Thoughts...

So we have been pretty busy lately.  It seems like Raygen's appointments come in waves.  We can go weeks with nothing then all the sudden I'm driving to Seattle twice a week.  We recently went and saw the developmental specialist and speech therapist at Children's.  It's very interesting to get their perspective on Raygen because they see unique cases all the time.  In our area Raygen is the only child, that I am aware, that has HLHS.  Beyond her heart Raygen has the daily struggles and a big one for us is the communication link.  She is improving everyday, but I want to make sure she always has the tools she needs.  Someday my dream is to have a conversation with her.  To know what things she likes and dislikes.  I can't wait till she is yelling at me because she's mad or just telling me crazy stories because she has a wonderful imagination.  I can see it when she plays.  I believe this is possible. 

The developmental specialist was very please with Raygen's progress.  It has been 6 months since we had our last check up and Raygen has come a long way.  The doctor recommended that I just keep doing what were doing, but she thought I should:

a. Work on feeding more

b. Enroll Raygen in preschool

c. Find a speech/ot therapist

d. Tips on potty training

e. Tips on brushing teeth

f. Find a social environment for Raygen.

I love tips and advice.  Sometimes their tips actually work out and help us conquer milestones, but sometimes I leave an appointment feeling like what ever I do just isn't enough.  I know every parent must feel this way, but it just isn't possible to do EVERYTHING they think I should do.  Unless I quit my job, which isn't a possibility, there is no way I stand a chance. 

We live in a very rural area.  There are more doctors that haven't seen a child with HLHS then there is that have.  Our local hospital, which is 30 minutes away, won't even take Raygen.  Olympia hospitals, an hour away, are also a no so that leaves Tacoma and then Seattle.  So finding a therapist to help a medically challenged child is impossible unless I head North.  There is a possibility I could find someone in Olympia, but that's a big maybe.  Many doctors and therapist are scared of Raygen because of her condition. 

The speech specialist also was impressed with Raygen.  She gave us some great tips on how to use Raygen's Ipad in a more conversation manner then for just "wants" and "needs."

Example: 

Me: "I like this game."

Raygen: "I like this game too."

Compared to:

Raygen: "I want this game." or "I need this game."

It is really hard to explain, but I recommend watching a you tube video on "Language Modeling."  It really puts it all in perspective.

Along with tips on how to use the device she also recommends:

a. Work on feeding more to help the oral muscles.

b. Enroll Raygen in preschool.

c. Find a speech/ot therapist.

d. Find a social environment for Raygen.

Do they forget about GERMS!!! 

Our preschool in our area isn't prepared to handle a medically fragile child like Raygen.  The preschool is not set up for developmental education.  It's nothing against our preschool, but they just are not capable of handling her.  I can't leave her alone there.  She is completely tube fed, she isn't potty trained, could easily choke, and she can't communicate. 

I'd have to be off my rocker to leave her somewhere. 

I just leave doctor appointments deflated.  On one hand I am so extremely proud of Raygen and everything she has accomplished so far, but on the other I am full of self doubt and I struggle if I'm doing everything I can for her.

Let's not forget Raygen has ABA therapy everyday from 8:30 to 11:30am.  So that only leaves the afternoon for other appointments.  Working full time, making time for my daughter Zoie and her barrel races, ABA, and everything else life may throw at me at any given day can really feel overwhelming. 

I don't always know if I do enough, but I do know that I do my best.  I know at some point I have to just know that is okay.  It's okay to not always run on overdrive.  My day starts at 4am and usually ends around 10pm.  I forgot what its like to sit down and watch a movie or read a book.  I wonder if I am the only Mom that goes to bed wondering "Did I do enough?" 

XOXO

Erin&Raygen

15-day Ready. Set. Run. Challenge
I know that my exercise routine really helps me stay sane.  I just signed up for the 15 day Ready. Set. Run. Challenge through IdealFit.  I love running and I am so excited to complete this program. 
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6 Years Ago...

6 years ago I sat by Raygen's bed rubbing her hand watching her heart beat through the yellow bandage. She spent 7 days like this till her swelling went down enough to close her chest. I believe in miracles because any parent who watches their child's heart beat and then 6 years later watch them run, smile, and laugh knows there is something bigger then ourselves in control.

XOXO

Erin&Raygen

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Update coming soon.  We've been busy with doctor appointments and I'll hopefully have time this weekend to fill everyone in on what we've been up to and learning lately about this special little miracle girl!

Midnight She is 6!!!!!!!!!!!!!

Midnight tonight this amazing girl will be 6 years old!!! I am truly blessed. I know I say that all the time, but I have watched my daughter go through so much in her six years that I fully understand how lucky I am that she is here with me, laughing, smiling, and dancing. Everyone always asks what’s next? More surgeries? or people believe she is "Fixed." One thing is for sure she will never be "fixed." She will always live with half of her heart or someone else's whole heart. I know how hard the thought of organ donation is, but I am one. I believe I cannot ask of others of which I would not do myself. I pray that Raygen can live the fullest of life with her special job, but there is always that thought in my mind that someday we may be looking at transplant. Remember we are asking a two-chamber heart to do the job of what is meant to be a four-chamber heart. Her half a heart does double duty 24/7. I am always so emotional on her birthday because I remember how it felt to have her taking away from me and rushed to Children's hospital directly after her birth. That wave of emotion is unlike any I have ever felt or wish to feel again. The one thing, if you want to do anything for Raygen on her birthday, is to become an organ donor. I know it is the greatest gift a person can offer to someone else and the hardest. Thank you to everyone who loves my daughter and prays for her. I can't wait to see what she does in her next 6 years. I have a feeling it will be amazing, just like her.

XOXO

Erin

GI and Strep Throat

Tuesday night was ballet and we had a great time.  Raygen is a social butterfly.  She may not follow directions, but she runs around the room happy and watching everything.  Raygen loves music.  Music makes her very happy and with mirrors on the wall so she can watch herself dance is the best!

Thursday was GI in Tacoma.  Everything checked out great.  Raygen gained weight and now is 38lbs and growing!  Some minor changes were made to her blend to add more grain, but  otherwise, we replaced her g-tube and were off. 

On the GI floor there is a beautiful mural and Raygen is always fascinated by it. 

It's wonderful the mural wall is there because it kept Raygen occupied so she wasn't running around being exposed to germs etc.  Raygen has a weak immune system so the littlest strand of anything picks up and it can turn serious fast.  A cold or strep throat, like Raygen is battling now is a lot harder for her then a normal, healthy child.

Raygen woke up Friday morning screaming and acting very unusual.  She would cry then do a weird jerking movement and it continued to get worse.  I was so scared and knew something was wrong.  So I immediately started to get her dressed with one hand while the other was calling the doctor's office.  I was able to get her in at 9am so I rushed her out to the car and headed out.  I knew she had a temperature because she was hot to the touch and even her feet were hot and Raygen never has warm feet.  The doctor took one look at her and agreed Raygen looked like she didn't feel well.  She had a temperature of 101.6 and one look in her throat the doctor said "Yep, it's strep."  Raygen's tonsils and the back of her throat were red and swollen.  Raygen was prescribed a antibiotic and then we headed home and loaded up on Tylenol and Ibuprofen.  Today she is doing good as long as I stay up on the medicine.  Her fever did come back last night and so far today she's been pretty happy.  Hopefully by tomorrow she will be over the hump and back to feeling better. 

Before the IPad she loved her little TV.  Here she fell asleep watching Sesame Street. 

Raygen's first trip to church. 

Our chunky little baby.  Where did she go? 

Her first picture outfit.

Raygen's birthday is fast approaching....March 23rd and this girl will be 6!!!!

XOXOX

Erin&Raygen

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God's Beautiful Creation

My beautiful friend took Raygen's pictures last weekend and I am absolutely in love with them.  It is so amazing to look at my daughter in these pictures and realize how lucky I am.  She is the picture of hope, prayer, strength and courage.  God blessed her with this life because he created her strong enough to live it.  I was blessed to be her Mother because God has a plan for me that I did not see for myself.  I don't try to question God's plan anymore.  I think I have determined that it will always be impossible to know the "whys" till he wants us to know.  Instead I just accept and be very grateful.

These pictures reminds me that I need to make more time for my children.  I get so caught up in work, my fitness, my food, doctor appointments, therapy, and just everyday life and there are some days I wonder if I sat down and played with Raygen at all.  Those are nights that I crawl into bed with her (she sleeps in a twin) and hold her. 

I know that there is no "perfect mom" out there but, if any child deserves one it would be Raygen.  She has fought so hard for everything.  She continues to fight daily for things that come so easily to every other child and yet she does it with a beautiful smile on her face.  The truth being, Raygen knows no different.  That in itself is an amazing gift. 

My daughter is so funny.  Can you believe with frosting, cup cakes, cookies, flour, sprinkles and several other party favors on the table we could get not get her to smile.  If there is one thing that could be said about her, it would be that she is stubborn, especially in front of the camera.

I see perfection.  God's beautiful creation.  My beautiful creation.

Even tossing flour couldn't get a smile :0).....Stubborn!

May I look at this picture, my favorite, and remember how lucky I am.  I want to stop and be in the moment.  Live in this moment with my daughter.  I want to read books to her, play with her, and watch the beautiful smile everyday.  I don't want any more days to go by and wonder if I spent any time with Raygen.  I want to quit obsessing over my issues and remember that my life now is my children and that is what I always wanted.  It just seems so funny to stress so much about a number on a scale when I have this little girl to hold on to.  She doesn't care about anything other then me being there, in this moment with her.

XOXOXO

Erin&Raygen

Everything but the kitchen sink...

So every morning I have the same routine.  I get up before the family and workout for an hour which is usually 30 cardio and 30 weights.  Then it's shower and start packing for the day.  I make Raygen's blend and food prep for myself the night before to make this a smooth routine for me and it allows me a little extra time in the morning.  It takes a lot of pre-planning to make our day successful for both Raygen and I.  Raygen needs a lot to travel, more than most kids, so it is very important that I don't forget anything because it's not like Walmart sales feeding tube supplies.  I make about two trips to the car to get everything we need.

1.) Cooler with Raygen's blend

2.)Diaper bag with normal supplies: Diapers, wipes, extra clothes. 

3.) 2 I-Pad's and chargers

4.) My purse (There have been several days I've forgotten this.)

5.) Since were potty training now we have the potty that will travel. We also have a potty timer that goes off every 45 minutes right now so we don't forget to take Raygen to the potty.

6.) My IdealFit tote that has all my food for the day , Ideal protein bars and Raygen's syringes and meds, paper towels, and extra water for Raygen.

7.) This day I needed my Buzz N Bloom Coffee

8.) My IdeaFit BCAA's in my water bottle.

9.) Most day's there is usually my running bag :0)

10.) Raygen's favorite toys at the moment.  PJ Mask, Minnie, and Daisy are the winners this week.

The thought of leaving the house used to scare me.  Trying to remember to have everything was so stressful.  I would literally loose sleep going over my list making sure I had everything together.  Today it's a piece of cake.  I have a routine and I know what I need and have placed extra supplies in the car and my office.  I'm not perfect and I do forget things, but I don't panic and I don't loose sleep.  I just do what I can and being prepared is the first step.  That goes with my fitness too.  I've struggled with my weight and with food issues, but meal prepping has been a life saver.  It just goes to show you when your prepared you've set yourself for success.

My first step this year is starting Trainer Lindsey's 6 Week Body Sculpt. 

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I printed my E-Books off yesterday and just received my confirmation email that my Mint Chocolate Protein is on it's way.  That's my favorite flavor, but there all good.  I can't wait to get started, but first I'm taking my time to prepare.  First, I need to choose my plan, pick my meals, shop, and then get started.  If you set yourself up for success then you can't fail.

XOXO

Erin&Raygen

Fear is Your Only Enemy

I came across these 3 pictures the other day of holding Raygen during the first week of her life.  This is the only time I held my daughter without scars.  She was perfect in every single way.  If she wasn't in Seattle NICU or attached to an IV pole and so many monitors and wires you'd think she was perfectly healthy.  From the outside in she was perfect, but from the inside out she was in serious danger. 

Joshua 1:9Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. (NIV)

I can not put into word exactly how I felt during this time period of Raygen's life because I was on an emotional roller coaster.  I had just given birth to a daughter that I was terrified I would never bring home.  Fear gripped my insides like a press.  Squeezing me harder each and every hour.  I was so extremely scared to love her and even more not too.  Too be honest I loved this little girl since the moment I knew I was pregnant, but holding her, knowing within days she was going to have major open heart surgery and may not survive made me ill.  I hardly slept, ate, or left her side.  I tried to spend every single second with her.  At the same time I was so scared I made myself sick with anxiety and felt horrible.  I cried constantly and I look back on this time as one that I wish I could fast forward through.  The emotions that it brings up are hard to deal with even to this day. 

Deuteronomy 3:22Do not be afraid of them; the LORD your God himself will fight for you. (NIV)

Being in the hospital made it hard to truly bond with Raygen because she had a full time nurse who cared for her, plus it was best if she wasn't held that often to protect all her iv's and equipment she was attached to not to be disturbed.  But I held her as much as they would let me.  We slept in a little sleeper room upstairs and carried a pager around constantly.  I will never think of pagers the same way again.  The few times ours went off we would sprint from wherever we were to our daughter praying she was okay.  We would call down to the nurses at all hours of the night to get updates or if anything changed they called us.  We never wanted to be away from Raygen more then a few hours to rest so Randy and I were always exhausted. 

Philippians 4:13I can do all this through him who gives me strength. (NIV)

Fear was and is my constant enemy.  Fear tries to stop me from enjoying life.  Fear likes to control me.  Fear tries to take the joy out of every moment. Fear will always be my enemy.  Why?  Because I'm a heart mom.  I try my hardest to live day to day and not think about all the "what ifs," but I'm a worrier and she's my daughter. 

 Isaiah 41:10So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (NIV)

We were told during our 20 week ultrasound that there was a possibility something was wrong with Raygen's heart.  I look back now and can tell you it was one of the best and worst days of my life.  The joy of knowing I was going to have another little girl and the grief that something was wrong.  It was a long two weeks later that we were given the devastating news that Raygen had HLHS, or half a heart. 

It's probably hard to believe this girl is almost 6 years old and has undergone 3 open heart surgeries.  That is 3 times her heart has been stopped, placed on bypass, and restarted again. 

Deuteronomy 31:8The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Deuteronomy 3:22Do not be afraid of them; the LORD your God himself will fight for you.

I have included Bible verses because they are what I turn to during difficult times.  There are no words to say to a parent going through a serious illness with their child.  God always knows what I need to hear.  What I need to be reminded of.  I hope you find comfort in them as I did. 

Okay so when I'm stressed (lets say that's about every day) I crave chocolate like there is no tomorrow.  So I was so excited that IdealLean turned my favorite smoothie into a protein bar.  Mint chocolate protein bar is going to be on my "must" list.  This will be an awesome way to satisfy that chocolate craving and not totally ruin my diet for the day.   Right now the mint chocolate protein bars are on sale!!  There only $14.99 a box.  That's a savings of $15.00.  If your like me and need a little treat on stressful days, or everyday, I recommend these.

xoxo

Erin&Raygen

Heart Month or Heart Life

When I think of "Heart Month" I don't get too excited because honestly it's not just a month for me.  Every month of the year for the rest of my life will be "Heart Month."  This isn't denying that devoting the month of "Love" to bring CHD awareness is bad thing.  It isn't.  Its just that I used to go all out for heart month.  I'd post every day, run ads in our local newspaper, sale raffle tickets for baskets that we'd put together and then this year I stopped.  Not because I don't want to bring awareness because I do, but because I felt like the only thing I was doing was putting more stress and pressure on myself.  Like the world of HLHS depended on me posting and talking about CHD everyday.  I felt like I was letting Raygen down if I wasn't trying to get her story out there.  I felt as a heart mom I wasn't doing my part if I didn't post every day, but in truth, the only person I was letting down was Raygen.  I would get so into posting about Raygen that I would forget to enjoy her. 

Heart Month is important, but really I don't see too many people talking about how our hearts really work.   You always hear things like: "You have a big heart," "His heart is two sizes too small," "You make my heart happy," "Your my heart," etc.  This is probably how most of us think about our hearts.  It makes me laugh now because before Raygen that was my train of thought as well.  Now when I think of the heart it has nothing to do with feeling.  It has to do with function.  Not the make believe thought that our heart is only there to feel "love" or be "broken," but a organ in our body necessary for life.  If only our heart was just responsible for feelings.  Our heart, my heart, your heart is responsible for pumping blood throughout the body via the circulatory system supplying oxygen and nutrients to the tissue and removing carbon dioxide.  Not what you want to see on a Valentine Card is it?  Now most of (unless your the 1 in 100) have a normal heart that does this with 4 chambers.  Raygen on the other hand does not have 4 chambers she has two.  Raygen is missing her entire left side of her heart.  The left side of the heart is responsible for pumping oxygenated blood into the aorta, the large artery that carries blood to the body.  Raygen's two chamber heart will now be responsible for a four chamber job.  Sounds frightening doesn't it?  Well it is.  The right side of her heart will now be responsible for  what is usually the job of the left side by pumping the oxygenated blood to they body.  Her deoxygenated blood will flow from the veins to the lungs without passing through the heart.  I know it's complicated and probably too much information but it's like asking two men to guard 500 prisoners.  It's a big task your asking and failure isn't an option.

I know that the only way awareness for CHD or any medical condition that needs support is spread awareness everyday.  Not just the doctor appointment or the statics, but the everyday life because that is the truth.  The truth is being Raygen's mom is the most rewarding and scary experiences in my life.  I can fix most anything that needs to be fixed.  If I can't fix it I know who can, but when it comes to your daughter's heart that is completely up to God.  My hope is spread awareness everyday.  Celebrate Raygen and her heart everyday.  Not because I feel the pressure or feel like the world will forget all about HLHS if I don't talk about it, but because I feel that Raygen is a inspiring little girl.

XOXO

Erin & Raygen

Dentist Check-Up and Cardio

So Raygen and I had a very busy week.  It started with a trip to Seattle Children's for a dental check up.  The Dentist at this point is no big deal because it is only a look and discuss.  Since Raygen has never really eaten by mouth she really doesn't have dental issues.  She still has a lot of oral aversion so a cleaning is just out of the question.  From what the dentist was able to see Raygen has no cavities!  The dentist also told me Raygen is missing two of her eye teeth (I think that is what they are called.)  Since the baby teeth are not there she said it is most likely there will be no permanent teeth either.  However, before we left Raygen was placed on the waiting list to be sedated to have her teethe cleaned and  have sealant placed on her permanent molars.  I'm not looking forward to this, but I do think it is important to keep Raygen's teeth healthy as possible.  At some point I pray it will be possible to have her teeth at least cleaned without be sedated.

Raygen and I celebrated after the dentist by going to the Disney Store.  Let's just say I would have spent the entire day with her there, happily, watching her run around and explore.  She was in "awe."  We left with a Minnie, Daisy, Belle, and Sleeping Beauty.  I would have bought the whole store for her if I could :0) 

Thursday we had a big day at the cardiologist.  Its been 6 months since her last check up so I was a little nervous.  Raygen had to have blood work, x-ray, echo and an EKG.  We were lucky the blood draw was done with one poke and the x-ray was quick.  Raygen did awesome during her echo only crying right at the beginning, but then remained calm and they were able to get a really pictures.  Usually she screams the entire time during the EKG (she hates the stickers) but this time she was such a big girl and didn't cry at all.  It was the best EKG she has ever had if you don't count when she is sedated :0)

SHE IS DOING AMAZING!!!!! ....

words straight from Dr. Park's mouth.  What a relief.  I am so very grateful that Raygen has remained so healthy and strong.  We will go back in 6 months for another check up and then Dr. Park mentioned going to once a year.  I don't believe I am ready to have her heart checked only once a year, but it does show how well Raygen's heart is doing if her cardiologist brings it up.

Thank you to everyone who loves and prays for Raygen.  It is truly by the grace of God and all your prayers that Raygen is the happy, beautiful, amazing little toddler she is.

XOXO

Erin & Raygen

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