Thursday, February 28, 2013

Happy 1st Birthday Mason & Riley

Happy Birthday to our babies!  What a year it's been.  I can still remember how shocked we were when we first found out and how nervous we were the entire pregnancy.  What would we do with two babies?  How would we handle them at the same time?  How would Logan react? 

When we first found out we had multiple ultrasounds to confirm the pregnancy and weekly ultrasounds to make sure both babies continued to grow.  I still remember a very early ultrasound when one of my doctors Dr. M walked out of the room and said "be careful what you wish for".  He had seen something on the u/s but, didn't let us know that it was indeed 2 babies.  It was a few weeks later when we had our 12 week NT scan that the tech told us she thought we were having a boy and a girl. 

 At our 20 week gender ultrasound appointment it was confirmed that we were indeed having b/g twins.  I still remember telling Logan and it was like he'd hit the jackpot, a brother and a sister!

We prepared for the babies arrival but, never really knew what we were in for.  A little after Christmas I started having braxton hicks contractions and ended up in L&D sometime in mid January for monitoring.  It was the week before my grandmother's funeral and my doctor didn't want me to make the car trip to San Diego for the services just in case something happened.  From that point forward I took it as easy as possible and set my sights on making it to my scheduled c section at 38 weeks.

The morning of February 28th arrived and we dropped Logan off at my parents house.  We arrived at the hospital around 530/6 am and began the prep for my repeated c section.  The nerves I felt this time were unbelievable.

The anesthesiologist had a difficult time getting my spinal in and my doctor urged her to try one more time before making the call to knock me out.  I am so thankful for that last try!

This time I felt more pain then I did with Logan but, the excitement to meet our babies helped me power through the odd pains, tugs and nausea.

At 8:16 am baby A Riley Elizabeth was born weighing in at 6 pounds 9 ounces.  A minute later at 8:17 am baby B Mason Scott was born weighing 6 pounds even.  Dave says they were actually born in the same minute but, they called them in separate minutes.  We sort of like that Riley is the "middle" child and has an older and younger brother to look out for her.

At first Mason seemed to be in respiratory distress and they whisked him away to the NICU.  I was sad.  Dave left with Mason and by the time he returned to the OR they made the call to send Riley to the NICU as well.  I was crushed. 

They sewed me up and sent me to recovery where I had to sit and wonder how my babies were.  Finally, after I was cleared to go to my room they wheeled me through the NICU for a first glance.  They looked so tiny, Logan was 9+ pounds when he was born and the difference in size and addition of the machines just made them look little.

We got settled in to our room and Dave made multiple trips back and forth to the NICU throughout the morning to check on them.  Surprisingly, early in the afternoon they brought Mason to me.  He was so cute and looked just like his big brother.  A few minutes after Mason got to me Logan arrived.  He was so excited to meet his siblings.  He kept asking where Riley was and it broke our hearts to tell him she was in another room that he couldn't go in to.  Little did we know then that having the NICU experience would make this illness with Riley much easier on Logan.  He knows she came home eventually and the doctors made her better so he tells us all the time that Riley will get better.
Unfortunately, Riley still had to stay in the NICU and was being monitored for her lung development.  Most expected Mason to be the one to need the longer NICU stay as usually little boys end up in the NICU.

The next morning I remember wondering how I could get over to see Riley.  I knew I had to get up and walk or else I would only get to see her through pictures.  Unlike with Logan when I didn't get out of bed for 36+ hours (big mistake) I made sure to get moving ASAP.  One of the nurses who I knew through work gave me a pep talk and pretty much made me get out of bed.  I am thankful for her proactive nursing and encouragement to this day.  Dave walked in the room as I waddled my way back to the bed from the bathroom and I think he almost fell over.  It's true when they say there is  a will there is a way.  I was determined to see my little girl!

Seeing Riley in the NICU was the hardest thing I had ever gone through.  She was hooked up to a zillion machines and we could only touch her at first not hold her.  She had the signature Hopper baby look though and laid in the warm bed in just a diaper with her hands up above her head.  She was watched over 24 hours a day with a nurse sitting beside her the entire time.  This would be the first time I knew what angels nurses were.

My doctor allowed me to stay a day longer then normal and we discharged with just Mason 5 days after my c section.  It was such a happy/sad moment.  As we drove away from the hospital I cried and cried.  How could we just leave our baby behind.  I knew she was in good hands but, it was hard. 

Thankfully, 2 days later we got to bring Riley home!  And our adventure began.

Mason, you are a spitting image of your big brother.  You look so much like Logan that Logan thinks some of the pictures around the house from when he was little are actually you.  You have a fiery personality,  You are determined.  You adore your big brother and sister.  You've come a long way from the little 6 pound infant you once were.  At last check you were 22 pounds.  You've taken your time to do things but, always do them on time.  You army crawl with the most determined look on your face.  If you want something you will get it.  You are SO close to walking and cruise the couch and anything else in your path.  You eat anything.  I don't think we've given you something that you haven't enjoyed so far.  You have a little temper already and when you are hungry or tired it really comes out!  I think you may have my personality.  You light up a room and have since you were born.  Your giggles and smiles are infectious.  I hope your determination to get something and happy go lucky personality never change.  You're our littlest bubba and bring us so much happiness.   We can't wait to see you grow.  Thank you for being our youngest and being so much fun.  Happy Birthday Mae Mae! xoxoxo

Riley, oh how you've tested us from day one.  You are our cautious, curious little girl.  I tend to think you know you have 2 brothers who will always watch over you so you let them take on those protective roles. You're picky, in a good way.  There were only certain people you'd let in your circle.  Once in they were your buddies.  You don't like new situations and rarely crack a smile at a stranger.  Daddy thinks this is good.  Once you are comfortable in  a situation you have fun.  You're sneaky.  One of your brothers turns the other way and you dive in to steal a toy.  We've always joked that you were our lazy baby but, really I think you like the attention you got because of it.  While Mason would do something you'd sit and watch and then sneak in your milestone a couple weeks later.  You do things on your time and when it is right for you.  You are so girly.  You love your dolls and the pretty makeup mirror you got for Christmas.  We call you our pretty pretty princess and mommy calls you pretty princess pants.  You adore your brothers.  We love seeing the way you look at them and how much you want to be like your big brother.  We hope your feisty nature and serious personality take you far in life.  You've scared us more then we ever thought possible.  I think mommy and daddy both have half a head of grey hair now.  We are thankful for you.  We are thankful you're here to celebrate your birthday.  Keep fighting baby girl. xoxoxoxo

As we celebrate today a bit differently then we had expected we still realize it is a celebration no matter where we all are.  I've always LOVED 1st birthday parties.  Celebrating a child's first year of life and toasting the parents and family for surviving the first year!

We're so thankful to have both of our babies with us as we hit this birthday.  I knew my life had changed forever when Logan was born but, I never knew how much it would change.  We've gone through some of the best and worst days of our lives since having children and yet, I know these trials and tribulations will only make all of us stronger.  The thought crossed my mind the other day that if things had gone according to Dr. Doom we wouldn't even be in this situation and given the opportunity to celebrate both of our babies today.  I quickly replaced that thought with how thankful we are. 

We've prayed, remained hopeful and faithful and been supported through the last couple of months and last year by the most amazing group of people.  We've had support from all over the country and many countries around the world.  Our families have banded together to help make this whole situation and the transition to 3 kids easier for our little family.  We've met the nicest nurses, doctors, therapist and support staff to help us make it to this day.  We've had good days and we've had bad days.

Today we choose to celebrate Mason & Riley and toast all of you.  One day when my letter begins Happy 18th Birthday Mason & Riley we will tell them how far they've come and how loved they've been by so many different people.  So thank you.

Happy Birthday Mae Mae & Ri Ri.  Thank you for changing our lives forever!

And cheers to all of you!

Dave, Megan, Logan, Mason and Courageous Riley!

*** All of our professional pictures are courtesy of Julie Andress Photography.  If you're in the Pasadena area and need a photographer I can't rave enough about her work.  Check her out!***

Wednesday, February 27, 2013

Happy Birthday Hannah! Riley GI update!

I'll have a very special, picture filled post tomorrow morning but, wanted to stop in and give you a little Riley update.

She finally made the trip over to CHOC today to see her GI doctor.  All is good in her abdomen.  No blockage or issues.  The GI doctor thinks they haven't been feeding Riley enough and by slowing down her feeds they've actually been messing with her tummy.  Not exactly the medical terms she used but you get the point.

So Riley will now get her 100ml (about 3 1/2 ounces) over a 15 minute period in a bolus.  Basically, an over sized syringe.  She'll get her feeds every 4 hours and the night feeds will be stopped at 10pm.  She'll start her morning feeds at 6 am.

So far so good!  2 feedings since she got back and she's tolerated them just fine!  She is still gassy but, that is natural and actually slowing her feeds probably slowed her intestines.

We hope this is it!  Really, truly to have this figured out will be such a blessing and relief for Riley!

Dave also made Riley's next appointment to get Riley's "button" put on.  Basically right now she still has a tube that comes out of her tummy.  Her mickey button will allow her to wear onesies and normal clothes again when she isn't feeding.  She'll go back for that procedure on March 22nd.

So it's been a good day although, I think the trip in the ambulance and waiting for the doctor wore her out!

I'd also like to wish a very Happy Birthday to Hannah, our babysitter/nanny whatever she wants to be called! :)  She had Mason today for part of the day so hopefully he was a good baby for her.

Meeting Hannah months ago with her mom in the Methodist cafeteria was such perfect timing.  Hannah is wonderful with all of our children and has always had a special bond with Riley. 

I hope that when Riley gets older she will be just as sweet, sincere, caring and thoughtful as Hannah is.  She's set the bar pretty high!

Happy Birthday Hannah!  Thank you for everything you've done and for being a part of our lives! 

Dave, Megan, Logan, Mason and Courageous Riley!

Sunday, February 24, 2013

3 weeks

I find myself most days unable to remember the date or the day of the week but, I can count the days we've been in this situation with Riley and also tend to count the weeks.  We've been here at Healthbridge now for 3 weeks. 

When I look back at when Riley transferred here from CHOC to today I know we've come a long way.  Riley is more awake.  She's doing new things each day and she's made progress.  I wish that it were more but, I also have to realize we're moving at Riley's pace and she's setting the tone for how this goes!

Thursday, Riley tolerated the passy valve for 40 minutes while AWAKE!  So happy that she can do this now!  She also enjoyed the sucker the ST was giving her.  Basically, it appears that she now knows that the sucker is good and she should lick it!  We were also able to get the passy valve on her on Friday and she tolerated it again.  Dave asked the ST yesterday if we could get clearance to use it more often.  She is going to sign off on letting us use it.  We will be allowed to put it on in 30 minute increments when she tolerates it.  Riley opens her mouth so much now.  She had it clenched closed for so long and we were very worried about that. Today when I felt around her I mouth I noticed some new teeth. She now has 4 teeth!  2 upper and 2 lower.  Problem with the teeth is she now occasionally bites her tongue.  We're trying to see if she'll take a pacifier but, of course she never took one before so she's not buying it.  As I tried it again with her today all I could think was how ironic it was that I am trying to get my almost one year old to take a pacifier when most parents are starting to take them away!

We did OT in the room Friday.  Riley did all of her stretches and was able to have some tummy time.  To our amazement she was able to hold her own head up while propped on her hands.  Our kids all have big heads (must be a Hopper side of the family thing/ really I think it's a McEachern thing :)) so holding her head up even when she was an infant was hard.  Of course she gave me the grimace face when I went to take a picture but, we were so proud of Riley for doing this! 

She has been doing so much better during PT/OT.  She tolerates the time and participates which is huge!  She did her PT in the therapy room yesterday and the therapist was very happy when she brought her back.  We've started letting her go to PT on her own.  I remember when Logan was playing indoor soccer or took a gymnastics class if I was present he'd run to me a million times and not participate as much as he would when we weren't right there.  We decided to test this theory that kids do better when parents aren't present and it seems to be working.  I think now that she is comfortable with all of the therapists it's good for her to do them without us there for everything. 

Late afternoons seem to be a stress point for Riley.  She is very awake and very alert but, still gets agitated.  I tried everything the other day from rocking her to laying her on my bed with me to walking the halls and she didn't want to calm down.  Finally around 5pm Riley got some Ativan and calmed.  It's like having a newborn again. Riley knows what is going on more then a newborn though so she gets more frustrated and worked when she can't get comfy or has something bothering her.  We really need to find ways to teach her to self soothe again.

Yesterday, Logan was able to go spend some time with his cousins.  Logan loves spending time with all of them and Uncle Scott  took them to a museum yesterday and then all of the boys went bowling today.   When I asked him who won in bowling he told me he and Tobin did of course.  I think the older cousins were nice and made him believe that! He needs these distractions and normal activities so we are so grateful to have such wonderful Aunts, Uncles and cousins who will entertain Logan! 

After I dropped Logan off at Uncle Scott and Aunt Becky's yesterday I brought Mason down to see Riley.  It was a beautiful day and we were able to put Mason and Riley in the stroller and actually go outside on a walk.  Mason was giggly the whole time and Riley opened her eyes when she was in the shade.  This was the first time in almost 2 months that Riley had been out in the fresh air and sun.

Grandpa Hopper spent the night with Riley last night and Hannah watched Mason so we could go out together for the fist time in forever.  Grandpa had a bit of a rough night as Riley de-sated a few times.  She never does this so who knows if the pulse ox was reading wrong or it was just an off night.  We can't thank him enough for being the first to stay over with Riley and giving us some mommy/daddy time together.  He's really stepped up to learn all about Riley's care and be there whenever we need him to be. 

Our kids hit the jackpot with amazing grandparents.  Grandma Marie found this perfect fabric for Riley and made her a blanket.  The words are so fitting for Riley's situation.  She also sent a bunch a clothes that are perfect for the hospital and keeping Riley stylish! My mom continues to watch Mason on Tuesday and Thursdays for us and whenever we need a helping hand.  I think she enjoys the walks they take together to the store.

Today Logan came down with daddy to visit.  Hannah also came to see Riley.  It's really nice to see Riley recognize the people she loves and make eye contact.  We know she feels the love from

Tomorrow starts birthday week.  I am trying very hard to hold it together for this week.  Thankfully, the staff is very concerned about how we are going to feel and wants to do anything to help us out.  I'm still debating how to handle the actual day.  I don't know if I want to disrupt our schedule by having Mason and Logan down Thursday evening or not.  We will be having a small get together on Saturday though to celebrate.  Unfortunately, we are limited with the number of people we can have so it will be mainly family and a few friends.  I hope in 6 months when this phase is past us we can have a big party to celebrate the way we always wanted to. Knowing we have Riley with us for this milestone makes it easier to power through the difficulty of not having her at home with us for her birthday.

A year ago we were so nervous to be welcoming 2 babies in to our little family and had no idea what we were getting ourselves in to!  I can truly say this last year has changed us forever.

Dave, Megan, Logan, Mason and Courageous Riley!

Wednesday, February 20, 2013

You get what you ask for!

We moved rooms again on Monday.  We are now in a quiet, cool, single room with an attached bathroom.  It's off the main hallway and away from the other rooms.  They use it as an isolation room if needed but, supposedly it hasn't ever been used in that capacity so we should be good in here until we go home.

We've learned that there are certain nurses/doctors who make things happen and others who seem almost paralyzed with how to problem solve and get things done.  Thankfully, Monday we had A, a wonderful, amazing nurse who listened again to our request for a cooler room and made the switch happen.  We were lucky to have A the last two days and she has really helped me through this stage in Riley's recovery.  Explaining what is going on, reassuring me that it is ok to give her certain medicines to calm her and telling me that this will all just be part of Riley's story.  A is also a hospice nurse and I told her she must be an angel to deal with two very stressful jobs.  Her interactions with the children here are just wonderful to watch.  You can tell that they just adore her and that she is one of the special ones.  I know that if we need anything done or help figuring something out she'll be the one to turn to.

Now that we've been here for about 2 1/2 weeks we're starting to really know the staff and residents.  As hard as the ICU was from a life/death standpoint, this facility can be difficult to be around for long periods of time as well. You see the care and love being given but, can tell the patients who may not get to go home or don't have that as an option and it can be sad.  I try not to think about it and we've become cheerleaders for a few of the patients that have befriended us.  We've watched one little boy "G" he couldn't get out of his wheelchair when we first got here.  Now he is walking down the hallway without the assistance of his wheelchair and just a reasurring therapists hand behind him.  Everyday I tell him what a good job he is doing and everyday he smiles and says thanks.

There is also "B".  The social butterfly around here.  She always has a bright smile and is getting all of the other kids to join her in a game of Wii in the hallway.  Then there is our neighbor who rocks out to his music at 6pm every single night.  He enjoys each beat and his enjoyment can be heard all the way down the hall.

These children have really taught us that no matter what you face, no matter what your disability you can make a choice to enjoy each moment or not.  They take advantage of every opportunity given to them and make the best of their situations.  I look forward to seeing them each and every day and love that they like to check in on Riley and remind us how far they've each come individually and how far Riley will go.

We finally saw the GI doctor today!  Initially, when they tried to get us an appointment over at the CHOC clinics we weren't going to be able to get in until 2/27.  So we said we'd see anyone over there not just the doctor that did Riley's gtube placement.  After our roundtable meeting yesterday we were told that one of the doctors would actually come by here to see Riley!  What a freaking relief.  No ambulance transport, no special RT needed and no waiting around an office to be seen.  Dr. Katz just left and has a few ideas to help Riley out.

First, he doesn't think it's a formula issue.  She's on the same formula she's always been on.  They just started prevacid a few days ago and he wants them to split up her dose.  Children metabolize medicine much faster then adults so he thinks that will help.  He is also going to add a small dose of azithromycin to help get things going in her tummy.  One of her medications, baclofen, can cause things to slow down in the intestines so hopefully this will help.  He was very positive adding that as she gets better and is more mobile most of these medications can be stopped.  Of course the surgery possibility is still there but, it will be the last course to take if these things don't help.

Riley is also going to start on valium, again a small dose, twice a day.  Riley is more alert and aware of her surroundings right now.  She is moving her limbs with purpose but, she is also agitated as realizes she can't do what she wants.  I can't even imagine what she is feeling.  We put a toy in front of her and even though she wants to play her brain doesn't connect to tell her how to play.  It's amazing what we take for granted on a day to day basis.  The valium will help keep her relaxed and yet, awake.  She'll still have ativan available for her when needed.

Riley's nuero rehab doctor has been fantastic with working on her meds and trying to find the right balance to help Riley be comfortable but, also allow her to be a participant in therapies and be more alert in general.  She is just coming to Healthbridge and CHOC from Loma Linda and is still in a transitional period.  Knowing she is calling the shots on her meds and adjusting them as needed is a relief.  We hit the jackpot when it came to doctors for this stage of Riley's care.  She's also a mom with 3 young kids so we connect and she listens to what we have to say about Riley.

As far as therapies Riley is doing great.  Participating more and more each day.  Over the weekend we were both pretty down and Monday Riley showed that she could/would particpate in her therapies and was the most awake she'd been since this all happened.  It's like she knew mommy and daddy needed a good day from her.

We're in the middle of forming a plan for Riley's homecoming.  It will be a specific date regardless of where she is recovery wise so we have to put a ton of pieces together to make it all happen.  Hopefully, given the timeframe we are working with Riley will have made big progress and we won't need as much help as we are planning for but, realistically we will. 

It's so hard day in and day out for us to concentrate on getting anything done. We have so much that needs to be done and yet, Riley things or time with the boys just seem to overtake our days.  We both yearn for the boring normalcy that we had before this all happened.  Planning our weeks in advance and trying to balance all of the meetings and phone calls that come with Riley's illness and recovery are overwhelming at times.  My stack of insurance paperwork and bills seems to be growing by the minute.  Oh well.  With time it will get done.

Prayers are being answered and Riley is still making the progress she needs to.  Tonight, while with daddy, Riley has been awake, alert and looking all over the room.  I hope this continues.  All we can do is make sure she knows we are there for her and that she is fighting hard for a reason.  Beyond that it is up to Riley.  Thankfully, she is our feisty girl who won't give up!

Until next time we stay faithful, hopeful and believe in our little girl. 
Fight on!

Dave, Megan, Logan, Mason and Courageous Riley!

Sunday, February 17, 2013

Birthdays, family time, moves and tummy issues!

We've had a great weekend. We were able to take the boys to my goddaughter's first birthday party yesterday while Grandpa Hopper spent literally the entire day with Miss Riley. We can't thank him enough!

Mia, my goddaughter and the twins are 11 days apart. Today is Mia's actual 1st birthday!  Happy Birthday baby Mia!!!

Oh how I wish Riley could have been there to celebrate her first girlfriends birthday! It was a fantastic party and both the boys were zonked after! I've been looking forward to this party for weeks and I am SO happy we were able to attend as a semi together family. It was a ladybug theme and the decorations, food and favors were all so perfectly coordinated. I forgot to take more pictures with my real camera and only snapped a few with my phone but, it was a perfect afternoon celebrating the sweetest little girl and her amazing family!

I knew that after Mia's birthday I'd have to start thinking about Mason & Riley's birthday and the fact that in reality Riley won't be home and we won't be having the type of party I'd already planned out in my head 6 months ago. So, today I've been sad yet, trying to figure out a good way to celebrate my babies and celebrate life! One of the nurses asked me about Riley's upcoming birthday today and it took all I had not to cry. But, it is what it is and eventually, one day, we'll have the party I had always envisioned.

Yesterday, we were also able to see two individuals who I always, always think about especially in those moments that really overtake your thinking and try to make it so you are unable to see in to the future or see that there is a future at the end of this road that doesn't involve our family always being apart and trying to coordinate schedules that continually change . I think being in their presence and having conversations with them made me leave feeling a new sense of calm about Riley and this situation we deal with day in and day out. There really are people all around us that continue to lift us up.

Today Logan was able to go with Grammie & Pa Doug to their house in Del Mar. On the way they stopped in to see Riley and Logan got to play at the beach after. Only in CA are we heading to the beach in the middle of February and then putting our flip flops away for another surge of "winter" two days later!

Jen Jen spent the night with us last night and we headed down to meet Dave and Riley after Mason took an extra long nap this morning. We ended up waking him up after 2 1/2+ hours. Jen Jen was able to hold Riley and see her new room. Mason was crazy as can be climbing on anything and everything he could get his little hands on!

Tomorrow we deal with Riley's GI issues. It's a mystery to just everyone what is going on with Riley. Is it too much formula too fast? A tummy bug? GI issues with digestion? Acid reflux? Lack of good bugs in her tummy? (they've added probiotics to her meds) Teething? A combination?
All we know is as soon as Riley starts her feeds she starts to get agitated and it's been happening for 10 days or so. They stopped her feeds Friday and she had pedialyte for 36 hours or so and seemed to calm down a bit but, still was bothered. She needs her calories so they started her back on formula today but, the volume and time that she receives her feeds have been adjusted to allow her more time to digest. Riley has always been a light eater and would rarely finish her bottles whereas Mason was always eyeing her bottles at the end of a feeding. I hope it's just a matter of figuring out how to get her the calories she needs over a longer period of time and not something more serious. My gut tells me it has something to do with her gtube but, I am not a doctor nor a nutritionist so I could be wrong.

At first we thought we'd be transporting Riley ourselves back to the CHOC clinic and the fear this thought brought over us was overwhelming. Thankfully, transport will be arranged and we won't be taking her by private vehicle but rather accompanying her on her ride over. I hope and pray she's in and out and they figure out the issue without us having to do anymore procedures. I also thought last night that maybe since it's been almost 4 weeks they will put in her button and take out the longer tube but, that may be wishful thinking. We'll update tomorrow when we know more but, we really hope we find some answers for Riley. I think this will be a piece of the recovery puzzle that will help her be more active in rehab and alert during the day if they can figure out what ultimately is going on!

We moved rooms on Friday which meant Riley had to be re-evaluated by all the different therapies, we had to fill out in take paperwork again and we had to get used to new surroundings on the other side of the facility. Riley was taken off of the sub-acute care classification and put in to the acute care side. Yay! Another step towards home! Basically, we moved across the small facility to have the same nurses, doctors and staff but, the insurance is now billed differently:) The room is cute but, hot and bright. My entire family is warm bodied and Riley is super sensitive to light right now so we will probably, hopefully, move two doors down tomorrow to a cooler, darker room. It's been warm here but, not So Cal summer warm and I can only imagine on a 90+ degree day how hot it could be in here.

So we're in a holding pattern until we figure out what is going on with Riley's tummy. I have no idea how fast we'll get in to CHOC tomorrow.  Hopefully, sometime tomorrow afternoon.  We start another new week though still feeling optimistic and feeling very happy with the little progress that Riley is making.

Baby steps!

Dave, Megan, Logan, Mason & Courageous Riley!

Thursday, February 14, 2013

Valentine's Day Greetings!

***For some reason my pictures won't copy to the areas I want them to today! So they are staying at the top for now!***

Happy Valentine's Day! We hope you have all had a day filled with love and those you love close to you.

I woke up with Miss Riley this morning after an okay night. They've adjusted her feeds from continuous to every 4 hours during the night which seems to help a bit with her tummy issues. They still vent her halfway through her feedings in hopes that it helps her digest her formula better.

Yesterday was a big day for Riley! We finally were able to get her in to the therapy room for PT/OT. Usually, therapies had been done in bed and we requested taking her to the therapy (play) room as we believed a change of scenery would be good for her. I carried her over to the room and as we were getting all set up Riley filled her diaper in my arms and it was a mad scramble to make it back to the room to change her without letting her diaper contents get on anything! I think getting up out of bed helped get things moving so to speak so Riley was definitely ready for therapy after a diaper change!

She started off on this board swing thing with the PT. At first she was sleepy and resisting relaxing but, once they got swinging she really enjoyed it. After the board swing she was able to go in to a baby swing all by herself. She was propped up with a pillow but, we were able to get her to hold on and she LOVED it! She was wide awake as she was swinging and then we dimmed the lights and she took a little nap. She always loved her swing at home so I know she enjoyed this.

After we were done with PT we moved in to OT. She stayed in the swing a little longer and then was able to sit on the mat with the OT and play with some toys. Again, she was hesistant at first but, then relaxed enough to sit closer to the toys. She was opening her eyes and we could tell she wanted to play. Right now Riley may have the desire to do something but, her brain doesn't connect to tell her what needs to be done to do something. For instance, she wants to grab for the toy but, she doesn't quite know how to do it. Therapy that involves repetition and us showing her how to do something over and over is what will help rewire her brain to eventually do it on her own. I feel bad that she can't get it all right now but, she'll get there with continued therapy and hard work!

We're hoping that she continues to tolerate the therapy rooms as they are filled with toys and many different therapy devices that I know she'll enjoy playing with.

Riley had ST yesterday morning as well. Grandpa Hopper was with Riley as Dave had a meeting and I was home with the boys in the morning but, she tolerated the VitaStim and is working more and more on her swallowing. This morning during ST she again had VitaStim and another try at the Passy valve, this time while awake. We were both in the room during this trial and let me tell you Riley's personality is all there because she was being stubborn and even figured out how to pop the passy valve off. When she did keep it on we were able to hear her little voice and as Dave said it was the best sound we've heard in a long time!

We're learning Riley's cues but, it still is anyone's guess what is really bothering her when she gets worked up. Does her tummy hurt? Are her new teeth bothering her? Is she frustrated that she can't do more right now? So, we try anything and everything to get her comfy and talk to her over and over telling her she can do it, she's brave, she's courageous and we are here for her every step of this journey.

The power of familiarity is becoming more and more evident as Riley calms down so much more when those she "knows" are around her and when the nurses/staff she likes are around her. I typically take a morning nap with her if I am here. It's a sure way to get her relaxed and calm. Yesterday, Hannah and her mom came to visit and while Riley seemed to be having trouble calming down and spiked a slight temperature she relaxed immediately while rocking in Hannah's arms. It's just further proof that she knows who the people she was closest to are and we are happy we can surround her with the love and familiarity she needs.

We hope you all had a great Valentine's Day. Today Dave will stay the night with Riley and I'll be home with the boys making the requested red heart pancakes that Logan wants for dinner. This morning we treated the nurses at Healthbridge with some heart shaped bagels and dropped off lunch from CPK for the PICU staff at CHOC. We also made some Valentine goody bags for the nurses/staff at CHOC as well. Of course in the chaos of dropping the food off I forgot to leave the notes we had for all the nurses that had taken care of Riley. So, we'll need to make another trip to drop those off soon.

Hug the ones you love not only today but, each and every single day. While some people celebrate Valentine's Day and others just consider it a Hallmark holiday, I still think it's a good time to remember to tell the people you love how you feel all the time not just once a year. Life is so so precious and can change in an instant. XOXOXOXO

Dave, Megan, Logan, Mason and Courageous Riley

Sunday, February 10, 2013

A good weekend!!!!

I started this post two days ago so I want to leave it as it was but, add to it. We had such a fabulous weekend with Miss Riley and all of the friends and family that visited. Riley is so lucky to have so many people that care about her and so are we. We had a busy weekend with Ron/Chris, Erica/Donovan, Debbie/Jerry, Uncle Scott/Drew, Uncle James, Grammie/Pa Doug and Grandpa Hopper spending time with Riley. The highlight of my weekend was all of my babies in bed with me when Mason and Logan visited together today. There is nothing in this world better then snuggles from your babies! Anyway, we took Logan and Mason out on a mom/dad date today to Chuck E Cheese and even though I wanted to sanitize the entire place we had a wonderful time!

Now, I'll leave you with what I wrote a few days ago....

I've often wondered about the bond between Mason and Riley. In fact, long before Riley got sick I would look at the two of them and think about what they thought of one another.

They are fraternal, obvioulsy, yet they still seemed to have a secret bond that only twins shared.

Mason is young. Will he remember any of this one day? I really don't know. He seems to be thriving. He gets one on one attention daily that he only got sporadically before. Does he miss Riley? Does he know she isn't sleeping in the crib next to him each night? Really I don't know the answer to these questions.

Yesterday, my parents were able to bring Mason down to visit Riley. Before they arrived I changed Riley out of her PJ's and in to an outfit complete with leggings and a bow. I informed everyone that Riley's twin was coming to visit and was nervous with excitement to see how they were with each other. During the last 5 + weeks they had only been together one other time when Riely was in very critical condition.

Mason and my parents arrived and we met them out front. We took Mason to Riley's room and he seemed overwhelmed with everything that was going on in Riley's room at first. The equipment, stuffed animals, toys etc. When we first put him on the bed with her he seemed more interested in her humidifier. Then, it happened. As dramatic as it sounds it really happened this way. Mason reached over and grabbed Riley's hand. I exchanged glances with my mom and of course we both started crying.

Unlike Logan who can express how he misses Riley, Mason can't. I never knew the bond they had until that moment. We were able to put them both in their stroller and walk around the inside of the facility. The entire time Mason was trying to play footsie with Riley, just like they always did when they rode in the stroller together. Riley wasn't as fond of the game as she had been before but, I know she knew Mason was there with her.

Hopefully, we'll make Mason/Riley visits a weekly thing.

Riley had a great day today after a really crappy night. We had started noticing a trend in when Riley would become fussy or aggitated recently. Her aggitation seemed different in that she wasn't posturing as she did when she first woke up and she had started to arch her back and wiggle her entire body when her fits would start.

Last night, I was actually sitting with her in the rocking chair when they started her feeds at 6pm. Not 10 minutes after her feeds started she was super fussy and uncomfortable. It all started to click and I called Dave because I knew hed had the same thing happen the night before around the same time. We pieced our experiences together and started thinking she was gassy. I got a nurse in the room ASAP and she listened to Riley's tummy and agreed with me. They were able to "vent" Riley's gtube to get the air out of her tummy and she has seemed to be feeling better since.

We did have a rough night though while she worked through her issues but, despite the lack of sleep I was able to lay in her big girl bed and rest with her until Dave got to the hospital around noon today. Seeing her sleeping so peacefully in my arms made the long night worth it.

While Riley was sleeping with me today she was scheduled to have ST. Since she was so comfy the ST decided to try the passy valve again on Riley's trach. Low and behold she was able to keep it on for 40 minutes without a change in BP or O2 levels. This was a huge step for Miss Riley and one that she needed to take in order to see if she would be able to eventually come off of the trach. Hearing her voice, even though we've heard it over the trach, was an added bonus to the passy test. Riley continues to amaze us.

I'm home with my boys tonight and loving every minute. Mason is eating table foods, cruising the couch and looking like he is about to take his first steps. I may or may not be hoping he takes those steps while I'm home. Wednesday when I got home and picked Logan up from school we went to get frozen yogurt and made an Old Navy run to redeem some coupons I had. Logan loved riding in the stroller with Mason although, he looked quite ridiculous as he isn't exactly a small 4 year old!

Tonight, Riley has been more alert and awake and Dave is enjoying some one on one time with her. We have many visitors planned for this weekend and can't wait to show Riley's new home off.

She continues to amaze all of us and take the little steps she needs to. Riley truly is courageous.

We hope you have a great weekend!

Dave, Megan, Logan, Mason & Courageous Riley!

Wednesday, February 6, 2013

Wednesday's ramblings!

Before my Riley update I wanted to share a couple stories with you all.

Back a few weeks ago on January 1, I talked about a picture in the donut shop by our house of a beautiful girl that said Everyday is a Miracle. I told Dave about it and always kept this picture and saying in the back of my mind. We tried to figure out what she may have had and assumed possibly she had been diagnosed with cancer. Anyway, that saying and her picture have stuck with me. In fact I believe right after I took note of the picture Dave called to tell me Riley opened her eyes for the first time. It was a weird "sign" to me that things were going to be ok. I felt like I knew Riley would pull through this and that once she got to the safe side of her illness we were ready to take on whatever we needed to in order to help Riley on her road to recovery.

Yesterday, as I was getting my soda before heading down to meet Dave and Riley at Healthbridge I was again drawn to the picture and this time took note of her full name. Thanks to a quick google search I stumbled upon the website that had been set up for her. At the time she was 16 and had a terrible car accident. Her parents were told she wouldn't survive and if she did she'd be a vegetable. You know all the things we were told about Riley. She suffered a TBI thanks to her accident. Yep, a TBI just like Riley although the ways they aquired their injuries are very different. I've spent the last couple of hours reading through her website and reading a beautifully written article that the La Times did on her in 2007. Her website talks about her families devotion to her recovery, her group of friends who have stood by her side and the faith and hope that they always kept in her. The webiste has many inspirational quotes, pictues and videos of her throughout the years and left me with an overwhelming sense of calm (after a few tears were shed) about the road we are traveling with Riley. It's going to be rough and it's going to be hard but, we will stay strong for Riley and continue to rally as many people as we can to support her and remind her what she is fighting for.

I've felt signs and little things here and there that have provided me hope and faith when I was feeling really weak and this picture has been one of them. Now I am in amazement that Riley and this girl share the TBI diagnosis. It's weird. Why did I pay so much attention to the picture finally and why did I look her up yesterday? I do not know but, I do know that now 8 years after her accident she is doing well. She has made amazing strides in her recovery and blown the doctors away. Her mom told me that she is still their same daughter in her personality and spirit. While she has many physical challenges and limitations that she faces every single day she still pushes on and enjoys life. I've also read that she spent time here at Healthbridge before going home. She lived in our community, attended the high school in our district and grew up where we live. She is my new inspiration and her motto: Be positive, stay strong, celebrate LIFE! will be one I continue to remember and tell myself over and over again as we go through the rehab process with Riley.

Another person who has been an inspiration to me is a girl I went to high school with. Long before any of this happened to Riley I would read her blog in utter amazement. Her strength, devotion to God and her faith were just amazing. My bff and I always commented to each other about how does she do it? Although, our situations are very different, Kristi has been the encouraging voice I've needed in the last few weeks and an example of the mother I want to be to Riley as we take her through this process. Kristi takes everything with such an open heart and mind and has fought very hard to get her daughter to have a special procedure done in Boston. You can read their story at:
Please keep them in your prayers. Like us they have two other children as well and have to figure out what is best for them and still carry the worry for their daughter Grace as she gets closer to this surgery. They head to Boston from TX next month for Grace's surgery. We're rooting for you Grace!

Now to Miss Riley Roo!

Riley had a special visit from Hannah yesterday (she's our part time nanny for those who don't remember). Unfortunately, Riley had her ST right before Hannah's arrival and OT during Hannah's visit so she was pretty zonked after. Hopefully, the next time Hannah is here she'll be more awake! This sweet picture is of Riley holding Hannah's hand. The love they have for each other is amazing and Riley is one lucky girl!

We had our first roundtable meeting with the team that is over seeing Riley's care and rehab. It felt like we were back at CHOC during rounds as we sat with 10 people who were going over Riley's case. It has been decided to reduce her dosage of Baclofen as it has made her super sleepy since she started on it a little over a week ago. Funny thing is once we got back to the room after the meeting, Riley had an hour of the most alert she's been since she started the medicine. So, hopefully with her body getting used to it and a slight dosage decrease she'll be even more alert and awake in the next few days! They've also taken her off the melatonin at night and will only do the albuterol treatments as needed. Her formula has been lowered calorie wise and she's getting water after each feed too. Riley has put on some lbs so it was time to back off on the calories for now. I'm looking forward to seeing Mason and Riley next to each other to do a size comparison because Riley was always 2 pounds less and I have a feeling she may be even bigger then her brother now!

Yesterday, during ST they did more VitaStim which helps to work on her swallowing. She's been getting pixie sticks that are dipped on a long q-tip to help stimulate her swallow. I'm sure Logan would be insanely jealous if he knew we were letting her have pixie sticks! She still saves up saliva in her chipmunck cheeks and drools quite a bit but, we've noticed quite an improvement in her swallowing.

OT had her moving all around and sitting up. Riley needs to move! After 4 1/2 weeks of basically doing nothing but sitting in a bed all the stretching and new postions and challenging therapies like sitting up, working on her head strength etc. are really good for her. Riley gets nightly baths in the shower room in this neat shower bed that rolls right in. She really seems to enjoy them and the lotion massage after. I consider this therapy as well! What gal doesn't like a nice bath? I tell Riley it's her Spa visit.

We're settled in and we are impressed with the care and plans they have for Riley here. There has already been talk of decannulation (removal of the trach) and how to get Riley to the point where that could be done. It's not happening tomorrow but, the doctors here really believe in getting kids off of the trachs ASAP if they can. I'm hoping and praying Riley will be a canidate for this and really the only reason she has it is for her secretions so if we can get those under control I think it is a real possibilty. We like this philosophy, who am I kidding we LOVE this philosophy. We're realistic though and know it may not happen for a long time and possibly not at all, although I really don't think that this will be something Riley has for a lifetime. So, we're learning all about the care Riley is going to need. Changing the canula, ties etc. Before she had the surgery I remember talking to the trach nurse about being able to take the kids with me to do errands, park, pre school drop off. She never told me that I was going to need someone who knew how to care for the trach with me if I was driving. It's a safety issue in case something were to happen and I wasn't able to pull over fast enough to care for Riley. So..... I'm happy we know now so we can plan this in to our future as well! I joked with Dave that if we lived in NYC we'd just hire a driver. Instead we'll make due and hopefully once we figure out when we're headed home we'll have some home health care for Miss Riley as well.

The g-tube will be in for a minimum of 3 months. Again, Riley is not even close to discussing it's removal but, the medical director here explained to us that it has to at least stay in for 3 months before it could be removed even if she was ready in 2 1/2 months to have it out. Something to do with scaring etc. Again, I'd love for it to be out sooner rather than later but, we're realistic and know it will stay in as long as it is needed. It's just nice to hear a team of doctors talk in terms of removal and how they will work to get her to that point! The positivity and plans to get Riley going on the path she needs to be on really have lifted our spirits after a few rough days at CHOC towards the end of Riley's stay.

We're hoping to be able to get Riley in the stroller in the next couple of days. We just need to learn how to use the portable breathing thingy (I don't know it's proper name) in case something were to happen while we were mobile. Of course we're not heading to the mall or down the street but, we'll start by walking Riley around the facility and then move on from there.

For now I'm spending a couple of hours at our office working on taxes, filing medical bills and trying to organize. Dave's off on a few job walks. It feels nice to be doing some "normal" things although being away from Riley is killing us both right now. Grandpa Hopper met me down at Healthbridge this morning and is spending the day with Riley so we can get these important things done. Dave will meet him to relieve him this afternoon. We're so fortunate to have family and friends who are willing to do all of these things for us. We don't ever leave Riley alone and even though we've been told we don't have to spend the night, we always will. Fortunately, extended family can stay with her as well so we may take them up on this offer soon so we can both be home together with our boys.

I sent out another round of shirts yesterday! Hopefully, if I got your info in time you'll have your shirt in the next few days! I will always have more so if you ever want one just email me.

Thanks again for everything! And thanks to the Puertas family for the sweetest addition to their son's birthday party this past weekend! xoxoxo

You are all amazing and the cheerleaders, prayer warriors and good thought senders Riley needs!

Fight On!
Dave, Megan, Logan, Mason and Courageous Riley