Monday, December 31, 2012
December 31st- Day 5
Yesterday started pretty uneventfully. Riley had a good night,no seizures. She has started getting formula through a feeding tube at the rate of 30 ml/hr which is equivalent to half of one of the ready feed bottles they give you when your baby is born and you're formula feeding.
I typically, go home at night to see Mason/Logan. When I got back to the hospital yesterday I brought some bows and girly socks. We're getting tired of people calling Riley he. They removed all of electrodes monitoring her brain as there hadn't been seizure activity. The best part of the morning was helping wash Riley's hair to remove all of the glue they used for the electrodes and brushing her hair. She now has a pink bow that adorns her beautiful head.
We're still waiting for swelling to subside but, good thing is there hasn't been an increase.
Dave left the room to grab some lunch yesterday and I spent some alone time with Riley. It was nice to talk to my daughter without any outside distractions and let her know how much I love her and want her to fight as much as she can. I just look at her beautiful pictures and know she has a full life ahead of her doing something purposeful here in her lifetime.
While I was with Riley I noticed her lips moving and then her right hand started a twitch. I called the nurse and of course she's off the eeg so while they won't call it a seizure all signs point to it being one.
Riley also had her first blood transfusion. She's B+. That went well and her body seemed to tolerate the new blood. The transfusion was done to work with the heparin as she's now been on it for 3 days and the hematology team believes the transfusion will help her levels. She's also only 10 months old and they've taken tons of her blood and the remaining is trying to fight the infection.
Due to being on the heparin she also has an u/s of her spleen. Late yesterday afternoon we were also told she'd be getting another CT. We didn't leave the room until 9pm and we were exhausted! Our fabulous nurse knew Dave was waiting for the results to go home and get some sleep so she pushed for the doctors to read the scan. Preliminarily, there were no changes, no bleeds, no clots. This is good news.
Overnight, Riley rested. I stayed here for the first time and tried to get some rest. Early this morning Riley's hr started jumping all over the place. Our nurse believes it to be a sign she's feeling more pain and she was given some medication. Riley has also had more saliva, boogers, movement and finally pooped!
All in all I'm tired of having to be patient but, I'm trying. Dave and I realize that she's resting but, she is also in a self induced coma. The longer she stays this way it's not good. We really need Riley to "wake up" and believe me we all miss her pretty blue eyes!
Riley is very very sick. Her infection is bad. It's now Riley's little bodies time to work on healing. Her long term prognosis is unknown. What we're doing now is staying faithful and putting everything we can in to getting our baby better. ***Rounds this AM show much the same as yesterday although, Riley has pooped twice, gagged/coughed and had reflexes to pinches by the head of the PICU (Dr. Anas- sidenote I LOVE him for many reasons) in her feet. She is ever so slightly sedated but, the majority of her coma is on her own. ****
So as 2012 ends we remain hopeful that 2013 will be her year as cliché as that sounds.
I'll leave with some pictures.
We had very special visitors today my bff Erica, Dave's mom Marie, Dave's brothers, Dave's Dad Rudy and step mom Beverly and my mom and dad. We also had visits from two family friends who have always felt more like aunt/uncles to me.
First, Debbie and Jerry who mean the world to our family. Debbie brought holy water from the River Jordan and blessed Riley. She also brought Riley a beanie baby monkey that was grandma Eggleston's favorite.
Then, I looked up and Ron and Chris were at the door. Again, family friends who mean the world to us. Chris brought Riley a picture of the patron saint of children and a healing cross.
These visits and gifts mean the world to us.
We also received a care package from the Drudge/Eilers/Thomas families that contained everything we needed for Riley's room from advil, water, granola bars, cookies and an adorable picture that the beautiful Eilers kids drew for Riley.
Again, we are humbled and overwhelmed by all of your love and support. Please pray that Riley's little body is ready to wake up and begin to heal. We need our baby. There is no other option.
Love and to a better 2013,
Dave, Megan, Logan, Mason and our little fighter Riley