Monday, December 31, 2012

Happy New Year and Thank You!

I'm home with my boys waiting for midnight which I don't think this mama will be able to make it to.

We want to thank all of you for your love and support. I just glanced at our blog hits and literally there are people all over the world reading about my sweet girl! Amazing and overwhelming.

I came home because even though I didn't want to, I know I needed to. Riley's brother Logan turned 4 in October. He is a sweet, sensitive boy who spent the last 3 days with his favorite cousin (sorry Cameron, Drew, Gage, KD, Peyton and Molly- I promise he adores you all too!) and he needed some reassurance.

I finally understood the difficulty Dave had with coming home. I think once you get in a fighting mindset behind one child it's hard to imagine stepping away even for a few hours.

Dave is with Riley tonight and this will be the first time we have not spent New Years together in 9 years. Hard to swallow but, easier to do when we both are fighting for our baby girl. Riley is daddys girl and convincing him to leave last night was hard but, he knew he needed rest too.

We are all so overwhlemed with you love and support and feel it in many ways.

We all as a family want to wish you a happy new year. Personally, our family has been through many struggles in 2012. We were looking forward to putting this year behind us for so many reasons. Now I can't wait to send 2012 out!

Riley is stable. Responding to touch, pooping, coughing and gagging. I hope we see her open those beautiful blues soon!

Now, I just want to wake up and see 2013 as a year of change and healing. We wish you all a better tomorrow filled with love, peace and happiness.

Dave, Megan, Logan, Mason and courageous Rilwy

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

Sunday, December 30, 2012

* I'll be adding pictures to my posts. I want you all to know that some of them are difficult to look at. **

We've decided to start using our family blog that we haven't used since I was pregnant with the twins to keep you all updated on our sweet Riley.
I don't have time this morning to give the full story of how we got here but, will try and put something together for those of you who aren't familiar with Riley's story.

Riley is currently having her morning CT scan done. She is stable and all of her vitals are doing well. Right now, everything is day to day and we are just waiting.

I can't begin to express the overwhelming feeling of gratitude we have to each and every single one of you that has been praying for our sweet baby girl. She needs all of the prayers she can get. Dave and I commented to each other this morning how we have people of every faith from every state and many countries around the world praying for Riley. That is powerful!

I've read through all of your fb messages, posts, texts. They are so helpful in times of stress. Dave will read them eventually but, for now it is too difficult.

My MIL just arrived here this morning from MT along with my BIL and nephews. My brother will be flying in on Tuesday from CT. My parents, FIL/SMIL, SIL/BIL and our dearest friends have been helping us physically an emotionally with everything. We have an amazing support system and Riley has a family who adores her and is doing everything they can to make sure she feels the love from her family.

The head of the PICU was on the floor yesterday and we asked him if Mason could come see Riley. Normally, children under 3 are not allowed on the floor. He made a joke about bending the rules and double checked with the Charge Nurse if it was ok. Late yesterday afternoon, Dave brought Mason by to see his sissy.

CHOC will be Riley's home for the next few weeks. The staff is wonderful and aside from the ass Nuerosurgeon who we call Dr. Doom, we've only encountered a team of the best pediatric doctors/nurses in each of their own respective specialties. Riley is getting the care she needs.

Riley hanging out with electrodes monitoring her brain for seizures.

The machine monitoring her is amazing. The tech has a camera watching Riley's every move. It records sound as well so we have to be careful what we say!

I'm not sure why this is all showing as a wall of words and I haven't yet watermarked my pictures but, I feel safe enough putting this all on the interwebs for now until I can get help with that.

Thanks again and welcome to the Hopper Household. Riley appreciates ALL of you!

Megan, Dave, Logan, Riley & Mason