(from 12:15 am before I left to go try and sleep) Ruby did much better sleeping Wednesday night. They seemed to finally be in control of her pain and itching. Such a huge difference! Dillon went home to sleep that night and did some work at home. When I left Wednesday night to go to the room and sleep for a couple hours (so I thought), I told the nurse to wake me up when she was awake. I woke up at 6:00 am—after having slept for about 6 hours! I rushed back to the room, worried that the nurse had forgotten that I needed to nurse her. Ruby was asleep and the nurse came to the room and said, “Believe it or not, but she slept the whole night!” Before I got there the nurse said the x-ray guy came to take her for her daily x-ray (so of course she woke up for that). She said the guy is a really large African American man and they were laughing because Ruby just stared and stared at him. The nurse said, “It’s almost like she was thinking, ‘I didn’t know they came that color!” So funny. She wasn’t being rude—she obviously really loved the man who came to get her. :) She wasn’t feeling very well when she woke up at about 6:30 am. I fed her and held her, and shortly after that she threw up everything she just ate—she threw up so much! She was pretty lethargic and didn’t want to do anything, just be held and be still. She had no interest in eating anymore. I walked through the CICU that morning and came back to my phone and noted: “These babies are amazing! Brings tears to my eyes walking through the CICU.” It’s so true—such beautiful little souls fighting for their lives, along with their amazing parents. The doctor came in that morning also and said she’d potentially come home on Sunday! He said the chest tube would stay in for now because she still had lots of drainage but that it was looking more clear and thin so that was good. She had a bunch of junk in her throat, so the nurse was thinking maybe she was coming down with something. She hadn’t had her oral pain medicine yet and so they didn’t think the medicine was making her sick. But of course myself just being on pain meds (through IV), I know how crumby you can feel with the different meds so I’m sure that was what it was. The nurse was just a little worried because she was more tired than she should have been since they weren’t giving her anything anymore that would make her sleepy. Other than that they were pleased with how well she was doing. 10:45 am—you can see how much less red she was! So happy she wasn’t so itchy. She still was but nothing like the day before. At 11:00, she was throwing up again, and this time it was all the pain medicine she was just given. I wrote: “My poor Ruby. I’m holding you now and you are sick. You keep throwing up. But I’m sitting here listening to Sarah McLachlan Christmas and holding you…you are an angel. This is such a sacred moment with you. I love you so much!” The nurse decided to call in the doctors because they didn’t know why she was throwing up. Ruby was sad and just wanted to snuggle with me. 11:45 am. Her bandages had been changed and the wires were all contained in these tubes. 1:40 pm. I wish this next one wasn’t blurry, because it’s nearly a smile! At 2:15 pm they gave her some zofran for nausea and pain meds through her IV since she kept throwing up. They took out her pacing wires and arterial line—all of which were held with a stitch. The arterial line was stitched down to/in her hand. They were impressed she didn’t fuss much. They were impressed yesterday with her as well when one of her IV’s went bad and they gave her another one—she barely fussed. It was like she was thinking, “I’ve had worse.” :) The medicine seemed to help her feel better and she was just tired and nursing. And, she didn’t throw up after that feeding so that was wonderful! My mom came about 3:00 pm again to give me a break so I could go eat. Ruby was so cute and just stared at her the whole time my mom held her :). So sweet.At about 4:00 pm she was pretty awake and seemed bored. The nurse tried the TV but that didn’t do anything for her:). So she got one of the toy things from the PICU and Ruby played for about 10 minutes really great—kicking and very curious. So cute and so wonderful to see her wanting to play again. Then she was done and really tired :).Dillon finally was able to come back at about 5:00 pm. She threw up again at 7:00pm. :( But then she ate again and seemed to feel ok. She was pretty darn close to smiling when Dillon got back. I wish this next one wasn’t blurry but I kept it because it’s like she’s looking at me saying, “He’s back momma!” At 8:30 pm we were moved up to the Cardiac Surgical Unit! Which was great. But honestly it’s also scary because you are no longer being watched so closely by a nurse! But that is also good because it prepares you for taking care of them at home without anyone’s help. The best news? She started to smile—for real! And talking and interacting. Lauren, who had been taking care of her the whole day (for 2 days), saw her smiling and even giggling at the new nurses on the CSU and said, “Well that’s rude, Ruby!” So funny. The nurses in the CSU were so loving it. They kept saying how she was so interactive with them and not grumpy like most of the babies are when they come up to their floor (which I don’t blame those babies one bit!). It made me SOOOOOO happy that she was happy! I wrote: “Makes this momma heart so happy! I still have my baby!!! I want to shout it from the rooftops!! My fear of losing her is over!!! I’m so so thankful!!!” Obviously it would be extremely insensitive to shout that from the rooftops, I’m not trying to be extremely inconsiderate, but I am just trying to explain to you the huge feeling of gratitude and relief that I felt. To be on the recovery floor, out of the thick of things, was just the most wonderful feeling!!! I had to snap a picture of Santa to send to my kiddos :) Dillon headed home to sleep and I slept on the couch in her room—after taking a much needed shower! That is a great thing about the CSU, you have your own room, it’s much quieter, and your own bathroom/shower. Plus a better bed to sleep in their room with them.
Originally posted on family blog in 2013.