Five Months Ago Today

Just five short months ago today, on the 29th, Eden was born.

What a bitter sweet day it is for me as I think that she would be 5 months old today.  I know that she is in a better place for her and she is free of all pain and struggling, but oh how I would love to have her with me now to hold, hug, kiss and cuddle.  I remember the day so well, it was a Friday, the 29th day of February.  I was scheduled for my third c-section and I thought that leap day was fitting for our Eden.  I was so nervous and apprehensive heading to the hospital.  What would life be like with a child with Down syndrome?  How would my life change with her in it?  I never once questioned or worried about the heart defect.  Eden was born at 2:19 pm and she looked marvelous.  Her color was fabulous and she never required oxygen.  Her tone was also very good considering her DS.  There were a number of doctors and specialists attending to her at first, but once they realized that she was "good to go" they sent her to my room.  I didn't realize it at the time, but now I cherish the three days we had together to just be a mommy and her baby.  She latched on immediately and breast fed like a champion.  She loved her binkie and never cried at all.  She was small at 6.6 pounds, but I loved holding and hugging her.  My favorite thing was her newborn smell.  I love the way babies smell!  All of my fears and trepidation left me the moment I laid eyes on her.  It has been special with all of my children of course, but I really could feel a very unique and special spirit about Eden.  It was intoxicating and so soothing that you longed to be close to her.  That special spirit and the feelings it carried never left her.  It was not until the day we left the hospital and went to our cardiology appointment that we realized the magnitude of her heart defect.  Eden, I love you so much and I am honored to be your mother.  I miss you every day and you are ALWAYS in my thoughts.  I will never be the same because of you and yes, my life has changed forever.  I will forever thank my Father in Heaven for sending you to our family and allowing me to love and cherish you for your short time one earth.

Looking back at my photos, I thought you would all like to see if my girls looked alike at birth.  Keep in mind that I do not have a good newborn photo of Emerson because she was ilfe flighted from us to Phoenix Children's for her surgery.  For those that do not know, Emerson was born with something called a Tracheoesophogeal (TE) Fistula.  Basically, her esophagus did not develop properly.  It is supposed to grow down from the throat and up from the stomach and meet in the middle.  Well, Emmy's grew down from the throat and stopped and the piece that grew up from the stomach hooked onto the trachea.  Therefore she was not getting anything into her stomach and would aspirate any of the saliva that she swallowed.  This was discovered minutes after birth and she had her life saving surgery when she was one day old.  She has a small incision on the side between her ribs and recovered in no time.  She is healthy and happy now and hasn't looked back since.

You be the judge, who looks like whom?

My sweet Ainsley moments after birth.  The ironic thing about her is that I do not have a newborn photo of her with her eyes closed because she never closed them.  This was her all the time, bright eyed and taking it all in.  Her eyes still captivate me.

This is my Emerson right after birth.  Notice the red hair!  She still holds her hand like that when she sleeps.

My blessing Eden.  Doesn't she look radiant?!?  I just love her little button nose and her beautiful lips.

I also made a decision yesterday and purchased the heart ring I have been shopping for to honor Eden.  I plan to wear all the time on my right ring finger so I wanted it to be something practical, yet perfect.  I think I found just the right thing.  The girls loved it as well.

In the Cool of the Pines

Our weekend in the pines.

So thoughtful and thinking she's so big at 2 years old.

Dad in his element, but the girls are done exploring as you can see on their faces.

My joy, my family!

Ainsley is feeding the horse an apple. Emerson just liked observing, not feeding.

Mommy and Ains prefer chocolate, while daddy and Emmy like vanilla. YUMMM!

Ohhh, the lazy days of summer with your sissy.

Despite all of the dirt, my girl is going to be a freckle face like her mommy.

Now that is a BIG cup of cocoa and yes, Ainsley ate almost all those donuts!

At the end bottom of Tonto Natural Bridge.

So beat! Notice that Emmy is like her mommy and takes her half out of the middle.

Our family went on a much needed mini-vacation up north this weekend and we had a wonderful trip. We left on Thursday morning, with me still recovering from a bout of the stomach flu that the girls so lovingly gave to me, and stayed until Saturday afternoon. Thankfully I was feeling back to my old self by Friday and didn't require any more Pepto Bismol. We took a ton of walks to go exploring and it was so fun to see the girls excitement at every bug and creature they encountered. One of those walks was at night with our flashlights. We also went on a short hike on Friday to Tonto Natural Bridge, which is literally a natural bridge with pools beneath. This was the girls first real experience with hiking and they did a stellar job. Ainsley decided that she likes hiking more than exploring and Emerson was just happy to be finished so we could have lunch. We made friends with some nearby horses and fed them carrots one day and apples the next. We also went on a drive and stopped dead in the road to examine a tarantula spider. I had told the girls stories of when I was a child and my mom picked up a tarantula on one of our vacations so it was "big time" for them to see one and actually see how big they can be. They acted so brave kneeling close to it to get a better look, but when it almost crawled on Ainsley, the screams began. Gotta love girls! We also drank lots and lots of hot chocolate and ate far too many tiny powdered donuts. We even shared milk shakes every day at a local 50's diner. All in all it was a super family get away and Marcus and I enjoyed so much just being with the girls. Ainsley picked so many wild flowers while there and just before we left yesterday so said that she wanted to take her little bouquet of purple flowers to Eden's grave. What a thoughtful sister as I didn't think of even stopping at the cemetery. We stopped at the cemetery so she could place the flowers and the girls told Eden all about the weekend, with the spider taking center stage. It's so hard to figure out the balance between keeping Eden a part of our family conversation and not mentioning her as much for the girls sakes. It is still so hard for Ainsley to understand that she is dead and will not be coming home to our house so we hesitate to talk about her death and bring her up too much. As we left the cemetery yesterday I told Ains to blow Eden a kiss and after she did she said, "it's not the same as giving her a real kiss. I wish she could be all better and come home to live with us because then I could give her real kisses." That broke my heart as it's so hard for her and it seems so unfair for her to have to deal with this at only 3 years old. We have decided to take weekend adventures for the next three weekends so it's "a camping we will go" next week.

I find it hard to think of what to write about now that our journey with Eden has ended. It seemed like that was all I focused on and now I am at a loss. However, when I really thought about it, I have so much I could talk about as I still have two beautiful little girls who amaze and delight me daily and five chickens that frustrate me and one husband who is the love of my life. I am so blessed so I will share it with anyone that will read. We love you all and you have changed our lives forever. Thank you!

My Heart is Full

I am very happy today because I have someone to take Eden's milk.  It really seemed to work out perfectly.  Some may say coincidence, but I tend to think that other powers were involved.

First, I would like to thank everyone for their wonderful suggestions.  They were all so appreciated.  Many of you have heard me comment about Eden's special friend Bela.  She was born the same day as Eden also with a heart defect and a chromosomal disorder called Turner's syndrome.  In my comments I tell everyone that the Tanner and Avery Milne and Bela are friends or our.  They are now, but we really did not know each other at all until last fall.  The ironic thing is that they live about 5 miles from our house and we learned of each others situations while still pregnant from our husbands.  Marcus and Tanner at the time were business acquaintances and I would get all of my updates through Marcus.  Since Eden and Bela were born (you can link to her blog from mine), Avery and I have only kept in contact through our blogs, but not a day went by that I did not think of Bela and how she might be fairing.  Like Eden, Bela has a very complex heart defect and each day with her is cherished.  It was not until Eden's memorial that I met and hugged Avery for the first time and how sweet that moment was.  We were like old friends reunited, but we'd never met.  Funny how one situation can bring people so close together.  Anyway, right after my post yesterday about my milk, Marcus received a text saying that Avery would love to use the milk for Bela.  I was honored!  As Avery and I talked this morning she said that she had wanted to call me over the weekend and ask what I planned to do with the milk but thought it might be a touchy conversation.  As I can relate, it is not easy to care for other children and a sick baby and pump enough to maintain an adequate supply for feedings.  Bela can not breast feed or take a bottle any longer because of aspiration and growing issues so she gets all of her milk through her feeding tube.  It works out perfect that as Avery is coming to the end of her supply, I have plenty to offer.  You have to wonder if Eden wasn't looking out for her special "forever" friend Bela.

Some people may think this situation strange, but I feel so blessed that I can help another family who has come to mean so much to us.  Every ounce of milk I have was pumped with love and I know that Bela and her family will be grateful.  Today is a good day!

No Milk Shortage Here

Please help, I am really at a loss right now as to what to do with all of my breast milk.

I think it would be a tragedy (at least a personal one) if I threw it all away, but what do I do with all of it.  Let me tell you that I literally have half of my deep freeze full of bags of milk and each bag has between 6-9 ounces in it.  I know there are organizations I can contact that will take it, but I guess I am thinking more on a personal level.  At the same time, it might be a little uncomfortable for someone to take another mother's milk.  Suffice it to say that I would have been the premier wet nurse in that time.

What a week we've had at our house.  I continue to feel the love of the Lord and you all so close to me and I am so thankful for that because it scares me to think of when it will be gone.  There are moments in the day when I feel Eden's spirit very close to me and I cherish those times as they are fleeting.  I have learned to really enjoy my personal "quiet time" when I can just sit alone and ponder on life and feel the Spirit and feel loved.  It is such a wonderful break.  We are all familiar with the old saying "life goes on," and oh how true that is even when you don't want it to.  It seems like sometimes I just don't want to move on and let time start to heal, but it is inevitable and I sure welcome it at other times.  I still have all of the flowers on the kitchen table, yes they are all dead, but I can't throw them out yet.  Baby steps for everything.  I also have moments when I think that I would like to dig her up and just look at her one more time.  I know this sounds crazy, but I think it's all part of the reality setting in.  The girls are doing well, but they ask questions once in a while and Ainsley started crying in the car yesterday because she was sad "that Eden would never ride in the car with us and live in our home."  As adults we struggle sometimes with wondering why God didn't answer our prayers, but this has been very difficult to explain to our girls and their little cousins.  We teach our children that if they are sick or need help, they can pray and Heavenly Father with help them or in essence, make it all better.  More than once they have asked why He didn't make Eden better when they prayed for her to "get healthy" every day.  Being a parent in these moments is challenging because it's so important to say the right thing and I don't know if I do all the time.

My older sister, her husband and her three children were in a serious car accident on Wednesday, the one week anniversary of Eden's memorial.  I was getting ready and thinking about the last weeks events when I received a call that my sister was in the ICU with head trauma.  Long story short, they were t-boned by a driver who ran a red light and she ended up with staples in her head, a brain bleed and fluid around her heart.  She is pretty beat up, but doing really well and home now.  No one else was hurt at all.  It was a scary 24 hours and I remember my first thought after the phone call was to Eden that she take care of my sister.

Marcus took me away for a couple of nights while the girls went to Grandma's for a sleepover.  We did not leave the valley and were not even that far from home, but to be in a resort away from home is like a vacation no matter where it is.  We have a friend who owns a nice golf resort locally and they were kind to offer two nights to us.  Marcus and I had so much fun spending two days together shopping, eating out and watching movies.  I am on the hunt for a heart ring to wear on my right hand in honor of Eden.  I've found a couple that I like, but can't make a decision.  

We returned home last night to find a darling little ficus tree on our front porch and a bouquet of plastic flowers in our bush.  You will never know how it lifts our spirits to feel the love and kindness from so many.  We know that we are truly blessed.  The storm has passed, but picking up the pieces can be so very difficult and each act of service puts another piece back together.  Thank you!

Gotta Love Pictures!

I hope you enjoy the photos. The first three are dedicated to my best friend and hubby for our anniversary. The remainder are from the services.

Me and Marcus in 2007 after hiking to the peak of a 14,000 foot mountain in Colorado. We LOVE to hike!

Me and my sweetheart enjoying a kiss at the cemetery. Anytime is a good time for a smooch.

Me and Marcus in San Francisco in 2007. We rented a tandum bike and road across the Golden Gate bridge. Great memories.

Ainsley made this "replica" of Eden on the fridge. It was the day she passed and Ainsley wanted to make it so that if we ever wanted to see Eden we could look at the fridge. Notice that her ears are her little hand prints.

One of many helpers at the memorial made a wonderful table with all of Eden's blankets and stuffed animals from the hospital. We also had a few of our favorite photos on display.

My sweet Ainsley looked just radiant at the cemetery. I know that daddy will have his hands full when she gets older (anyone that knows her can vouch for that!)

The Ridgway family of five. Not the way you want to be photographed, but what a proud wife and mother I am.

A casket should never be this tiny. It was a very lovely casket and the flowers were beautiful.

The family casket bearers, from left to right: grandpa Bryant (Marcus's father), uncle Denis (Marcus's sister's husband), uncle Dave (my older sister's husband), uncle Jake (my younger sister's newlywed husband), and Papa (my father).

We were given so many gorgeous flower arrangements and they are brightening up my kitchen to this day. You can also see one of the girls lambs. We put one just like it in Eden's casket.

Thank you for your continued kindness. I feel the Lord's love through you and I thank you.

The Best of Times, the Worst of Times

I guess that is how I feel from moment to moment.

There are really wonderful times in my day when I feel the Lord's love more than ever, and then there are times when it is so difficult and I just want to curl up and cry (which I normally do.)  It is sometimes tough for me to see other mommies with their little babies and not get emotional.  There are times when I don't really want to talk to anyone and I don't want anyone to know, but there are other times when I would tell my story to the grocery clerk if they would listen.  I also have moments when I want to carry a sign that says something like "I really have three beautiful little girls, one just returned early to Heavenly Father," or "I really am the mother of three and we are a family of five!"  Normal feelings I hope.  I see other mommies get so frustrated and frazzled when their baby cries and my thought is, "what I wouldn't have given to hear my Eden cry, just once."  I don't know if I ever mentioned this, but we NEVER heard our little angel cry, not even her first three days with us when she seemed so healthy.  She was a total angel then and just ate and slept.

I realize now just how the Lord blessed me with her birth.  Most infants with as serious of a heart defect as Eden had would have been rushed away right after birth, but not Eden.  Since we did not know yet just how grave her condition was, she was able to stay with me in my room for three whole days.  As I recovered from my cesarian section, she slept next to me.  I had the wonderful blessing of being able to breast feed her for three days, change her bum, hold her close and kiss her tons.  I hold that time very sacred now and will forever cherish that tender mercy from the Lord.

The continued outpouring of love and support amazes and strengthens me.  I am so thankful that so many of you are still willing to listen, talk and help when needed as I do not feel at all ready to brave this alone.  Thank you for the sweet cards, memoirs, flowers, notes, chats, dinners, and just plain love.  Amid my pain and sorrow, I feel so thankful for each of you and I know that I am blessed.

I will post some wonderful photos of Eden's services soon.  I am having trouble getting them uploaded right now.

On another note, I want to thank my wonderful husband and best friend for 5 fabulous years of marriage.  I failed to mention that we celebrated our five year anniversary on Friday the 11th.  Boy have we had some wild rides, but I would not change anything and I can do anything with you by my side.  Thank you Marcus.  I love you!

The Morning After

As with most experiences and challenges in our lives, there is always a morning after!

Despite how painful it is and how much it hurts to have our sweet Eden pass away, Wednesday's memorial service was a most lovely, beautiful tribute to her life.  It continually amazes me the impact one small baby had on the lives of so many.  I have asked myself countless times since her passing, "Do I live my life in a way to impact other people as my Eden did?"  There were over 300 friends, family and acquaintances in attendance and I think that all there were able to feel of Eden's sweet, valiant spirit.  It was so hard to see her small casket and kiss her soft cheeks for the last time, but I know that I will see her again and that I will always be her mommy and that gives me strength to get through each day.  The days following her death are somewhat of a blur and for those who have lost someone close to them might remember, I felt like I was wrapped in a warm, cuddly blanket and I have no doubt that feeling was the Lord pouring down His love on me.  I keep praying that the Lord will not leave me alone yet as I am not ready to stand on my own.  

I could not believe how much there was to plan for the services, but it was nice in a way because it kept us occupied without too much time to get lost in our thoughts.  Yesterday however was different.  I woke up with no agenda and no planning and it was rough.  I still walk around in a fog most of the time and I have never been so indecisive in my life, but one day at a time is all I expect of myself right now.

It was a beautiful day on Wednesday, hot, but that is normal for Arizona in July.  There was a slight breeze though that made sitting outside at the cemetery a little more bearable.  We started with a small family viewing and a family prayer.  We gave each of the grandparents a moment to share their thoughts at the viewing and that was so special.  We also spent just a few moments with Eden with just our little family.  Each of the girls received a new, white lamb as a gift and we put Eden's in her casket with her.  The girls also gave her a nightie (blanket) and a binkie.  I wrote her a note and gave her a ring that my mother gave to me when I was a young girl.  Marcus wrote her a letter as well and gave her a beautiful crystal three heart pin that he pinned to her dress.  We had her dressed in a pure white dress with white tights and little white booties.  She also had a lovely white hair bow and a pearl bracelet that one of our dear friends made for her.  She truly looked like a princess!  She was wrapped in a white blanket with her name and birth date embroidered on it.  I will never forget how absolutely wonderful she looked.  We then went into the church for her services.  I have included the programs for all to see.  They printed half with one photo and half with another as I couldn't decide between the two.  After the memorial we greeted and thanked everyone and headed to the cemetery.  Once there we had a short graveside service where Marcus said a prayer to dedicate the grave.  We also had 50+ white helium balloons with silver strings prepared and each person at the grave held a balloon and we let them off all at once.  As you can see from the photos, it was such a special experience and beautiful sight.  We wanted to shift the focus from the casket and grave upward to heaven.  We spent the remainder of the day with family and friends.  The day was not without it's crazy moments.  Emerson woke up that morning with diarrhea and vomiting.  She also had a fever.  Poor girl was a bit miserable all day as we drug her from event to event.

I am overwhelmed by the love and support we have received throughout the last week.  Thank you all for your sweet comments and kinds words.  They uplift us and strengthen us and when I have moments of heartache I read them for comfort.  I wish I could send each of you a personal thank you, but please know that we love you and thank you and you will forever hold a very special place in our hearts.

MEMORIAL SERVICE

Dad Here - 

We would like to invite everyone who has been touched by Eden to her memorial service.

The services will be on Wednesday July 9th, 2008 at 9:30 am.  The location is 7145 E Monterey Ave.; Mesa, AZ. 85209. 

Below is a map of the location:

Following the services we will proceed to the GREEN ACRES CEMETERY at, 401 N Hayden Rd; Scottsdale, AZ 85257; Phone (480) 945-2654

We would ask in lieu of flowers that donations be made to the following:

PHOENIX CHILDREN'S HOSPITAL - HEART CENTER

On Behalf of Eden Grace Ridgway

2929 E. Camelback Rd. Suite 122

Phoenix, AZ 85016

Again, we thank you all so very much for your love and kind thoughts.  It has been so therapeutic to read your kind words on the blog and to feel of your love.  We feel we know so many of you, that you have made an eternal lasting impact on our lives and we are now kindred spirits.  If any of you are able to make it to the service, please come up and introduce yourselves so we can meet you and you can feel of our love.  We also would like to extend an open invitation to attend a luncheon following the cemetery internment back at the memorial service location.  We would love to chat and take time to celebrate the love and impact for good that one little girl has had in our lives.

Although difficult, this has been an amazing and beautiful experience.  We are honored to have been given the privilege of carrying out the will of our Father in Heaven, for being entrusted with the care of this valiant and noble daughter of God and for being able to plan and celebrate her memorial services.  

EDEN GRACE, what a perfect name for a perfect little girl.  I will be forever grateful to the Lord for sending little Eden to our family.  She has been nothing but a great blessing to our family and I have learned so much from her and I am a better person because of her.  Oh, how I miss her terribly, my little girl... this has been more difficult for me than for Keisa, but with her support and love I will make it.

We will chat with you soon and look forward to meeting all those who can attend.  May God bless and keep you safe.

I Like To Look For Rainbows

Dad Here - 

At 1:31 am on July 5th, Eden Grace Ridgway passed away.  She was surrounded by those who loved her most, I was blessed to hold her and sing to her my favorite primary song as she passed from me, her father on earth, to her Father in Heaven.  

I like to look for rainbows whenever there is rain

and ponder on the beauty of an earth made clean again.

I want my life to be as clean as earth right after rain.

I want to be the best I can and live with God again.

I know when I am baptized my wrongs are washed away

and I can be forgiven and improve myself each day.

I want my life to be as clean as earth right after rain

I want to be the best I can and live with God again.

We called grandparents to meet us at the hospital and around 11:00pm on July 4th we gathered in her room.  We started with a prayer by Keisa's father after which my dad gave me a Father's Blessing.  The three of us (Paul, my dad and me) then gave a blessing to Eden.  In the prayer I blessed her and released her from her mortal body so she would be free from pain and suffering, to live in peace with God until we are all reunited once again as an eternal family.  We then started to disconnect some of her medications but left those that would keep her comfortable and pain free.  All of the grandparents took turns holding her after which Keisa and I held our little girl for a time.  When it felt right, Keisa handed Eden to me and we extubated her and she quickly passed gracefully and beautifully in my arms.

The Spirit in the room was amazing and we knew what we had done was Father's will.  It was so difficult to see our baby girl leave us, but we know it will be for a short time in comparison to eternity and that we will see her again.  We were so happy she was no longer in pain.  She had reached a point in the evening that it was becoming increasingly difficult to keep her comfortable because of her condition and everyone knew it was time to let her go.  

We arrived home around 4:00 am and were soon awakened at 6:00 am by our early riser, Ainsley. It's nice to know that the world keeps turning and things continue on regardless of what we are going through.  We are so tired yet we have so much to figure out.  We know that through the Savior's Atonement we are comforted and strengthened. We feel this now more than ever before in our lives and are thankful to know that the Plan of Salvation is real.

We will post more later, but I want to again thank everyone for their love and concern for our family.  We commented on the amazing number of people that have been touched and have offered prayers for our family.  Please continue to keep us in your prayers as we are now coping with the loss of such a precious girl.  There was something special about this one and I wish all of you could have experienced her amazing spirit.  We will truly miss her, but know she is where she needs to be.

Letting Go

Dad here - 

Thursday we received a call from Dr. Pearl that he wanted Keisa and I to conference with him at the hospital, a phone call we were hoping wouldn't come.  The last few days for Eden hadn't been the best and she just wasn't getting better, so it was now time to make some decisions. When we arrived at the hospital and Eden looked horrible.  She is retaining so much fluid that it is seeping out her nose, eyes and she is "bubbly" out of her mouth.  Her skin is so tight now that she is oozing drops of fluid from her old needle marks.  As we spoke with Dr. Pearl he made it very clear that we have reached a point of few options.   She is now in kidney failure and is becoming quite toxic so they have her on a peritoneal dialysis.  This is where they fill her abdomen full of fluid and then let it drain in hopes of "pulling" more fluid out than they put in. In addition to this they are trying one last medicine (norepinephrine), a very powerful drug, to see if they can get her to recover.  

Dr. Pearl also started to map out a plan to assist Eden's passing, a conversation that I had hoped would never come.  We spoke about letting all the medicines except those for pain naturally run out and then removing the ventilator as the last option.  We were told that doctors do not have these types of conversation unless they feel the end is near and there is nothing more that can be done.  Needless to say, we left the hospital Thursday emotionally exhausted and faced with many difficult decisions.  

Keisa and I spoke thru the night about our blessings and Heavenly Father's plan.  We contemplated the questions we have been asking about letting her go.  We cried and held each other and I thought to myself how blessed I am to have this woman in my life, what a strength she has been to me in my life and how she is the fulcrum of our lives.

Prayer is communicating with Father in Heaven and it is real, I know this.  This being said, I think asking the right questions of Heavenly Father is essential as is listening to the answer and acting upon it.  I've been wondering for a while if I've been asking questions for something I already have the answer for.  Maybe the question isn't, "should we let Eden go?" but rather, "when ?"  

Friday morning we went back to the hospital to spend time with Eden.  She has had slight improvement, but nothing significant and more a result of the short time affect of the norepinephrine.  The mood has changed in the room.  The nurses and doctors have been so great but all realize we are nearing the end.  Despite this there is a peace and a special spirit in the room that is difficult to explain.  As hard as it is, I know Eden has put up a valiant fight and she is a choice spirit from Father in Heaven.  

Keisa and I believe strongly that having children is a partnership with our Heavenly Father. When we have children we become co-creators with the Father:  He created the spirit and we the physical body.  In doing this, we engage in one of the most sacred and spiritual responsibilities we will ever be involved with in our mortal lives.  Understanding this special relationship with Heavenly Father, how much more sacred and spiritual is working in unison with the Creator of our souls in allowing a choice spirit of Father in Heaven to return and live with Him?  

I don't know if I have the strength to let her go, but we know that we must do the will of the Father.  I thought about it more today than ever before, is there a difference between merely doing the will and carrying out my Father's will?  Keisa and I both believe we are not yet like Job, nor Joseph, but the burden the last 24 hours has been great.  We ask for your continued prayers as we prepare to say goodbye to our Eden girl.  We are hopeful things will turn around, but we both feel it probably will not happen, so we ask for your love and support down this painful road.  

We know there is a special plan to our lives.  Each of us lived with God before this life, each of us will return to live with him after this life and families can be together forever.  This life is merely a probationary state, a time to prepare to meet God, to better ourselves and try our best to love others.  Eden has accomplished so much in her little life and we know that she has a "free ticket" back to live with Heavenly Father and we will have to do all we can to be our best so we can see her again.  

We will keep you posted over the next few days and feel your prayers of strength and love.  We thank you all so much for all you have done.  

The Big Picture

My husband is a very special, spiritual man as you might have read and I am so blessed that he is not only my best friend and spouse, but the love of my life as well.

The question of the day...Why does life have to be so difficult? and why for so long? Just a thought as I sat with Eden today and she continues to fight and struggle just to survive. Don't get me wrong and please do not get the wrong idea from my words, but she is having a rough time. We are two weeks post-op and her doctor are no longer telling us that she is doing better than expected. Over the weekend she really stopped making any progress and has regressed a little in their eyes. She is retaining more fluid than right after surgery and she is still unable to ween down on her medications so that her heart can function more on it's own. Over the weekend her white blood cell count (indicator of an infection) went way up. It should be in the mid teens and hers is at 44! They have sent cultures away from every port imaginable and everything is negative so far and they do not think she is septic right now, but no one is positive what is causing this. She is not febrile (feverish) rather a little cool. They continue to treat her for a bacteria in her ventilator tube and are now adding another antibiotic for a possible fungal infection. The Infection Disease doctor said he would keep us informed if anything starts to grow. We have been septic once before and I so hope that does not happen again. They tell us time and again that the more time a patient stays in the ICU the more prone they are to different infections. She is still heavily sedated as she does not maintain her stats when she is awake and upset. I know this is so hard to understand, but there are no other options for her right now.

I had a very long, frank discussion with her intensivist today and it was good, but heavy. All of her doctors feel that she had a good heart repair, but she still has a severe case of diastolic dysfunction. Imagine that your heart is like any other muscle and needs to contract and relax. The contraction phase of our heart is the systolic portion and the relaxation phase is the diastolic period. Her systolic or contracting period has improved since surgery, but her diastolic or resting time has not improved at all. This would be like us contracting our bicep muscle nonstop without a rest, it can only contract for so long. She is on two different types of medications to help it relax and we are finding that when the try to ween from those, she struggles. This all goes back to the hypertrophy or enlarging of her heart due to how sick it was. Her docotr told me today that signs of diastolic dysfunction are fluid retention, especially in the face and blood pressure issues. Both of which pertain to Eden. As far as the other systems in her body: her heart I explained, her lungs are still very sick and she could possibly struggle with chronic lung disease, her kidney levels are elevated, but they have been since the get go, her liver enzymes are also elevated, but her liver is still getting rid of her body's toxics and her bone marrow is not able to make new blood cells because she is so sick. Hence all of the transfusions. Yes, I really went for broke on my questions today! My question then was, "Where do we go from here?" She said that we have to find out and treat her elevated white cell count and in a couple of weeks if she is no better than she is now, we will all have to reevaluate. We feel like they are doing everything they can to make her better, it just concerns them that she is not progressing any longer. It is hard to imagine that a parent would have to ask these kinds of questions and really think about what we will do if...?

Eden has a long, difficult recovery ahead of her, but if anyone can do it I am confident that Eden can. It always amazes me that although I am at my breaking point with inner turmoil, as soon as I enter her room I am filled with a very calm, peaceful, loving feeling. I pray daily that the Lord's sweetest angels are attending her right now and giving her the comfort that I can not always provide. Her doctor on Sunday said that she is truly a miracle to have made it this far and she is my hero.