Monday, August 29, 2011
Well Ella had her cardiology check up today, she did very well considering her usual sever anxiety! She only cried a little bit during her echo cardiogram, and then was brave the whole rest of the time!!!! This is a HUGE answer to prayer! Jon and I could only describe the way she handled it, as God hearing the prayers and giving her indescribable peace! Her atrial septum doesn't seem to be narrowing any more, but we are going to continue to watch it! This was the main concern going into today's appointment, so that is another huge answer to prayer! Her sats are staying around 80-83 and Her doctor said he would prefer to see them around 88. However at this time it isn't a concern, he said she may just drop lower faster than some others. Ella is 19.5lbs. and is 29in. long!! Her ear infection is completely gone and her ears look perfect! Also the doctor said that her heart functions looked great! As of right now we are on schedule to have her next open heart surgery in the next year to year and a half. Although it is absolutely necessary, we are not looking forward to it. In fact it is on my mind several times everyday... we are just clinging to the One who has continually saved her life and the one who knows our future! Our next visit to cardiology will be in November unless for some reason we need to go in sooner. Thank you all so much for your prayers today and for all of the prayers that have been lifted on our behalf. Truly we are humbled and amazed!
Posted by Amy at 5:06 PM
Thursday, August 25, 2011
Monday, August 22, 2011
I know many of you pray for Ella's heart friend Emma! Emma was supposed to have her Glenn surgery today which was the most recent open heart surgery Ella just had. They had to postpone it due to a viral infection, PLEASE pray for Emma and her family as they fight off this cold. As you have seen the way an ear infection has affected Ella you may be able to imagine how hard a full blown cold can be on sweet Emma who is inter stage! Until these babies have the Glenn they are SUPER fragile! So please remember to lift her up in prayer!
Thank you all for your continued prayers! Thank you for continuing to be patient with me while I try to get Ella's birthday pics up! Here is a sneak peak! :)
Posted by Amy at 4:19 PM
Tuesday, August 9, 2011
December 8th 2009
I took a pregnancy test, and we saw the double lines!!
We were so happy words can't express
the feelings we had of gratefulness.
I was only about three and a half weeks pregnant when I took the test,
but the nausea had already begun to hit me when night would come and it was time for rest.
I was five weeks pregnant when we thought we lost you,
we prayed and cried we didn't know what to do.
We called the doctor there was nothing that could be done.
they told me to rest but it was so hard since our hearts you had already won.
Four days later we saw your heartbeat so tiny and yet so strong,
it was rare they could see it so early they said, we smiled at each other as our hearts sang a song.
Mommy began to get very sick.
Although it was hard you were still our number one pick.
I was in and out of the hospital three times, once for 4 days, another for several hours, the last time for a month as we fought for your life
You were so strong and we were determined to fight.
Lots of IVs and and vomiting, a feeding tube, and physical therapy, trying to eat was certainly the worst and it was not fun to say the least,
but it was so worth it to feed you a feast.
You needed the food to help you grow,
and just how important your weight would be little did we know.
Daddy did the encouraging and doctors gave the orders, if what went down was to come up I must start over again.
I would cry and want to give in but Daddy was strong and we fought to the end.
I was 12 weeks pregnant when we finally went home, I was very happy to go,
I hadn't seen outside in a month, there was lots and lots of snow.
At 17 weeks you started to show,
mommy was proud and wanted everyone to know
Time went on and we reached half way,
That was certainly a monumental day!
At 21 weeks we found out you were a girl, we smiled
knowing you would be our treasured pearl!
You were a dream come true
oh how very much we loved you!
Only two days later mommy got a call
and what the nurse said made my stomach fall.
She said they found something not quite right with your heart,
I felt like I had been struck by a dart.
When I hung up the phone, I could hardly breath.I walked outside, knelt on the ground, looked up in the sky
and then I asked God why.
At twenty-four weeks we went to get a second look,
and the doctor confirmed that something was not text book.
He told us you had half a heart,
you would need three open heart surgeries and it would be a rough start.
My eyes filled with tears and my heart with fear.
As I realized we desperately needed God to be near.
two more weeks past and we went in for another glance,
they found something else they gave you only a 20 percent chance.
With this new realization that we may not have you long
we worked hard to cherish each day and we liked to sing to you a song
We sang "You are My Sunshine" and others songs too
That's what you were to us and others who loved you.
my first mother's day came, and although still sick, I was strongly driven,
because being your mother was one of the greatest gifts I had ever been given.
We loved to watch you grow,
and feel you wiggle high and low.
You were continuing to show us how strong you are,
and we knew that strength would take you far.
It wasn't often Mommy and Daddy got to go on a date,
because I couldn't walk far, with the sickness that seemed my fate.
Despite the daily vomiting and struggle as I ate,
Somehow Jesus touched you and you still gained your weight.
Your daddy was Strong, supportive, and kind
he always seemed to have our best interest in mind!
I couldn't believe no stretch marks appeared,
although I was happy it seemed a little weird!
We had a small shower with some of mommy's closest friends
to celebrate your life even if it was close to the end.
With all the complications sometimes the normal stuff got lost,
for instance I knew the anatomy of your heart but had no clue what diapers cost.
As the time drew near we decided to set up your nursery
we were optimistic... cautiously
We wanted to believe you would beat the odds
and that perhaps we would be shown an act of God
We made the decision, to deliver you in Texas,
knowing that this would mean the best chance for surgery successes
Our last Sunday in church before you arrived,
I remember feeling emotional and I cried.
I knew it would be awhile till we came back
and I wondered to myself if you we would lack.
So with nervous hearts and brave smiles
we packed our bags and drove the miles.
We left our home to be with you,
it was hard to go, but it's what we had to do.
We didn't know how long our stay would be
only that us being together would be the key!
Once we arrived our schedule was full
it seemed as though we were in medical school.
Doctor after doctor went over your condition
trying to help us understand what to expect in our position.
They said many times you were at high risk
and told us again you would be very very sick.
We finally made it to the day before you were born
I had mixed feelings that night as I morned.
I could hardly wait to see your sweet face,
only I didn't want you to be gone, I was a basket case.
Early morning on August the 9th 2010
we drove to the hospital, I didn't want to go in.
After a seven hour delay,
because of a few bites of egg that day,
Finally it was our turn
and the anesthesiologist begin with a burn.
The spinal hurt so much worse than I had fathomed
but it was better than feeling the surgery I imagine
I couldn't help but smile even with the future unknown
because I was about to meet you and you were our very own
The doctor said she is almost here
My heart beat anxiously as I began to shed tears
A few seconds later I hard your sweet cry
and they held you up high.
Daddy took one hand and I took the other
it was indeed a joy that no grief could smother.
Only a few seconds had past when the doctor said, I have to send her away,
Oh how I will never forget that moment on your birthday.
You were put on a ventilator and started on meds
Oh what a long journey we had ahead.
You had your first surgery right away,
the nurse reported that it took longer than expected, but at least it went well hooray
You were in surgery for 7 hours, and daddy sat alone by your surgery door
as I was in recovery in a different hospital on another floor.
We may have been physically far apart,
but we were joined together by heart.
Daddy came to see me at the end of the day
I tried to come see you but all I could do was lay.
Not being with you will always be something that will make me sad
although I hope you'll always know I wanted to be there and my heart you had.
I hadn't even seen a picture of your face and I wanted so badly to see your eyes
Daddy got this picture and it made me cry
I hope you know how very much I wanted to see you, I cried,
the pain was was too much but believe me I tried.
It wasn't till early that next morning I was able to finally get in a wheelchair
and take the long trip to your room to see you laying there.
you were so beautiful and oh so small
I wanted to hold you, you were a doll.
Two days later we got a huge surprise,
I got to hold you while you were still your birth size!
I held you for a really long time
You were so cute and you were mine
It was a moment I wasn't sure I would have, my heart was so full,
It was very very emotional
the next day you set in your daddy's arms
and I could tell he was instantly charmed.
When they put you in his arms you were wide awake,
You looked at daddy and then to me as if you new we would do anything for your sake
We were so excited to see you get dressed
after all we knew you would want to look your best!
The day you turned one week old,
would be the day of your next surgery so we were told.
This would be your first open heart
It was beginning, this was the start
We kissed you and prayed over you and shed many tears,
knowing that we may be about to face our worst fears.
Although things did not go just as they planned
we knew the Lord still had you in the palm of His hand.
They informed us they would have to try again,
your little body just needed more time to mend
So we thanked the Lord for everyday,
and gave you lots of love in every way!
Although I was hurting inside and out,
you kept me going even if at times I did pout.
Looking in your eyes made everything worth while
how could we not help but putting on our biggest smile.
You were two weeks old and they said let's try again
we really must get this shunt in.
You made it through just like a champ,
our concern now were your lungs that were damp.
That first night your heart rate shot up way too high
they told us this is not good she could die.
They worked very heard to stabilize you,
giving you meds they said the only thing to do was to wait it through.
Daddy and I prayed hard for God to spare your life, then the doctor came over and asked to pray with us for you,
because that was all he could do.
We saw some improvement right after we said amen,
the staff was confused they had not done anything, God had touched you once again.
you did well with recovery despite the scary times,
they say you were a rock star on your long hard climb.
Once there was a mistake and potassium was pushed in your heart
You could have lost you life but God wasn't finished with your part.
When you would get worked up because you'd had too much.
You sure did love your daddy and his magic touch.
Every single day you got a little better
and we were thrilled to finally see you without the ventilator!
Although you had to where this funny contraption
that didn't stop you from your styling fashion!
We were so excited to finally see you smile
this truly made everything again feel worth while.
You were weaned to just oxygen and you did so well
we just took one look at you and could see you were strong, we could tell
Finally a special day that I had longed for,
you got to try Mommy's milk and then you wanted more!
Most heart babies have a hard time sucking,
you amazed us you were truly something!
Your sunshine brightened every one's day
I guess being optimistic was the only way.
Finally breathing all on your own, we were so proud of you
and by the look on your face, I'd say you seemed a little proud of your accomplishment too!
You were three and a half weeks old when we moved out of the ICU
we were so excited we could hold you whenever we wanted too!
I remember rocking you for the first time
oh what a happy feeling was mine.
I couldn't believe it when you finished your first feed by mouth
We were so excited, because your feeding tube we wanted to leave without!
One day you decided you had enough,
the feeding tube had to go it was a must
You pulled it out before we could stop you,
but mommy was glad because I saw your whole face in view!
You were four weeks old when we bid the hospital goodbye
we were ready to go, no we weren't shy!
We took lots of pictures and I ran down the hall
Skipping and laughing and all!
four days later they gave you the all clear,
so we loaded up our stuff, our trip's end was near!
You had a whole new world to discover
and again I was so very proud that I was your mother!
You did great on the long drive home,
and then I couldn't believe you were finally in a cradle all your own!
You adjusted right away
as if you knew this is where you were meant to stay!
You kept growing and smiling all the way,
you just brightened every single day!
I certainly cherished our time together
having you to hold was never better.
So very many people loved you
You didn't even have a clue!
They had a fundraiser called the "worth it all" run
We were able to take you and everybody had fun!
We were in awe as we watched you develope new skills with time,
they said you would need to catch up and that you would be behind, but you were just fine!
Watching you sleep is a special time,
it's still and quite and I always thank God that you are mine!
Although every part is fun, holding you is the best
I love the way you hold my necklace and lay on my chest.
Here you are learning to sit in your chair,
you were only three months you're growing so fast and I can hardly believe you have brown hair.
You worked so hard to learn and play
but your heart would get tired anyway.
One scary night your oxygen dropped so low
we called the cardiologist, because this was dangerous we know.
We hooked up the oxygen tank it was so scary
I was hoping everything was okay even though I was leery
All though you felt bad,
a smile your face still had.
Within a few days we were in to get your heart checked,
they changed some meds in hopes it would help, nothing worked, I was a wreck.
We got a call from Dallas telling us to bring you that night, emergency cath surgery would be in the morning.
So we threw our bags together and went down without warning.
When they started your IV you cried so so hard and there was nothing I could do.
I held your head and whispered prayers in your ear for you,
I prayed that Jesus would take away the pain,
you instantly stopped crying turned your head, fell asleep, and still you became.
It was hard to go back and see you in the hospital bed,
you were hungry and tired but could not be fed.
I held you, rocked you, and tried to comfort you,
yet their was nothing I could do.
Daddy was by your bedside just like always
He was never much farther then the hallways.
Just 4 days later we were headed home! Good as new
without the oxygen tube!
You were so happy and sweet
you would never know a surgery you had just complete.
Once we were home you continued to grow,
daddy thinks you look pretty in your bumboo.
You have hundreds of facial expressions and this one sure got some laughs,
I think you get them from mommy because expression daddy tends to lack.
Just chillaxing at home with your contagious smile,
you continue to make us laugh all the while .
You're a bit of a show off but that's okay,
you're kind of a big deal and we like you that way.
Three months old and your first thanksgiving!
You wore the first outfit Mommy ever bought you, it was my first purchase in faith that you would be living!
We couldn't see family or friends this year so we made it special just us three.
We decided to decorate your first Christmas tree!
We took a family photo to capture the day,
we are as thankful as can be in every possible way.
We love you so much our sweet Ella Dawn
and forever over you we will fawn.
4 months and counting you are growing and living up to your nick name,
you do not like tummy time but you are our sunshine just the same!
One day you were playing and you got so tuckered out
you fell asleep holding your toy while I was up and about.
In mid December we wanted to do something fun,
after all it was your first Christmas we had to spoil you some!
We bundled you up to go drive through some lights,
You watched every display intently and in your eyes we saw delight
You love your toy flower, and playing peek-a-boo
Sometimes it makes you laugh and then we laugh too.
You love to look in the mirror and I can see why,
You are so pretty and you like to wave hi.
Usually you love mamma's kisses really you do,
you put up with quite a lot that I put you through.
You have pink toenails but stinky feet
they are tiny and oh so sweet!
Your first Christmas morning we got up so early
maybe next year you'll have more fun...surely.
Later that day you were as Jolly as can be,
you had a big smile as everyone can see
Mommy bought you this sweet Christmas dress, and hat I couldn't resist!
You were certainty on Santa's nice list.
5 months old and you know your daddy rocks
I'll bet he will want to keep you under key and lock
Again with personality you are such a clown,
one look at you and our spirits can't be down
At 5 months old you got to wear the first outfit daddy bought for you.
He bought it one day when I was pregnant and needing cheering up because I was feeling blue.
Before we knew it the time had come for your next open heart surgery, It was mid January and you were 5 1/2 months old.
This was to be the easiest of the three we were told.
Back down to Dallas we drove with care
hoping it would go well without any scares.
Here you are the morning of the surgery, not knowing what was to come
It made us feel sad and we desperately wished the surgery was already done.
We waited and waited for a nurse to call us back
you were so patient and your sweetness didn't lack
You fell asleep in daddy's strong arms the hardest part was about to begin.
We prayed and snuggled and it didn't seem real, could this really all be happening yet again?
We finally got called back to the pre-op room,
we played and laughed but the fear still loomed
After playing so much you fell asleep again
it was time for the surgery to begin.
We walked you down the hall as you dreamed, then we watched as they rolled you away
That was one of the hardest moments on that day.
Seeing you after surgery was so very hard to see
you were in so much pain, but you just had to be
one day after your surgery I got to hold you in my arms
You held on to my necklace and knew you were safe from harm.
You were so brave through every pain,
that you had to endure any of this is truly a shame.
Soon we made it to the recovery floor
sooner then expected that was for sure!
You love your daddy so very much
You smile with every reassuring touch
We thank Jesus daily for His mercy in saving you
You are such a blessing, without you we wouldn't know what to do.
4 days after surgery we were leaving Children's Medical Center
You were post Glenn we were excited for the new phase we would enter
Back at the Ronald McDonald House we did snuggle
It was nice to see you happy even though your eating was a small struggle.
9 days after your third open heart surgery, once we were at home, you set up for the first time,
so much faster then expected up the development latter you did climb.
We had a small glitch and your oxygen dropped, to the low fifties
It was time to call your doctor for cardiology.
We had to place you on oxygen because your right diaphragm had been paralyzed
At first you thought it was awful and had tears in your eyes.
Thankfully soon you adjusted as we prayed for it to heal
we had to wait 9 1/2 weeks, but it came back to normal, could this be real.
You love bath time now, though you hated it before
Look how cute laying in your special towel on the floor
This was your first bow that stayed in your hair
Usually a headband you had to wear.
You always pulled your oxygen in your mouth to blow
this always made your sats drop so it was a "no no"
You started holding your own bottle at only 6 months
but you gave that up quickly although that was my fault I have a hunch.
I liked holding your bottle, so I didn't make you,
but after all your my baby and you didn't seem to mind that I do.
Your first valentine's Day daddy bought you a purple rose,
you were so cute from head to toes
You also tried rice cereal for the first time on Valentines Day,
you did really well even though you didn't swallow much so most of it we threw away.
One of the first nice days showing us the hope of spring
We had our first picnic, with snacks, and a blanket and everything.
Some days are harder then others on me,
You seem to always know just what I need
This day in particular the tears came so freely
as I held you, you touched my face as if to say "it's okay to feel uneasy"
I try to be strong when you are near me
but seeing your smile makes me want to make your life easy
At 7 months old you first sat in your highchair
of course I had the camera, this was a big affair
Your first taste of baby food was banana's at 7 months old, you liked them okay
Of course now you eat them almost everyday
Always so happy filling our home with sunshine
We always want to be with you we sure enjoy our time.
enjoying your bath playing with the shampoo
You look pretty cute sporting your new due
Your first hawk inspired by your bath
It was fun to play with your hair it's growing so fast
9 1/2 weeks post Glenn and Jesus healed your diaphragm with NO additional surgery needed!
Our dreams for you He has always succeeded!
We were so happy to lose that long cord
Seeing your whole face again made us once again thank the Lord
You started to love having your picture taken
You would squint and squeal with joy there is no mistaken.
Daddy gave you your first lawn mower ride,
you weren't even scared, you took it all in stride
It took a while for you to touch your feet to the floor
your feet are sensitive after all you have had to endure
This was your first bath in your fun big girl seat
You played the staring game with your rubber duck and you would not give in to defeat
7 months and you finally got your pictures taken
You are the cutest little girl let's not be mistaken
Here you are with the paper where the cardiologist told us about your conditions and where he wrote your "chance" to survive
Here you are today determined to not only survive but to go beyond and to thrive
This is your beloved dog named floppy
he is your soft companion nightly
7 months and sporting your first ponytail
you are so cute right down to every detail
8 months old and as pretty as can be
you make everyone smile you have a special ability
Your first Easter we had to stay home from church, it was a cold and rainy day and we even had some hail,
but since we were safe and warm inside we enjoyed the time as the storms fell
9 months old and quite the doll
You get almost anything you want, I'm at your beckoned call
You got your first tooth on the bottom right
It was about time it came through, it sure liked to keep you up at night
Standing by yourself for the first time at 9 months old
You are far more precious than shinning gold
Mother's day and your public baby dedication at church
We took you out of your plastic bubble that is usually your perch
This was your first set of pigtails at 10 months old
Also your second tooth came through you are such a sweet sight to behold
It was so hot this summer we decided to let you "swim"The cold water made you cry, but you were such a cute gem.
One sock on one sock off, no pants, messy hair,
and messy room, seriously the cuteness is more than I can bare.
and messy room, seriously the cuteness is more than I can bare.
Your first mess to make all on your own,
you rolled and scooted over to your diaper tote... you're bad to the bone.
Feeding yourself for the first time, what a big girl 10 months old
Even with that messy face one look at you and my heart is sold.
Happy Father's Day to the best Daddy ever
truly you two are the cutest together
Daddy is already your hero for sure
You love him so much when you are sad he is your cure.
Always making us laugh
we love to watch you on your learning path
Family date to dinner and ice cream
Life is good and at times is somewhat normal so it seems
You love Oreo's and they were one of your first solid foods
It got all over your mouth but it was chocolate, you loved it... you just knew
You are so far from camera shy, this is your favorite face to make for a picture
You actually pose, we like to think of it as a sugar and spice mixture.
You love to claw at things like eyes, belly buttons, teeth, and camera lenses
This picture captures you perfectly on one of your ornery missions
Your first 4th of July, in your adorable navy dress and hat
you sure looked adorable as you smiled and sat.
You know you are the star
No doubt in comparison we are far.
Sometimes you look sweet
which you are, it's not a cheat
But than you look sassy and that's true too
Just look at that face, look at you
Family picture on the 4th of July
Oh how fast you are growing know one can deny.
This is the home where you have spent your first year
We have lots of love and joy in our memories here
11 months old learning to transfer from your toy to the couch
you can do it by yourself you are really getting around all about
Standing at you current favorite toy
seeing you happy is such a joy
11 months and crawling you're on the move
It didn't take you long to get in the grove
Drinking from your sippy cup
You have it down well, although we have to remind you to tilt it up
Standing in your crib for the first time
I'm sure it won't be long until you start to climb.
I'm sure it won't be long until you start to climb.
crazy hair, and you look like you have an attitude
but you were actually being sweet, not being rude
but you were actually being sweet, not being rude
This is one of your favorite faces to make
I call it your "sassy" face but don't be fooled, we all know it's fake.
standing at 11 months all by yourself and we are SO proud
Though you're not quite taking steps, the cheering we give you is quite loud
Though you're not quite taking steps, the cheering we give you is quite loud
You say lots of words including dadda and momma, necklace, up, and bye bye
you say all done in sign language and you like to play shy.
This last year has been the most incredible journey we've ever had
We couldn't have imagined feeling so happy and at the same time so sad
The truth is that I cry almost everyday it is hard to see all you have been through
there is lot's of sadness but there is joy too
I think the hardest part is knowing there is more to come
You don't deserve the pain you endure but mommy and daddy are with you, maybe that will help some.
We want to kiss your boo boo and make it all well
but sometimes kisses aren't enough, so in constant prayer we must dwell.
Your personality is wonderful and just so bright
That is also what your name means, it means LIGHT!
You are our sunshine
our only Sunshine
You make us happy when skies are grey
you'll never know dear how much we love you
Please don't take our sunshine away.
Thank you for your sweet sunshine that has brightened everyday
We hope this is the first of MANY more birthdays.
And regardless of how many we get to have with you
You should know, Jesus will always be near no matter what you do.
The doctors may use the title "terminally ill" when describing you
But clearly they haven't seen all that our Jesus can do
He has already saved your life over and over again
Who are we to think that what He has done isn't the way He will always be and the way He has always been.
His power is far beyond all our minds can grasp
and even though we fear we know it's best to place you in His clasp
So now we want to wish you a very happy birthday
we hope you feel loved because you are in EVERY way!
Who knew one year could change so much
we cherish the blessing of every special touch
You have taught us to love and care in a whole new way
Every morning is a gift not just another ordinary day.
You are a special blessing, our sweet sunshine,
We hope someday you'll look back and see the miracles that were your lifelines.
I can't believe how far you have come
and just how much of our hearts you have won.
Happy 1st Birthday Ella Dawn, We Love You Forever, Like You For Always, ~ Mommy and Daddy
Posted by Amy at 9:42 AM