the night before i had planned to sleep in the room also, but headed upstairs to the ronald mcdonald house after her heart rate alarm went off for the 4th time in 2 hours. i fed her at 1am & asked the nurse to call me when she woke up. she usually sleeps through the night at home, but with the constant checks and prods throughout the night, she was up & ready to eat again at 5:45am. i was happy to get 4 hours of straight sleep and i have i mentioned how totally amazing the ronald mcdonald house is?! make sure you put your dollars in the little boxes at the mcdonalds drive thru. we have made much progress and her goals now are for her chest drainage to slow enough they can remove the tube and they are still working on getting her calcium levels where they should be
day 7 was a roller coaster day. i woke up with a very stiff neck from the lovely little blue couch. they needed to draw blood to check her calcium. previously they had been getting her blood from the art line, which was now out. they tried to draw from her central line, but had no luck. they decided to take the central line out [of her neck] and hoped to get some blood when they pulled it out. no such luck. [this was very painful to watch and lots of screaming was involved...not a nice start to the day.] her poor little neck was raw from all the tape that had been holding the line in. they also mentioned that her mt drainage was up from they day before. this was extremely frustrating to hear as this meant the drainage tube would be in for a few more days and that would put us here over the weekend. we had still been holding onto hope that we'd be home friday. i promptly texted j [he had been moved from the ronald mcdonald house upstairs to the one down the street, so he was now a 15 minute walk away rather than a flight of stairs.] this was an overwhelming morning and i needed some support. i am so blessed to have this man in my life. he was here within minutes with a cup of jamaican me crazy coffee in hand. my rock. after two attempts they finally got the blood needed from her foot. more screaming & crying involved. it's such a horribly frustrating thing to watch your baby uncomfortable and in pain, day after day. for awhile i would have to keep reminding myself that baby girl just had surgery a few days ago. she was like a little zombie and i could not get a smile out of her. i would get nervous that something was wrong and i'd never have my happy smiley baby girl back. however on day 7 after the surgery, our day got much brighter. we got our first real smiles since surgery! so, so good to see that sweet smile again. a smile that brings joy to my soul.
thank you, thank you for your continued prayers and loving comments. it's always so wonderful to read your encouraging words and i often read posts out loud to j. we appreciate you.