1-1-12 Ellie's first Christmas and New Years

Before I talk about the holidays I want to let you know where Ellie is at now...

She is sitting up all by herself and sitting herself up all by herself.  She sits up by laying on her belly and bringing her legs completely around to the front of her and then pushing up with her arms.  She reminds me of a gymnast when she does it.  It is soo cute.

She is saying la la, da da, ba ba, and making all the major sounds, short a, o, u, and long a, o as well as the oo sound.  Yesterday I was feeding her and she kept trying to grab the food.  I told her no very sternly and she cracked up laughing at me...lol  It made me laugh soo hard...I probably will not think it is funny when she is a little older.  She is growing so fast.  She is weighing in at 16.9lbs  and  we have not measured her yet.  She is wearing size 6-9 month clothes and wearing size 3 diapers.  She is eating regular foods grind-ed up in small pieces so she can eat it.  I think she is finally cutting her first tooth. She has been teething since she was born with no results!!  She is drinking formula in a bottle and regular cows milk in a sippy cup with a straw.

I can not believe how well she is doing.  She is very curious about the world around her.  I do not worry about her diagnosis anymore.  She is going to be fine and do great things I can just feel it.  God has a special plan for her.  

As far as Christmas goes...she was very interested in the paper around the presents but was not very interested in the presents themselves.  Her favorite toy was a xylophone/piano alligator.  She loves to bang on the keys.  As far as New Years goes...she passed out before the ball dropped.

Thank you for praying for Ellie.  She is a miracle from God.  I can not believe the wonderful things she has done for our family and she is only 11 months old.  I speak from experience, God does not make mistakes...he knows what he is doing.  I was soo worried when I first got the news when I was only 21 weeks pregnant.  If I only knew there wasn't anything to worry about.  Thank you Lord for your continued love for our family.

12-5-11 My First Year

Dear Mommy,

I am almost 11 months old and I have to say this has been one heck of a year!!

I remember when I first heard your voice.  I wasn't sure what I was hearing but after listening for awhile I realized you were crying.  I was unsure why you were crying until I heard your prayers to God.  You prayed for God to let me be okay, you prayed to have God heal my heart, you prayed for God not to take me home with him.  You were soo worried about me. I didn't understand why you were soo worried because I knew everything would be okay.  God has a special plan for me.  He needed me to have surgery so I could bring everyone together.  I heard you asking everyone to pray.  I heard you say there were hundreds of people praying for me.  People who didn't know you, people who didn't know me, people who cared and loved us just because.  I tried to reassure you that I would be okay by kicking you but you would just rub where I kicked and sing me a song.  You had a special song for me.  One that you said was just my song.  You would also wrap your belly in a prayer blanket.  I want you to know that I felt the warmth from that blankets love and prayers.

I was soo excited to see you and daddy when I was born.  I wanted to see the faces to match the voices I heard.  When I saw you for the first time you and daddy were crying.  I wanted to reach up and grab your face and tell you everything would be okay but my arms wouldn't move like I wanted them to and all that came out of my mouth was a cry.  That made you smile.  I wasn't sure why but I realized that you thought I wasn't going to live and when I cried you realized I was okay.  You held me soo close.  I fell asleep instantly.

I spent the next few months enveloped in your arms.  It was the safest place I could image.  You and daddy kept talking about surgery.   You talked about Down Syndrome.  I heard you praying for a miracle healing.  You had many people pray over me.  I do not know what Down Syndrome is but I knew that I was ok and what ever you were worrying about would be ok.  I knew Gods plan for me.  I needed to have the surgery to fix my heart and I knew it needed to happen to bring everyone soo close together.  I also knew that everything would be okay.  God has a plan for me.  I am going to be someone special in the lives of everyone who knows me.  I am going to show many people what it means to love and be loved.  I was sad to see you so worried about me but I wasn't scared.  I was excited for the adventure.

When it came time for surgery.  Everyone was crying; except me.  I went with my doctors and they put me to sleep and when I woke up I had everyone around me and I had tubes sticking out of me.  I am sure I looked scary but I felt much better.  My heart wasn't working as hard and I could feel the change.  I know you never left my side.  I knew I was safe.  I saw everyone who came.  I could not believe how many people love me.  This was my new beginning.  My heart birthday!   I went to sleep and awoke many times and saw you near me each time.  I am sorry I didn't let you sleep much.  I was all thrown off schedule from the medicine they had me on.







Since my surgery we have smiled a lot.  I have a team of people who make sure I am healthy and developing the way I should.  I wish you would believe that every child doesn't grow the same way.  Please do not worry.  I will crawl, walk, and talk.  Keep believing in me and supporting my development.  I am soo lucky to be with you, daddy, my bubby, and my sissy.  I love you all soo much.  Thank you for never giving up on me.  Thank you for helping me and loving me.  I am amazed everyday at the level I am blessed.

Well...Mommy, I am getting tired.  I am going to go to bed.  I am a happy baby...because you love me....I can not wait till I can tell you I love you...for now...I will say it with my smiles...love you mommy and daddy....good night sleep tight...

Love
Ellie

November 5, 2011 - Happy Halloween - Dear Ellie

I was watching Ellie sleep tonight and was thinking so many things as I was looking at her that I decided to write a letter to her, another mom on here does it all the time and I felt the need to write one to Ellie...here goes

Dear Ellie,
You are soo beautiful!!  I love you more each day.  I know there are people out who do not understand your diagnosis or what it would mean to have a beautiful son/daughter like you join their family and they are scared.  I wish we could tell them how wonderful you are.  I wish you could tell them how happy you are and how happy we are to have you with us.  I wish they could feel this love.  Your smile lightens my day, your laughter brightens my week.  I can not imagine loving you more but each day I seem to feel that I love you more then the day before.  You amaze me with your abilities and heart.  You are only 9 months old yet you have control over everyone in the house and beyond.  You have a captive audience of people dying to hear the next update, dying to know how you are doing and what new trick you have learned.  All you have to do is squawk and everyone turns to look at you.  As of right now you are sitting independently, rolling all over the floor, feeding yourself treats, playing with your toys trying your best to crawl, and demanding attention when no one is looking at you.  I just couldn't imagine life without you.  Your beautiful smile melts me.  I can not wait to see the woman you will grow into be.  You are an angel....you were sent to me to show me how blessed we truley are.  I thank the Lord for you everyday!

 Happy Halloween

Pumpkin Patch

Pumpkin Patch

Trick or Treat

Everyone's Pumpkins for this year!!  Mommy carved your

pumpkin in the shape of a cross with a heart in the middle of it

to represent how God has you (and your heart) in his hands.

We had sooo much fun this fall going to pumpkin patches, trick-or-treating and carving pumkins.  You are soo curious about everything.  You are determined to get what you want...I can not wait to see how you react to these events when you get a little bit bigger.  I love you...Little Bitty!!

Ohhh...I know it is early but I think we finally picked a name for your Down Syndrome of Lousiville Buddy walk next year...we are going to be Ellie's Angels and wear halos and wings.  I am soo excited.  So many people are going to be there to walk with you to support DSL.  It will be soo much fun!!  I love you Ellie Mae...Sweet Dreams.

Love Mommy

10-13-2011 - it will be ok

I hope this finds you in a place where you are ready to recieve what I am writting.  I am talking to parents who discover that their baby will require heart surgery and may or may not have down syndrome.  I want to tell anyone who is facing the same road we are now traveling...IT will be ok...it doesn't feel like it right now...but it will be ok...

I have the need to share the way I was feeling in September 2010 when I found out that my unborn baby was going to be born with a heart defect that will require surgery and 50% of babies born with this heart condition also had down syndrome.  I was supposed to be going to find out that my baby was a girl and then go shopping for cutsie little pink outfits and clothes.  I was unprepared for this diagnosis, something that I had not imagined would ever happen to me.  This stuff happens to other people, not me.  I spent the next few weeks crying.  Crying for myself, crying for the life of my baby, crying for her future, crying because I didn't know what this diagnosis really meant or what it really would look like, or how others would treat me and my baby, crying because there was nothing I could do to "fix" it, and fearing that I would not see my baby as beautiful.  I struggled with knowing and not knowing.  I prayed for a miracle healing.  I prayed for God to just let me have her.  I feared she would not make it through delivery and then if she did I feared she wouldn't make it through surgery.  I was ashamed of some of my thoughts and worries.  I was ashamed of some of my feelings.  I felt soo alone, even though I had a support network beyond explanation.  I felt like no one understood what I was going through.  No one really understood my dreams of the "perfect" baby were shattered.
Her delivery brought mixed feelings, excitement for the arrival of my baby girl, fear that I would finally have to face the reality of whatever happens once she was born (would she live/die, would she have down syndrome or not) and guilt for not feeling anything but joy.  I cried though the delivery...not because it hurt, but because I was scared.  Scared of facing reality.  When she was born and I held her in my arms and saw she was alive, she was moving, and breathing, and ALIVE...I held her closer and longer.  I didn't want her to go away.  I wanted her right here with me.  I wanted to protect her.  I wanted everyone to love her.  At this point we didn't know if she had down syndrome, but that was not the major concern.  What kept me up at night worrying was that soon she would have to go through a massive open heart surgery.  Someone would cut her open on purpose to fix her heart.  I struggled with this one all the way through till she was 5 months and old enough to have the surgery.  For now, I had her in my arms and I wanted to do everything I could to make sure she survived the surgery.  We added her to EVERY prayer chain you can imagine.  We started prayer chains on facebook, we added her to prayer chains on the web, and through word of mouth.  There were soo many people praying for my sweet Ellie Mae.
Jumping ahead...Ellie's surgery...brought soo many fears and MANY more tears.  My biggest fear through all of this was loosing her.  Everything else we could work through.  I couldn't handle loosing her.  I repeated OVER and OVER...please don't take her God...please let me have her...please let that be your will.  It was his will.  We spent 11 days in the hospital and she did wonderfully.  We have our beautiful baby girl and she will grow up and grow old and we will be fine.  The diagnosis is scary because you do not know what it really means, or what it looks like.  No parent wants their child to have to have a surgery, a disability, or both.  your feelings are ok, it is normal to have these feelings.  I wouldn't change anything about my beautiful baby girl.  My little Ellie is a blessing to our family  She has brought us closer together and closer to God.  I still do not know what raising her will look like, but I don't know what raising my other two children will look like either  No one is guaranteed anything.  All I know is I will love her and my other two children and do the best I can for them.  When I look at my little Ellie Mae, I do not see a baby with down syndrome, I see my perfect miracle from God.  Her smile is beyond words, her laughter is enough to break you into tears.  I never imagined loving a human being as much as we all love her.  Please know once, you get past the initial shock of everything, you will be happy beyond words.  You will have a new outlook on life and a peace beyond words.  You will be ok, your baby will be ok, God will bless you as he blessed my family...with our extra chromosome....My prayers are with you for strength and peace.

Here is a story that explains the emotions you feel...I did not write it....but I clung to it the first few weeks...

WELCOME TO HOLLAND!!!

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

October 8, 2011 - Videos of Ellie today 8 months old

 After my post I was cracking up laughing over Ellie's noises and I said to myself..I should put some on the blog for everyone to enjoy...so here they are!!

ENJOY!!!

October 8, 2011 - updates

Sorry it has been so long since I have blogged, but life has gotten a little crazy since school started back up.

Since the last blog...

Ellie had her 6 month re-evaluation with her interventionists.  The assessment they gave her is an assessment they give to all children, not just children with disabilities.  The normal scoring range is between 90 and 110.  Ellie scored a 89.  She is one point below the normal scoring range!!  They believe the only reason she didn't score in the normal range is because she was laid up for several weeks when she had her open heart surgery and if she would have been able to work on skills during that time she would have scored in the normal range.  I was told that the intervention that is offered now for babies with DS is more intense then it used to be and they notice a HUGE impact on the development of children with DS long term. There is no one magic pill but they say some things that can have an impact on her development are fish oil, vitamins, and florestore.  Babies with DS tend to stop producing the oily substance in their brain and the fish oil can replace that helping their brain to process quicker.  Children with DS tend to become sick more often so taking vitamins and florestore can help prevent many of these sicknesses and help her to stay on track with development instead of being laid up with an illness.  We are doing all of these things.  She is receiving developmental intervention and physical therapy as well as taking all of these supplements to help her development.  Her biggest advantage is the prayers that are with her.  There are soo many people praying and loving this little girl.  She is definitely in the hands of the father!!  Thank you Jesus for my beautiful baby's progress.

We participated in the Down Syndrome of Louisville On the Move Buddy Walk.  We weren't sure what it was all about so this year we just went as a family.  It was AMAZING to see all of the people there.  They had posters of children and adults with DS and pictures of them and their abilities.  It was very hopeful to see.  Anyway...next year we want to form a team to walk with Ellie.  They had all kinds of teams there with really cool themes and names.  Names like Susies superheros  and Patricks Patrol.  We want to come up with a cool theme and team name for Ellie for next year.  We also want to have MANY people on our team.  How awesome would it be to have all those people walking with Ellie to support a program that is going to be working with Ellie for the rest of her life.  The Louisville Metro area has approximately 500 families they serve that have DS that is not to mention the surrounding areas.  I have been told that Ellie is in the best place to grow up with DS.  She has soo many programs and opportunities for her to be independent and work, and live, and be...like everyone else.  God knew the plan to bring us to Lousiville LONG before we Ellie was even a twinkle in my eye.  Anyway...We need help coming up with a name for Ellie's team for next year. Any suggestions are welcome.

Also, recently there was an article in the paper about a little 3 year old boy named Brady.  He was born with DS and a congenital heart defect that required MULTIPLE surgeries.  He passed away during the last surgery he had.  The article went on to explain that many people see children with DS as a burden on the family and society because of their health issues and long term care issues.  However the family argued that the life of little Brady was valued by all who knew him.  In his short years he touched more people with the kind of love we only dream about.  The kind of passion that we have never seen and the drive that can not be detoured.  So many people hear DS during their pregnancy and the thought of termination crosses their mind.  I could not imagine life without Ellie.  I pray that no one ever takes the life a child due to a diagnosis of DS.  They are not a burden, they are a blessing...I cried when I read Brady's story in the paper beause his story hit home.  His final fate was what I had feared for Ellie.  That was not God's will and we are still blessed with my little miracle baby.  Her smile melts me, her laughter brings me to tears.  No matter how tired I am or grumpy I am...one look from her and everything goes away and the world is good again.  Thank you Lord for opening my eyes to what is important.  I wouldn't change one thing about Ellie...I LOVE her and her extra chomosome.  Oh...there was a cool poster up at the DS walk...it said...Friends don't count chomosomes.  AWESOME!!

August 29, 2011 - Ellie is laughing

Thank you for all of your prayers.  Sorry it has taken me soo long to post another update and pictures.  So I posted videos instead.  Ellie is doing fabulous.  She is beginning to sit up with little support by her self and she is babbling.  It melts my heart when I hear it.  She smiles when you just look at her now.  There is nooo way you could be in a bad mood when you see her smile no matter how tired you are.  I could not imagine life without her.

When we saw the cardiologist last week I found out that she will have to go to the hospital next summer to have a heart catheter put in so they can take pictures of the inside of her heart and to close up the valve that reopened.  I realize it is a minor procedure and they do not even consider it surgery but she will have to be put to sleep again and she will have to be intabated again and even though she will only have to stay one night at the hospital it still breaks my heart to think this is coming next year.  How ever it seems soo minor compared to what we went though this past summer.  Thank GOD that is over.  For anyone anticipating an upcoming surgery, I know what you are going though but I promise the hardest part is the wait for it.  Pray, pray and pray some more.  God is good all the time.

August 15, 2011 - A realization of my many blessings

I can not believe it is August already.  School is starting and I have to leave my precious Ellie Mae with my best friend.  It is soo nice not to have to worry about Ellie while I am working.  It is a relief to know she is in good hands.  I forgot to post that she has been released from the surgeon and is doing FABULOUS!!

A few things have occurred to me over the last few weeks and I feel the need to share...

One, how awesome our God is.  Looking at Ellie you can see God at work.  It is soo amazing...I love this little girl soo much. 

Two, I need to appreciate her while she is little.  Soon she will be grown up.  Devin is already 16 and doesn't have time for us...Kaylee is turning 7 in 3 days and I can not believe she is so grown up....Before I know it Ellie will be right behind her...I need to quit focusing on the little things and worrying about which milestone she has not met yet and just enjoy her.  She will roll over, she will sit, she will crawl, she will walk, and she will talk...in her own time.  I can not compare her to any other child even her siblings, and even other children with down syndrome.  She is unique, just like every other child.

Three, life is so precious and Ellie Mae is an answer to MANY prayers.  I keep reading everywhere that abortions are on the rise...It kills me to think that a person could do this to a helpless child.  I pray that weight is put on the heart of every pregnant woman contemplating an abortion...and weight is put on the medical teams who perform them...please help them to see adoption is the better choice there are THOUSANDS of families wishing they could have children of their own.  Lord thank you for my children.  They have made me who I am today.

and Four...I AM SOO BLESSED.  There are soo many wonderful things in my life.  My husband and I have a job.  We have 2 vehicles that run every time we need them to...we have a beautiful home, 3 meals a day, clothes on our backs, and health.  Now that Ellie's heart is fixed and she has been released from the surgeon we are all healthy.  Not to mention all the toys we have.  There are soo many people struggling to keep the lights on, food on the table, and their family together.  Lord I thank you for the many blessings you have given me.  Help me to be a blessing to others.

I will post some new pictures of her shortly...May God Bless you all...

July 28, 2011 - more...

So here we are a little more then 4 weeks since her surgery. For the most part she is doing great. We have been having troubles with her sleeping and pooping. They put her on more probiotics and little improvement. She went back to the dr yesterday and she sent us to havenher stool tested and they put her on antibiotics. I will he glad when wenget her stomach straightened out. She is very uncomfortable, however she is smiling a lot more then she ever has before. We are still fighting the sleeping battle and have been trying to keep herup during the day so she will sleep at night but that hasn't worked so well. I hope that by tomorrow night we see improvement in her sleep patterns. Kenny and I have started taking turns getting up with her so we both can get some sleep...but mostly we are walking around like we got hit by a bus...thank you Jesus I have not been working.

We went to the cardiologist today and he thinks she looks great. Because of all of the stomach issues he decided to keep her on the heart meds. He said her numbers look great though. The only thing is she has a mitrovalve that has opened. I guess when you are born everyone's is open and shortly after birth it closes, Ellies closed and then reopened after surgery. They are unsure if it will close again on it's own so they are going to keep an eye on it and if it hasn't closed in a year they will close it when they take pictures of her hart using a cathider in a surgery like procedure. She will have to be anesthetized and a cathider will be inserted in her leg and will go up to her heart to take pictures then if that mitrovalve is still open they can close it using the cathider. My heart sank when he told me this but he says they take these pictures one year after every surgery and the mitrovalve opening is common...however...she will go home that day. I will still pray it closes on it's own and we don't have that issue. God is good all the time.

July 22, 2011 - Sleepless in Shelbyville

Dear sleep...I miss you...I haven't seen you in several days. Every time I begin to visit you Ellie calls on me and I have to stay. I pray I see you soon, my little Ellie is having some tummy troubles that is keeping her from visiting you for long as well. As soon as we get her back on track we will both come for a visit. Sincerely, Sleepless in Shelbyville

The probiotics have made her stools more like baby poop but she is still pooping numerous times throughout the day.  She is up all night and never sleeps more then 2 hours at a time.  The Dr says she should be sleeping about 14 hours a day; 2 naps and 1 longer time during the night.  This is far from what she is doing.  She sleeps for about an hour and is awake for 2 hours.  During the night she may sleep for 2 hours and then is up for 2 hours.  Each time she wakes she fills her diaper.  I think I am going to buy some of those baby gas drops and try giving them to her and see how it goes.  Thank you JESUS this is happening while I am not working.  I could not imagine having to deal with no sleep for 3 days and teach my class.  However, she coughs now and no pain, and she can tolerate being on her stomach for a few seconds before she complains.  God is soo good.

July 19, 2011 - probiotics

So I took Ellie to the doctor today and she thinks that Ellie's digestive track is aggravated by the antibiotics she was on and that is why she is having all of this diarrhea. So she put her on probiotics. If Ellie is not doing better by Thursday we are going to take her to Kosairs outpatient to have some tests done in her number 2....lol. Hopefully the probiotics work I want Ellie to feel better. She has been through enough. She is being VERY cranky, and needy...I am not sure if that is Ellie Mae diva or if that is Ellie isn't feeling well.

July 18, 2011. - Still having diarrhea

Ellie is doing great...I Am amazed that we are already 3 weeks out from surgery and I have my smiley baby back. I know adults who wouldn't have been as strongthroughputt such a massive surgery. We went to the cardiologist last week and he said that Ellie is doing so well that if she continues to do so well she could be off of all her medications before the end of the month. WOW!!!!! God is good. They weighed her while we were there and she was only 10 pounds and 12 ounces...she is still a little bitty...lol

However, little Ellie has been off of her antibiotics since Friday and she is still having diarrhea on a regular basis and she ran a really low grade fever yesterday. I am taking her to the dr tomorrow...I am sure it is nothing but it is better to be safe then sorry.

Oh BTW Ellie is laughing now. It is the cutest thing ever...I LOVE smiley babies!!!

July 11, 2011 - What a great day!!

It has been soo nice to have Ellie home and the stress of surgery behind us.  Even though she is recoperating from major surgery you really can't tell by looking at her.  She looks just as happy as she did before surgery.  The only way I can notice is when we move her certain ways or when she coughs.  It really hurts her to cough.  I wish there was some magic pill I could give her that would take the immediate pain away from movement and coughing.  Tylenol seems to keep the bulk of her pain away but she gets a dose of loratab at night before she goes to bed so she doesn't move the wrong way and jolt her self awake in pain like she did the first few nights.

Life is getting back to normal.  Yesterady we went to chirch and then out to dinner.  Then we went for a walk in the evening.  FYI - for those who do not know...ELLIE loves to go for walks.  At the hospital she wanted to be in the wagon because it was kind of like talking a walk in her stroller at home.

Today she went to the pool and got her feet wet and then went for a walk in her stroller this evening.  Our neighbors are amazed at how well she is doing and can not believe she had open heart surgery just 2 short weeks ago.  Praise the Lord everything went smoothly and she is healthy and we are able to continue on with our lives.  I pray the families who are still at Kosairs or who just got there continue to do well.  I pray a blessing on them and encourage them to draw near to you for strength.  Through you all things are possible, Ellie is my proof.  Thank you lord for all you have done for the Ashton family...

Twp days before surgery we have family portraits taken...here are some...

July 9, 2011 - First full day home

Thank you to everyone for your thoughts and prayers throughout this entire process.  This was one of the hardest things we have ever had to go through.  I never wish anyone to have to watch their child go through something this horrendous.  Knowing that you were all here praying and thinking about us made it just a little bit easier.  I am having trouble with posting comments on your comments and sending e-mail to you.  I appreciate everything.  You can not imagine how much you mean to us!!

Ellie is doing great and is loving being home.  Last night she got a bath and we scrubbed the sticky tape and glue off of her.  She got lotioned up (except for where the incision is) and rocked to sleep just like she used to before the hospital.  You can tell she is glad to be home.  She is still a little sore and complains a little when she is moved no matter how careful we are, however, you can tell she is doing a whole lot better and glad to be home.

My posts on here will begin to get fewer as we begin to relax and enjoy life a little more now that this surgery we have been anticipating for the last year is over.  We have been so consumed by the surgery we missed the little things.  I will still post updates from time to time and would love to keep in contact with you all.  If you would like to stay updated and do not have facebook (because I am on there all the time) please send me your e-mail address and I will be glad to talk with you.  Here is my e-mail: address
faith.ashton@jefferson.kyschools.us

Nurse Kristina I would love to stay in touch with you and have no way to message you.  Thank you for showing such compassion for my little angel.  I know you see a million children every day and yet you still treated Ellie like she was special.

July 8,, 2011. Finally home

The dr came in this morning and we finally got to go home. I am actually blogging from my couch. Ni will blog more later...I am tired right now. Thank you everyone for your prayers and thoughts for our family through one of the hardest things I ever had to go through...the rest of my life is all down hill.

July 7, 2011 - this and that

12:44am. Ellie had been running a low grade fever all afternoon and had been really fussy. I was holding off on the pain medications because the doctors said by this point she should be on Tylenol or Motrin to relieve the pain and she is still taking loratab. However, I am told that children with down syndrome have a lower tolerance for pain and need more pain medications to relieve the same amount of pain that a typically developing child might need. So anyway, I had the nurse give her tylenol and took her for a walk in the wagon. I was beginning to think that we would have to stay another day because she was still cranky and still running a low grade 101.1 fever. While we were on our walk we ran into the doctor who said as long as the fever doesn't get any high and as long as her blood work came back good we would be going home tomorrow. That made me feel a whole lot better. That is until I remembered I still had a really cranky baby. I had the nurse change her dressing on her central line and give her some Mylacon drops and yet she still would not sleep. By the way the morning nurse was either a horrible nurse or really busy, I still haven't decided which one I will claim to. So when the evening nurse came in she suggested we try loratab and with great success my cranky baby was a little more easy going. Then she noticed the dressing the morning nurse had put on was already falling off and pullng out the central line. We had to get a chest x-ray to make sure the line was still in place. If it wasn't it would have to be taken out and she would miss her doses of antibiotic the dr wanted her to have or they would put the antibiotic in the IV in her head which the dr didn't want to do. Or another possibility was more infection die to the exposure of the central line. So we had to jump through those hoops. Only to find out (PTL) the line was in place and no damage that we could see at the moment had beedone except for some inconvenience issues. All the while that was going on I waas washing he dirty bottles and discovered that one of the breast milk bottles had someone else's name on them. Meaning I had fed Ellie someone else's breast milk. How in the heck that happened I do not know however now to make sure Ellie wasn't exposed to anything the other mother has to have bloodwork done and background check to make sure Ellie is ok. Just one more thing for me to worry about. So now here I am, thanking god th central line was in place, praying the other mother was healthy, praying the doctors say Ellie can go home tomorrow, praying that when we go home there are no complications and last but not least praying I get more them 2 solid hours of sleep tonight. I will blog when I know more tomorrow. Night everyon!

July 7, 2011 we almost went home

Last night Ellie decided she should run a random fever of 102. Then we gave her Tylenol and it went away and didn't reappear. So when the doctors came in this morning they said that they were going to send us home today but because of the infection in her incision and the fever spike last night they do not want to send us home until she has been on the antibiotic through her IV until at least tomorrow as long as she doesn't run a fever. They do not consider it a fever until it is 101.5. She has been hanging out at 100 for the last hour or so. She also hasn't had any loratab since yesterday and no tylenol since 9:00 pm last night. I am dreaming of dreaming...in my bed.

July 6, 2011 - getting settled into the new room

The doctors came in this morning and said they think her incision is definitely infected. It started oozing puss this morning and they have ran a culture on it to see what kind of infection it is. They are going to remove the stitches from the spot where the drain tube was and press on the incision to see if they can press out the puss instead of slicing it open to drain it instead. They said other then that they tink she is doing great. They said if she keeps up on this path she will be out of here in a couple of days. Yeah, I do not think her or I can take much more of staying here and being woke up every hour for something stupid that could wait till the morning. She looks soo good today. I gave her a bath and got her dressed in real clothes. We even took a walk around the hospital with little Mae riding in a wagon. Thank god for her. Praise the Lord she made it through this horrible surgery with little damage.

July 5, 2011 - eviction from the ICU

Yeah, we are finally on the floor. I almost thought we wouldn't make it. Ellie continues to run a fever on and off and have diareah. They kept the central IV line in her neck and the IV line in her head. She is still on the really strong antibiotic but they can not find the source of the infection. There are several possibilities but no defineates. I know we will be here on the main floor for at least 2 days if not longer. They are concerned that there is an infection in the incision but it is on the fence so they want to watch it because if there is it could be a staff infection. Like I was telling the dr. if a staff infection and pneumonia was all that happened to us...we have no problems. Considering the alternative (death, permanent pace maker, stroke, brain damage...ect)not to mention all the countless things that I have seen other children come into the ICU with....we got off pretty easy if you ask me....Thank you Jesus for my MANY blessings. Ellie continues to play and eat but has yet to smile or coo at me. It will probally break me down into tears when and if she does. Thank you all for being a blessing to me...god bless