| Location | Topeka |
| Age | 1 month, 4 days |
| Cause of Death | Genetic Condition |
| Date of Birth | 25/07/2009 |
| Date of Death | 29/08/2009 |
| Visitors | 3,090 since 19/10/2009 |
| Creator |
After almost a year and a half and two rounds of the fertility medicine chlomid, Willie and I were absolutely elated when we found out we were expecting. My pregnancy started out just like any other, with the all day morning sickness and nervousness of a first time mother-to-be. We found out I was pregnant the beginning of December, and by the beginning of January, I had started spotting. I was petrified that I was having a miscarriage, and our doctor wanted us to come in and do an ultrasound to see what was going on.
We got the surprise of our life when we found out that not only were we having one baby, but there were two tiny babies growing in my belly! Willie and I were in shock, and could hardly speak we were so surprised. We spent the next few weeks overjoyed and eagerly anticipated when we would find out what we were having. When I was 17 weeks pregnant, we had an ultrasound and both of our babies 'showed us the good's'. We were having two boys! And the doctor was pretty sure we were having identical twins! Two baby boys, we could just not be happier!
Four weeks later, we went in for another routine ultrasound. We got another shock that day, but not a good one. One of our babies looked to have a condition called CDH, or congenital diaphragmatic hernia, but they weren't sure, so we would have to go to a specialist to confirm the diagnosis. Two weeks later we were devastated when we were told that yes in deed Baby Boy B would have CDH. At this point we had decided to name our boys William Glen Skaggs IV and Michael Joseph Skaggs. We decided that our baby with CDH would be called Michael Joseph and we would call him MJ for short. At the time we had no clue what we would be in store for once our twins were born.
After numerous doctor appointments and specialists and ultrasounds and MRI's and everything else that needs to be done for a CDH baby in utero, all We could do was wait. I developed preclampsia at 34 weeks and was admitted into the hospital. I was put on bedrest with the goal of making it to 37 weeks, and my boys would induced. Well, two weeks later, at 36 weeks my water broke and I was in labor! I was overjoyed to finally see my boys! After 26 hours of labor and two hours of pushing, I was no where near being able to push the boys out. So I had a c-section, and William Glen was born at 3:26 am and Michael Joseph was born at 3:27 am on July 25, 2009.
After my c-section I was unable to see MJ until 10 pm that evening. My son couldn't have looked more beautiful. However, he was very sick and we were very scared for him. After two days at the University of Kansas Medical Center, he was not showing any signs of improvement. Children's Mercy Hospital has a machine called ECMO, which is a heart and lung bypass. Since KU did not have this machine, and Children's did, MJ needed to be transferred to Children's. Watching him move was the scariest day of my life at that point.
The next day I was released from KU along with MJ's twin, Will. We rushed straight over to Children's and saw MJ. He looked much better at Children's and we got to bring Will in to see him everyday, which was a life saver. It broke my heart thinking that my boys would be seperated, but Children's made exceptions for twins and Will was allowed in to see MJ everyday.
When MJ was six days old, he was placed on the ECMO machine. He was very ill and was unable to get off the ECMO machine and had his repair surgery on ECMO. After his surgery, MJ had a very rough few days. We thought we were going to lose him. But MJ pulled through and started to get better. When he was 31 days old, after 25 days on ECMO, MJ was strong enough to come off of the machine. Again, he had a rough few days, but on my birthday, August 28, he started to make a turn and really do well. At 4 pm that day, something happened and the doctors still don't know what.
We didn't leave the hospital that day and stayed by his side overnight. The next morning he was doing worse, if he even could have. Throughout the day the doctors did everything in their power to keep MJ alive. But then there was nothing else left to do. We made the choice to hold our son and let him know that we loved him in his final moments. The first time we held our son was the last. But we had three amazing hours holding MJ and Will together. August 29, 2009 was the first time our family of four was together and we had to say good bye. MJ is gone, but he will never be forgotten. Thirty five days was not nearly enough, but he will remain in our hearts forever.
Too a special little boy, gone but never forgotten! never met you but you touched my heart! nathan my little one was a twin and had cdh we dont think he was identical! Play safely in heavens playground sweet dreams special little solider xxxx
Dear Michael
The Angels
May angels rest beside your door,
May you hear their voices sing.
May you feel their loving care for you,
May you hear their peace bells ring.
May angels always care for you,
And not let you trip and fall,
May they bear you up on angel's wings,
May they keep you standing tall.
May they whisper wisdom in your ear,
May they touch you when you need,
May they remove from you each trace of fear,
May they keep you from feeling greed.
May they fill you with their presence,
May they show you love untold,
May they always stand beside you
And make you ever bold.
May they teach you what you need to know
About life here and here-after.
May they fill you always with their love
And give you the gift of laughter
Unknown
The tiny rosebud God picked to bloom in Heaven.
The master gardener from heaven above
Planted a seed in the garden of Love,
And from it there grew a rosebud small
That never had time to open at all.
For God in his perfect and all-wise way
Chose this rose for his heavenly bouquet,
And great was the joy of this tiny rose
To be the one our Father chose
To leave earth’s garden
For one on high
where roses bloom always and never die.
So, while you can’t see your precious rose bloom,
You know the great gardener from the upper room
Is watching and tending this wee rose with care,
Tenderly touching each petal so fair.
So think of your darling with the angels above,
Secure and contented and surrounded with love,
And remember God blessed and enriched your lives too,
For in dying your darling brought heaven closer to you.
Helen Steiner Rice
Dear MJ Happy mothers day
REMEMBER ME
I never meant to leave you,
Could I have only stayed,
We would be going on in life,
With all the plans we made.
Now all the hopes and dreams we shared,
Are but sweet memories;
For you to tuck inside your heart,
Now when you remember me.
Remember all the good times,
And all the joy we shared.
Remember how you touched my life,
An how I really cared.
Think back on all the laughter,
And wipe away the tears,
You still have many mimles to go,
And will have many years.
Don't look back...look forward,
This day is a brand new one,
And as you travel on in life,
You'll take a bit of my heart.
I never meant to leave you,
But still your not alone
For as long aw my love lives in you,
I'll near really be gone.
Allison Chambers Cixey
(c) 1995
Heavenly Angel
Dear MJ,
I am truely sorry that you had to leave your mommy, daddy and brother behind. My son was born with CDH as well and he fought for 36 days like you did. But God wanted him there with him and who am I to say No? Although I wanted to scream it from the mountain tops just so that God would hear me!! I know that your mommy and daddy feel the same way empty arms and a broken heart. I know that you are in a better place and you feel no more pain. I know that you have plenty of friends up there. Just like my son Lil Jonathan does so please watch over your mom dad and brother help him to grow up strong because he will be a VERY special child just for knowing you like he did and still does. May God watch over all of you and Bless you all in your time of need.. My thoughts and prayers are with you.....
omg your story sent goose bumps all voer my body, you see am also a mummy of twin boys and like you i found out at 20 weeks one of my sons had cdh, i never spoken to any other twin parent whos baby had cdh, i hope you dont mind me elaving this on here but i just wanted to say that am always here if you vever want to talk and think that you son was bloody gorgeouse such a stunner, a precious little fighter, sounds like he was a little soldier, i hope your other survivng son is doing well love and hugs hayley ps sweet dreams MJ shine brightly in the sky for mummy daddy and your brothr with love , hope u get to meet nathan my son also a twin and also had cdh, floaty kisses .. play safely little man xxxxxxxxxxxx
Some where over the rainbow
way up high there's a land that I heard of once in a lullaby.
Some where over the rainbow
skies are blue and the dreams that you dare to dream really do come true. Some day I'll wish upon a star and
wake up when the clouds are far behind me.
Where troubles melt like lemon drops
a way above the chimney tops that's where you'll find me.
Some where over the rainbow blue birds fly birds fly over the rainbow
why then o why can't I.
If happy little blue birds fly beyond the rainbow why o why can't I.
---
A BRAVE WARRIOR
taken from a friend sharin with our amazing children xxxxxxxxxxx
Before this world had started
Before our lives began
God assigned us all our challenges
Some hard things to withstand
Each of us were given
Some difficult things to do
But God gave his bravest warriors
An extra burden too
So you came to this earth in a body
Broken and quite ill
But life could never take from you
A solid, determined will
You kept your face turned toward the sunshine
Trapped in a body that only knew rain
And chose to see the joys in life
In spite of all the pain
And though your body was oft' connected
To needles, machines and tubes
You bravely faced each day with them
While expressing gratitude
For the chance of simply being here
Though to us it didn't seem fair
To see someone as special as you
Suffer in a body beyond repair
So when you'd honorably completed
Every trial you were assigned
God chose to bring you back to him
Freeing your bright spirit and mind
Sending lote of hugs and kisses
Tiny Angels
Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear....
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren't here for very long....
Why is it, you couldn't stay?
Tiny Angel shook his head,
"These things I do not know....
But I do know that you love me,
And that I love you so".
Author Unknown
♥♥ AN ANGEL FOR AN ANGEL ♥♥
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♥.*.♥.*.~THINKING OF YOU~.*.♥.*.♥
If I could be an Angel,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I know just what I'd do.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I would guard someone special,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
Someone just like you.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I'd be the friend you need,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
Anytime day or night.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
When you need someone to lead,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I'd guide you with my light.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
And if you began to stumble,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I'd reach out my hand to you.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I'd help with all your trouble,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
And take away your sorrow too.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
But since I'm not an Angel,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
By your side I'll stand.
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
And if you begin to stumble,
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥
I'll reach out my hand.
(UNKNOWN)
♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.*.♥.
Sweet Dreams MJ Look after your brother for your mammy and daddy and help him grow nice and big
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