An old song makes a new 'memory'

 A few weeks ago I was at family camp at the Pentecostal church camp, Braeside and heard the song ' Agnus Dei ' which I always thought was called Worthy is the Lamb. Anyway, back in 1990 I bought the album with this song on it because I had been to church camp and learned this song/.  I just loved it and HAD to have the album...and since hearing that Agnus Dei again it's been stuck in my head.  So I decided to look up the words and, well you guys know me, it spoke to me as so many songs do....

                                                                 "Emily"

Caught
In an endless time
Waiting for a sign
To show you where to go
Lost
In a silent stare
Looking Anywhere
For answers you don't know

On the wire
Balancing your dreams
Hoping ends will meet their means
But you feel alone
Uninspired
Well does it help you to
Know that I believe in you
You're an angel waiting for wings
Emily

You
Going through this stage
It's a restless age
Young and insecure
Still
There are doubts to fade
Moments to be made
And one of them is yours

On the wire
Balancing your dreams
Hoping ends will meet their means
But you feel alone
Uninspired
Well does it help you to
Know that I believe in you
You're an angel waiting for wings
Emily

 I am 100% certain that the camp staff played it for us as we were just that... angels waiting for wings, caught in a time of our lives where we didn't know where to go, what to do, unsure, unfocused...and scared.
And when I was listening to this song I thought of how much parts of it relate so completely to how it feels to be a young (and maybe not so young at times too) grieving parent....
Caught 
In an endless time 
Waiting for a sign 
To show you where to go 
Lost 
In a silent stare 
Looking Anywhere 
For answers you don't know 

I remember feeling caught in time, not wanting to go forwards, knowing you can't go back and so unsure of yourself.  I remember watching for signs...signs of why this happened, signs of what could possibly be the purpose of this, signs that my son was with me, that his spirit was with me and signs of where I was to go now, how I was to move on, go forth, keep living.  And lost...oh was I lost.  And that line 'in a silent stare, looking anywhere for answers you don't'.  I think I spent more moments staring off into space, staring out the window, looking off into the great nowhere... searching for the answers that I know now, and I think I knew then, I will never find. 
Grieving parents most definitely do sit on the wire balancing their dreams.  There were so many for that child that they've had to say goodbye to.  Dreams of first smiles and snuggles, dreams of play dates, first days of school, first dates, graduations... so many dreams. And for those of us who've been given the dream of twins it's a two fold dream, a double dream, a mirror image dream....that was shattered before our eyes into a thousand tiny pieces.  I think many grieving parents sit on a wire balancing between sanity and losing their minds too.  Sometimes I felt like the grief would consume me, other times it felt like it was someone else's life or maybe even something I wished I could hysterically laugh at for hours on end and then maybe someone would come, put me in a straight jacket and take me away from this nightmare.  
Feeling alone and uninspired is pretty easy when you are trying to figure out what the heck happened and while you try to pick up the shattered pieces of your life.  I am not sure how we find our way back out of that dark and lonely place.  Everyone has their way, I guess, but I think if you looked, the one commonality you would find would be love.  Knowing that someone believed in me, believed I would make it through this...well that made all the difference some days.  I wish I could say it was a magic turn about, magic cure to the depression that losing my son caused but the fact is it didn't stop the sadness, the negativity, the confusion.  But it did make it easier to tackle.  
And when I realized that I had someone who ALWAYS believed in me and KNEW I was, indeed, an angel waiting for wings...well that made it astronomically easier to endure.  And that really is the key here... we all are angels waiting for wings.  God knows that each of us has a place in heaven with the loved ones who went there before us...we just need to accept that his son came to take away all of our sins, to die for us so that we could die to our sins and those wings become something we can almost touch.  
It sure does help to know that He believes in me and that he has my angel wings just waiting for me.... and my own little angel waiting to fly with me back home.  

Motivational Mondays - Malissa's Honest Account

Today's Motivational Monday guest blogger is someone who has become a very important part of my healing process...and I'm sure til right now she didn't even know it!
Malissa is another TTTS mom.  Her boys are around 2 years old and TTTS survivors.  They beat TTTS and that, alone, is reason to praise the Lord!  But I praise God for other reasons regarding Malissa.  I praise him that he brought her and her humble attitude to my life and to the groups that I help run.  Malissa and a few other moms (Lindsay and Amber amongst others) are moms to two surviving TTTS twins who are humble, respectful and empathetic towards each and every person who has lost a baby to TTTS.  There is are many groups, as I have mentioned, that support those going through it and Malissa (and the other girls) have made it their mission to ensure that no one is left to feel that their story doesn't matter or shouldn't be told.  They make sure that all of our babies have their story told and that the wishes of loss families to not be exposed to things like excessive photos of double survivors or cute stories (and photos) of what double surviving twins have been up to is kept away from the places that offer support.
Having Malissa in my life has helped me to feel like a twin mommy.  She lets me feel safe to remember what it was like to be pregnant with the boys and not be reminded of what I didn't get to have but rather what I did.  And she allows me to see that God has let TTTS and her babies inspire her to do amazing things AND praise him for it!!!
Here is a post she made about a year after TTTS first touched her life, how much easier it was to be a twin mommy then she ever dreamed it could be and how much she was grateful for the changes TTTS brought to her life. Thanks for sharing Malissa!

THURSDAY, FEBRUARY 23, 2012

What a year brought me

One year ago, I woke up in the morning and headed to work.  I was a happy mommy to be expecting identical twin boys.  Everything was just peachy.  Then, that afternoon, a huge storm came in and rained on my parade, or should I say it rained on my LIFE.  One year ago today, our boys were diagnosed with Twin-Twin Transfusion Syndrome / TTTS.

I went in for what seemed to be a "let's just double check" with a new doctor, the amazing Dr. Zaretsky.  During the ultrasound, I could see what was wrong.  I watched the DVD they gave me the other day.  In the very beginning, you can see the tech looking for their dividing membrane.  They are hanging out at the bottom of a big black spot, together.  Previously, you could see a membrane running right down the middle, clear as day.  I don't know why I didn't notice you couldn't see it on this ultrasound.  Then the tech stops and moves the wand around by P's head.  There is the membrane.  Between his chin and his chest, you can see a line.  He was literally shrink wrapped in his half of the sac.  Of course the tech did not point this out to me.  How sad it made me to see this.  There my baby was clinging for his life, and at that point, I just didn't know it.  The rest of the ultrasound went on, and at the end when I saw the 29% size discrepancy, my heart sunk because I knew they had TTTS even before the doctor came in.  I cried.  I cried and cried and my heart LITERALLY hurt.  I am getting upset thinking about the way I felt that afternoon turn long evening.  We went up to cardiology for the boys' ECHO.  By the time this was done, Dr. Z had come up to tell us that we needed to get to Cincinnati ASAP.  He told me they would be calling in the morning, so start planning our trip.  I was also given a prescription for Procardia, which is a blood pressure medication that lowers my blood pressure to help alleviate some of the stress on L.  I didn't know if I could drive home.  My husband and I had met there, so he told me to go home and that he would get my medication.  I was at home crying, telling my mom about everything.  She was living with us at the time.  She comforted me until he got home.  He had lacrosse practice that night, and he went a head and went because he needed to blow off the stress.  I just cried in bed, and took my medicine.  I wanted to be alone.  I tried to get up to use the restroom and immediately almost fell.  The medicine took some getting used to!  I am not sure I slept that night because I spent much of it praying and crying.  I woke my hubby a few times crying, I do remember that.  This was my darkest day.

Throughout the rest of my pregnancy, I struggled.  I struggled a lot more than I ever told anyone.  You just DO NOT know the fear a mother has that she is carrying a baby (or two) that has a grim prognosis.  There's nothing to be done.  You can't change it.  You pray and pray, but still it hurts.  Wondering if you will have a heartbeat (or two) at the next week's ultrasound.  Being on bedrest, you have PLENTY of time to think of the what if's.  I prepared myself to lose my little man.  I prepared myself to have to return one of the cribs we had finally picked up.  I couldn't buy anything for them, because I didn't know if there was going to BE a them.  It wrecked me.

On the flip side, I spent a lot of time in prayer.  My relationship with God had turned into a full on plea.  I begged Him every day to save these boys.  I eventually was able to buy some things for them, knowing that if I did lose one, I would have to return it.  Their innertwin membrane ruptured, I was told I would have to be admitted to the hospital soon, and I looked at it as the lessor of bad things that could have potentially happened.  I was heavily tried when I could feel them switching sides.  Their bodies would cross over one another.  I thought they were going to get tangled up before I could get to the hospital.  They only did that for a few days thankfully, because my positive attitude I just found wasn't so positive.  I had a couple panic attacks, but I just kept praying and praying.  Slowly, I began to see the positive in things as the weeks passed by.  Going to the hospital was hard, but it really wasn't that bad since I got to hear their hearts beat several times throughout the day.  I could finally relax and stop wondering.  I spent EXACTLY 3 months on bedrest.

After my boys were born, again I was changed forever.  Not just because I was a new mother, but I knew I had them; they were HERE.  They made it.  They survived.  My prayers, and the prayers of thousands of others were answered.  My faith was strengthened, and my outlook on life was forever changed.  I look at people differently.  I used to get frustrated at strangers,  but now I give them the benefit of the doubt.  Maybe something big is going on in their life.  Maybe they've just lost a loved one.  Maybe they really are just a jerk.  Regardless of the situation, EVERYONE needs a prayer.  I look at so many more things with gratitude.

I have met some mothers online in TTTS support groups that have lost one or both babies.  Their strength encourages me.  I know they'd kill to be in my shoes, and I'd kill to do anything I could to have saved their babies.  This is something very sensitive and personal to me; and until you've been there, I don't expect you to understand why I shed tears over other's lost babies.

Maybe there is a reason why being a twin mommy is so much easier than I thought it would be.  I rarely let myself get frustrated with them.  Maybe yet again it's my subconscious reminding me that I killed for both of these babies to stay alive.  They cry, they fuss, they annoy me, but just as I'm about to get mad, I can't.  There are moms with just one baby that would die to be in my shoes.  I whine about it being so difficult to do things and get out of the house with 2 nap schedules to work around, then 2 car seats to load up, I can't take both of them to places with small shopping carts because that would mean I have to use my stroller, and you can't push a shopping cart with a stroller, so you can only pick up a few things.  Sometimes I get down about this, but again, I remember just how lucky I am to have these two little blessings.

In a year I dealt with the most traumatic experience of my life.  In a year I became a mother.  In a year we doubled our family.  In a year we sacrificed my income.  In a year, we became truly blessed.  As I look back on what the past year has brought me, all in all, I am a better person than I was before February 23rd, 2011.

Motivational Mondays - Micah's Inspirational Existence

Today I am featuring another TTTS related story...with a twist.  So far my guest bloggers have written about what they have done with the after affects of a trial of life.  And today's guest, despite that not being the focus of her post, has done this too as Melissa is much like me...ever present in TTTS and twin groups supporting and educating those who are going through this disease or have the potential to walk down the path our footsteps have taken.  But today I have asked her to show us another side of the inspiration of these trials... the view of the world from the eyes of her very special survivor, Micah.  Or maybe I should say the view of the world surrounding  her very special survivor.  Enjoy Micah's story just as I am sure that the other's in Micah's life truly enjoy him.

When Jodie asked me to be a contributor to her blog I was a little bit surprised- it seems

like most of her contributors have all "done" something. Service organizations, world

wide Facebook events, fundraisers for awareness, etc. I really wasn't sure why she was

asking me, or what I could even say. But in her request she asked me to share Micah,

my surviving twin, and how he inspires me and others, and maybe a little of how I have

chosen to react to my trial that started with TTTS. And that, I can do.

Meet Micah:

He loves being outside, hearing cars, and airplanes and helicopters and especially

birds. He likes reading books, and turning the pages. He loves music, and has his own

lists of his favorite songs. When his favorites come on he gets extra excited and starts

dancing. Micah is a typical boy who loves playing on the iPad and thinks any noise

related to gas is hilarious, along with any other unexpected sound- like things blowing

up on Mythbusters. His giggle is one of the most delightful things in the world- and

anyone who has heard it tries hard to make him do it again. He whines when he doesn't

get what he wants, throws a tantrum when his little brother steals his toys, and cries

when things make him sad. One of his favorite things to do with people is give them

High Fives. He also loves the feel of hair and will be your best friend if you sit next to

him and let him play with your hair. Watch out though- he is sneaky and will catch you

off guard and yank a piece out just so he can play with it. The most special thing about

Micah is the joy he brings into people's lives. Micah loves people, and loves life. People

-young and old- can feel this and they love him because of it.

• When Micah was less than a year old a complete stranger who had sat behind us in a

church meeting took the time to find out our names and address and write us an

anonymous note just to tell us how much looking into Micah's face impacted her and

how special he was.

• My cousin who was going through a very difficult time in her life would come over and

just hold him and play with him - because he made her feel better.

• My sister-in-law was sitting at work about a year after Micah was born (she worked at a

lab at the university she was attending) when one of her co-workers started proclaiming

that any pre-term baby that was sick, or had brain damage should just be "let go" (to put

it in kinder terms). That all they would ever be was a burden on their families and

society at large. That it was not possible for them to have any quality of life. She tried to

ignore him and not listen (she is very reserved and not confrontational at all), she finally

had enough and said "my nephew was born at 28 weeks, the doctors thought he was

going to die, he is severely disabled and he is the best thing that has ever happened to

our family".

• When he was three and started riding the bus to pre-school the bus driver would tell me

how everyone loved him and the pre-schoolers would all have to say hi and bye to him

every day.

• We had special people when we went to church that volunteered to watch him so we

could go to our classes- and despite us having moved three or four times since then still

love him and have a connection with him.

• We have children down the street that think of Micah as their special friend and talk

about "remember when we did this with Micah and that with Micah", and are sad that we

are leaving. (Moving again :-)

http://www.youtube.com/watch?v=2P7YZSf8hQg (This is a video I made for family for this past Christmas- you can meet Micah better by watching this than by anything I can say)

If you couldn't tell, Micah is a special little boy. A special little boy with special needs.

Micah is severely disabled. At the age of six he is not talking, not walking, and is starting

to learn to sit up. He is on a puréed/liquid diet, and just started self feeding- using a bottle- at the age of four and a half. He has Cerebral Palsy, Chronic Lung Disease,

Optic Nerve Hypoplasia (his optics nerves are smaller than they should be so he is

visually impaired- he can see but we don't know what). He also has Hydrocephalus and

has gone through 10 brain surgeries related to that- three of them in the first six months

of his life.

Spencer and Micah

Micah and his identical twin brother Spencer were born three months prematurely, due to

complications from TTTS. (You can read the full detailed story here: http://katbiggie.com/ttts-tuesday-micah-and-spencer/ )

Four days after they were born the doctors suggested that we

let both of our boys go due to the assumption that they were going to die anyway... They

were both extremely sick, and had both sustained enough brain damage that the NICU

doctors - who see sick, premature babies every day- were shocked. But we couldn't- we

had prayed for, worried over, loved these babies more than is possible to describe, we

believed that miracles were possible, that God does answer prayers, and had faith that

if it was God's will, we would be able to take our babies home (something the doctors

said that even if they survived might not be possible). So we prayed, and our prayer

became "Heavenly Father, we love these babies, these precious sons. If it be Thy will,

we would like to keep them here with us. However, if that is not thy plan then we will

trust you in that as well. So, if it is all right with thee, we are going to hang on to them as

long as they stay the same or get better. If they get worse then we will know they are

being called home and we will let them go". Four days later our sweet Spencer, Micah's

special twin, got worse. With nothing else the doctors could do even if we wanted, he

died in our arms. The first and last time we held him.

That same day doctors suggested we should let Micah do the same thing, say good-bye

in our arms, because it was only a matter of time. We almost did- why put off the

inevitable? But then we remembered our prayer, and we chose to hold on until we were

shown differently.

And Micah didn't get worse- he stayed the same, and then he got better. Well enough to

come home after 96 days with nothing more than oxygen and an NG tube (to

supplement his bottle feedings) and the NG tube lasted only a day.

Micah has four older brothers including his guardian angel Spencer, and two, soon to be three,

younger brothers. Not one of them has ever shown any resentment of Micah and the

care and time required to take care of him. When I ask them what they remember of

when Micah came home and things were most intense their favorite memories to share

are all the things they "got" to do to help me out. Every morning when they leave for

school, and every night when they go to bed they don't go until they have given Micah a

hug. My younger sons love being around him, (sometimes more than he likes) and Zach (closest in age) has become his little helper, bringing him toys, turning his videos on/off, helping him play on the iPad. All of my boys have become unselfish, service minded, accepting, loving confident

patient people. Most of that due to our life with Micah, and the love he shows us.

As a mother of an angel, and a mother of a son with special needs, I have heard many

times the sentiment "the Lord only gives you things you are strong enough to handle"

and a similar one "how do you do it? I could never do what you do".

Losing a son is not easy- grief is a harsh road to travel. Raising a son with special needs is not easy. Physically, mentally, emotionally, even spiritually sometimes, it is draining and taxing. However despite all of that most days I am able to go about with a smile on my face, with joy in my heart and more importantly- peace. I am able to do that because I have chosen to trust God- completely- and I try to keep an eternal perspective.

I believe that our Spirits- that part of us that makes us us- existed and lived

with God before we came to earth. I believe that life continues after this earth life, and

that the portion of our eternal lives that is spent in mortality is actually only a small

portion of what and who we are/will be. I also believe that while mortality is short, it is

crucial in determining what our eternal direction will be. I believe that innocent children,

and those that are as innocent as little children (I.e. those who do not know right and

wrong) automatically receive the highest of God's blessings. My religion teaches that

when we pass from this life we continue being us, with our same personalities, and

talents, and that we keep the knowledge we have gained. We also keep our

relationships, and people have the opportunity to stay as a family unit for eternity. Heaven is a busy place because those who have passed are busy preparing for the

Second Coming of Jesus Christ, and those who never learned of Christ are being given

the opportunity to do so.

I find comfort in believing that my angel son Spencer is busy helping his Heavenly

Father, and that when Resurrection Day comes, I will have the opportunity to raise him

from infant to man. Just as I would have had he lived, but at a time when evil will not exist. I find joy in knowing that he will be my son forever.

I firmly believe that Micah was given the choice to stay or join Spencer, and that he

chose to stay. Knowing that staying was his choice, and believing that this life is not all

there is for him, that his imperfect body will one day be perfect, gives me peace on the

hard days. More importantly though, his joy, and the joy others receive because of him

let's me know that our choice to give him a choice- to keep fighting to come home- was

the right choice.

Because of the peace I have been blessed with, I try hard to share a sense of peace with others. It is my hope that because of the increase of charity, of empathy for the heartache all around us that I have been blessed with, I am able to make a small difference for the individuals around me. I hope that through my interactions with them they will feel a small glimmer of the love that Heavenly Father has for each of them. Micah and Spencer have taught me that.

I said earlier that I often hear "God only gives you what you can handle." The truth is

that trials are not given to you according to your strengths. You have trials and God

gives you the strength to make it through, increases your abilities to do things you don’t know how to do, and blesses you with peace despite the trial.

From Micah I have learned that joy is a state of being. Joy in life is never impossible, and with him around- it is even less so

How to Save a Life

So today we were driving home from the church picnic (awesome time by the way) and this song came on the radio. We were listening to 'The Message' on Sirius radio so I knew that there had to be some sort of Christian overtone to this song and I was so curious about it because it had never come across as a song of faith to me.  To be honest it always reminded me of Grey's Anatomy.  I don't remember all of the times they used it but I do remember the one that stuck out in my mind the most.   The episode was very emotionally charged and very uniquely done as the cast sang numerous songs through out it. It was the one when they were trying to save one of the doctors as well as her unborn baby. And I'm sure you can imagine that the 'unborn baby' part was what struck such a cord in this episode for me.
Anyway, like I said, I had never thought there were any Christian ties to this song and so curiosity got the best of me and I had to look it up.  Turns out it actually doesn't have a direct faith connection but it is a song written by a band where every single member is a Christian and there roots are very faith based.  Because of this it has become a 'cross over' song and has lyrics that have been pretty thought provoking in Christian circles.
It was actually written by one of the members who had struggled to support a young man at a camp program who had a very serious addiction problem.  So the song is written from the perspective of trying to help someone, to help save their life and just how hard that can be.  I thought I'd share the words and some things that came to me when I listened to it....

How To Save A Life :

Step one you say we need to talk
He walks you say sit down it's just a talk
He smiles politely back at you
You stare politely right on through
Some sort of window to your right
As he goes left and you stay right
Between the lines of fear and blame
You begin to wonder why you came

CHORUS:
Where did I go wrong, I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Let him know that you know best
Cause after all you do know best
Try to slip past his defense
Without granting innocence
Lay down a list of what is wrong
The things you've told him all along
And pray to God he hears you
And pray to God he hears you

CHORUS:
Where did I go wrong, I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

As he begins to raise his voice
You lower yours and grant him one last choice
Drive until you lose the road
Or break with the ones you've followed
He will do one of two things
He will admit to everything
Or he'll say he's just not the same
And you'll begin to wonder why you came

CHORUS:
Where did I go wrong, I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

CHORUS:
Where did I go wrong, I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life
How to save a life
How to save a life

When I was researching this song I came across some others who were inquiring as to whether this song was about trying to bring a friend to Christ or maybe even about the Lord trying to save our lives.  The response was, of course, no as it was written for someone with an addiction but that, as with all music, it's up for interpretation.  And so I thought maybe I would spend some time on interpreting.  

When I first heard this song I actually heard it as part of the scene  after Denny dies in Grey's anatomy...as part of this video and to me that was all this was about...about trying save a life medically and it not working.  I hadn't seen the whole episode but I ached for Izzy... this was long before I knew grief so intimately.  I couldn't imagine how hard it would be to try so hard to save a life and have it fail.  

And I've often wondered if that's how God feels at times.  He tries so hard to save our lives and some people are just bent on destruction.  It comes in so many forms but the ones that jump to my mind are addiction, mental illness, self-abuse, jealousy, greed and gluttony and selfishness.  

Have you ever tried to save a life?  Have you ever had someone try to save yours?  What a frustrating process it must be and how easy it is to deek left while someone else goes right.  I hadn't really thought that I'd been on either end of this but I realize now that I have.  Saving someone from themselves, even if it comes with the motivation of saving yourself from what they inflict upon you and those you love, is a very difficult job and one that comes with it's own set of baggage, it's own consequences.  Trying to tell someone that you see them on the path of destruction is hard.  Trying to push someone from the path and into one where they can get help is even more difficult I think.  If they aren't ready to hear it, ready to see it, then they just can't be bothered with you and your 'advice'.  For me it has come at times when I could so clearly see (and hear) that rationality was gone, that judgement was off and the inflicting wounds, especially on those around them, were deep and painful.  Sometimes it doesn't work, sometimes you just have nothing left to do but walk away and wonder why you came.
But when it works...oh my is it worth it.
The thing about God is that he's everywhere...you can't outrun him, you can't hide from him.  I mean look at Jonah...he ended up in the belly of a whale and still God found him and saved him.  God won't give up and when he saves us there is a great party in Heaven.
Luke 15:10 In the same way, I tell you, there is rejoicing in the presence of the angels of God over one sinner who repents."
Luke 15:7
I tell you that in the same way there will be more rejoicing in heaven over one sinner who repents than over ninety-nine righteous persons who do not need to repent.

God will stay up all night, he knows how to save a life. 

And what about when it does work...like this other Grey's episode of when this song was done.  This is the one that makes the hairs stand up on my arms, makes me tear up and remember the fear, the worry, the emotions that went along with my TTTS surgery, Cam's blood transfusion, the follow up appointments, the rushed trip to Toronto when my water broke and how often in those first few days when Cameron didn't move for long periods and I was sure he was gone...and of course the moments prior to his delivery by c-section.  It is the most horrifying position to be in... to need a life saved and be able to do nothing about it, for it to be all out of your control but instead in the hands of the doctors.  And sometimes that doesn't work, it isn't possible.  But sometimes that heartbeat is found, that cry is heard, that joy is found.  And whose control is that in... the Almighty Father has his hand on everything...though so often we forget to thank him.

Isaiah 49:16 See, I have engraved you on the palms of my hands; your walls are ever before me.

It's not the doctors who are in control, not the doctors who are saving this life, but God.  The difficult thing comes when the 'how to save a life' isn't the way we see 'saved' happening, that the saving happens to be the ultimate healing in heaven and when the life saved isn't the one who is sick, hurt or suffering but rather the lives saved are the ones left behind.  I am one of those.  I prayed that God would safe a life, prayed that he knew how.  He answered my prayer.  He saved me! 
We can only pray that those who need to be saved will allow God into their lives, their hearts and allow him to perform whatever saving methods he needs to.

Motivational Mondays - Christina's story

Today's guest post is from another fellow 'TTTS Survivors with Guardian Angels' momma, Christina.  Her story is much different then mine and yet the underlying current is the same... we see daily what could have been.
She experienced her TTTS journey almost exactly a year after mine...our 'angel' days are only 2 days apart and our survivors were born at similar gestational ages.  We met online in the first few months after her boys arrived and right away she impressed me with how active she was in helping others.
She and some other moms have found a wonderful way to support other families who are grieving a loss from TTTS and I am pleased to share her, their boys story and her project with you.

I found out I was pregnant the week after July 4^th 2010. It was my first pregnancy and just like all first time parents, my husband Jason and I were both nervous and excited.

A few weeks later I experienced some spotting and I nervously called my GYN office.

The doctor told us to come in right away for an ultrasound. I remember holding Jason’s hand on the way into the office and telling him, “I can’t loose this baby.”

Twenty minutes later I found myself laying on the examination table for an internal ultrasound. The doctor took a look at the screen and said words that no woman in that position wants to hear…”Hmm, this is interesting!” “What’s interesting?” I slowly asked.

“This is one fertilized egg, this is a sack, and this is another fertilized egg.” After a few moments of stunned silence I said “Twins?” My husband got up from his chair in the corner of the room and peered nervously at the screen. “Are their any more in there?” he asked.

We laughed and she assured us that it was just the two of them and that it was too soon to tell if they were identical.

My husband and I walked back to the car in stunned silence that slowly turned into excitement. Jason was especially excited as he is an identical twin.

The first person I called was my friend Kristi. She had two miscarriages and I called her as soon as I started spotting. She had been praying for me all morning.

“I have good news and interesting news.” I told her. “What’s going on?” she asked. I could hear the apprehension in her voice. “Their both fine!”  “No way,” she replied. She sounded as stunned as I had been just a few minutes earlier. This was the first of many such fun phone calls and encounters we would have that day.

At 14 weeks, we found out that our twins were identical. I posted about this on Facebook and soon I received a private message from an old college friend.

Her name was Tova Gold. I had gone to college with her and hung out with her often. We had not kept in very close touch over the years and months later she told me how nervous she was to write me this message.

You see she knew I would not want to hear what she had to say. No one wants to hear what she has to say because no one wants to believe that babies die. Yet she took a risk and shared the story of her daughters who are forever nicknamed Sunshine and Daisy.

Sunshine and Daisy were also identical twins. This means that like my boys they came from one egg that split (mono chorionic), lived together in one sack, and shared the same placenta. This is the most dangerous kind of twin because it means they are at risk for Twin to Twin Transfusion, a disease that is caused by an imbalance of the way the babies receive food and nutrients from the placenta. Sunshine and Daisy had succumbed to this disease in 2009.

She assured me that this disease does not happen to all twin pregnancy’s and that she didn’t want me to be upset, she wanted me to be informed so that I could be proactive about this disease and the pregnancy.

She sent me the link to her blog and also the link to the Twin To Twin Transfusion Foundation web site. I began to research the disease so I could become informed in case the worst happened.

I continued to research the disease and I found out that signs of TTTS could pop up around 16 weeks. Before our 16 week appointment I sent out an e-mail to all of my friends and family to please pray that we would not get bad news at our ultrasound.

I was so nervous on the way to the doctors that day. I received a text from my friend Kelly that read “don’t be nervous, I just know you will find out that they are two healthy girls.”

She was half right. That day we found out we were having two healthy, identical twin boys. Another set of Sporer twins to rival my husband and his brother. Both boys looked healthy and seemed to be growing as they should.

Now that we knew the sex we could start to have fun. We went to Babies R Us to register and picked tons of cute matching outfits for our boys. Two of everything. Two cribs, two high chairs, two teddy bears….

Then came our week 18 perinatologist visit. The usual routine was that the ultrasound tech would scan the twins and print the pictures. At the same time the pictures were able to be viewed in the perinatologists private office. Most times the tech would just show him a few of the pictures after we were done. Some days he would come in for a short consultation but other times we would not see him at all.

The scan of baby A seemed to be fine. We got a lot of good shots. He was being still and behaving. Baby B looked like a crazy person. He would not sit still! We joked that he would become our problem child.

Now the scan was done and Jason wanted to go get the car while I saw the doctor and got dressed. This was our normal routine but today the tech asked him to wait. She also asked the student technician to wait up. The two technicians went out into the hall and then Jason and I waited for them to return. My anxiety was mounting as the minutes ticked by. I looked at him and said “Something’s wrong.” He tried to reassure me but I could tell that he felt it too.

Finally the Perinatologist came back and uttered the words that we had been afraid to hear. It was stage 1 Twin To Twin Transfusion. Baby A was so still because he was saran wrapped in my uterus with 1.5 cm’s of fluid. Baby B was so wild because he was overrun with 8.5 cm’s of fluid at the largest visible pocket. 

The doctor told us that he was going to make us an appointment at C.H.O.P (Children’s Hospital of Philadelphia) for that coming Thursday but in the meantime he would like to perform an amniotic fluid reduction on Baby B that would hopefully stabilize the T.T.T.S.

Jason held my hand as I lay on the table surrounded by Dr. Aroldi and several of his assistants. I couldn’t look at the screen or the needle so we changed the subject at talked about our favorite vacation destinations. I also spent a lot of time praying.

When he was finished I remember the Doctor said that Baby A, the “stuck” baby gave a little kick. He took this as a sign of hope that he would be okay.

We went home from the hospital and began to call our friends to deliver the sad news. I remember lying on the couch and sobbing uncontrollably.

The next day I called Tova and we had a long conversation about T.T.T.S and the many options that might lie ahead. I was so grateful to have her to talk to.

Finally it was Thursday and time to get up at the crack of dawn to drive to Philadelphia. We had a day long appointment at C.H.O.P. 

The synopsis of the day was that both boys were alive and seemed small but healthy. They had reached stage 1 TTTS but they were not candidates for surgery at this time because the amnio-reduction worked and fluids remained balanced. If the fluids became unbalanced throughout the pregnancy we would re-visit the option of surgery. The recommendation was made that we have 2 ultrasounds per week to monitor the twins.

We walked out into the night sky feeling hopeful about our situation. I told Jason I would like to name them. I called Baby A Chase. This is the name that I picked. I wanted to name the weaker twin. Every time I thought of him giving his little kick after the amnio I would start to cry. I worried that I would never get to hold him in this lifetime and I wanted to give him the one thing that I could- a name. Baby B was called Tyler. I figured that he would be with us and it would be nice to let Jason name his surviving son.

As the weeks rolled on we became more and more hopeful that all of us would come through this pregnancy alive. The ultrasounds all went well, fluids remained stable and both fetuses continued to look small but strong.

At our 21 week ultrasound Dr. Aroldi told us that he was very pleased with the results and was looking forward to watching us raise two healthy twin boys.

At this point I started to let down my guard. I believed that we were out of the woods. That T.T.T.S was a nightmare that occurred in the beginning of my pregnancy but would almost be forgotten by the end. We went back to behaving like “normal” first time parents. We took a tour of the hospital, began to plan the nursery, and I even bought a set of new matching stockings for our whole family.

Then came the second week in December 2010. I woke up on Wednesday December 15^th and prepared to go to my perinatologist appointment. Ever since we found out about the T.T.T.S we always made sure that I wasn’t alone for my appointments. If Jason had to work I would bring my mother or a friend

Jason did not have to work that day but he had been out late with his friends. I felt like something was wrong and I begged him to come with me but he refused. He told me I was over-reacting and I would be fine.Something did not sit right with me. I knew I shouldn’t be alone but by this time it was too late to find someone to go with me so I got in my car and drove to the doctor’s office.

Twenty minutes later I was laying on the table as my favorite ultrasound tech Jennifer (the one who had assisted during my amnio reduction) rubbed warm jell over my tummy. The scan of Chase went well and then she moved on to Tyler. She rubbed the wand over my belly for several seconds before she exclaimed “I can’t find a heart beat” and laid her head down on my stomach.

It wasn’t a complete shock. “Does this happen often?” I asked her, and she shook her head no. I asked her what would happen now and she told me she had to go get the perinatologist.

Dr. Bell was on duty that day. He entered the room after a few minutes and offered me his apologies. He looked at Tyler and then did a check up of Chase who seemed to be doing okay.

He told me that he thought I would have to deliver that day. “At 26 weeks?” I whispered. “He won’t be the smallest one in there.”

I got dressed and Jen walked me to the hospital, which was attached to the Doctor’s office. We had to go to C3 which was the third floor of the Centennial Wing, the high risk pregnancy floor.

Jennifer introduced me to the RN on duty, Shelly, and she walked me into a large empty hospital room. It was set up to hold two patients but thank God I was alone. She had me take off my shirt and put on a belly band and hospital gown. She let me keep on my jeans. She applied more warm gel to my tummy and strapped on a fetal heart beat monitor and a contraction monitor.

She inserted a catheter into my hand in case we needed to do an emergency c-section, I would be hooked up to I.V’s. Then she left me alone. There I sat listening to the sound of hope, Chase’s heart beat going thump thump thump thump thump.

Jason got to the hospital before noon. We spent most of the day calling relatives and watching T.V waiting for something to happen. By early evening we were joined by Dr. Aroldi and Dr. Unger the neonatologist. He explained that a fetus has a very high rate of survival outside the womb after it reaches 28 weeks. My son was only 26 weeks. Our goal was to keep me pregnant until the 28 week mark and then evaluate from there.

Delivery at 28 weeks probably meant a surviving child but it did not necessarily mean a healthy child. If born that early, Chase would be at risk for blindness, birth defects and cerebral palsy.

As it already stood we didn’t know if Chase suffered any brain damage or illness from the passing of Tyler. There is always a chance that the twin who dies can bleed out into the surviving twin and cause brain damage. A fetal M.R.I could tell us this for sure but we would have to go back To C.H.O.P to have this test. We are a pro-life family but even if we weren’t 26 weeks is too late to get an abortion so the option was not on the table. We were in it now, for better or for worse. The only thing we could do was pray.

The plan was to keep me in the hospital until 28 weeks. I would have an ultrasound every morning. At 28 weeks we would re-evaluate the situation.

The next two weeks seemed to drag on forever.  I settled into a daily routine of wake up, have breakfast then an ultrasound. Shower, dress, and spend two hours calling/texting/facebooking everyone I knew to report the news. Thankfully it was always good news. No sign of brain bleeds, strong heart beat, looks healthy.

About two days before New Years Eve. I had passed our goal of 28 weeks and Chase seemed to be fairing well. The doctor let me go home for the remainder of the pregnancy provided I went to the perinatologist office for daily ultrasounds and NST’s. 

The ultrasounds continued to look good well into January. It wasn’t until the last week of January, 2011 that Chase’s cord blood flow numbers started to decrease every day. The first “bad” ultrasound occurred on a Thursday. By Monday I was a nervous wreck. I was worried that we would lose Chase too. Dr. Bell agreed that it was time to “pull the plug” and agreed to induce labor that night.

Jason and I checked into the hospital late Monday afternoon. We tried to induce labor but I would not dilate. Around 9pm on Tuesday Chase’s oxygen levels started to fail and I was brought in for an emergency c-cection.

My Twins were born around 10 pm on Tuesday, January 25^th. Chase was rushed to the NICU and I got to spend some time with Tyler. I wasn’t prepared for how he would look and I didn’t hold him. This is my biggest regret in life. I can’t wait to hold him some day in heaven.

Chase spent almost 1 month in the NICU. He came home on February 18^th 2010. He is now a healthy and happy 2 yr. old and is the light of our lives.

About 1 year later I was chatting on-line with a bunch of other T.T.T.S loss mom’s. We all recognized the need to support mothers who are going through a new loss.

We decided that we would join together to form the T.T.T.S support team and I volunteered to be the leader of this group.

Two years later we now have 33 active members from all over the world. Some women send packages and others donate items to our group. We have had many different donations including hand made jewelry, soft slipper socks, T.T.T.S rubber “cause bracelets”, and Teeny Tears diapers for still born babies.  

We have sent approximately 69 packages to loss mom’s located all over the world. Each package is sent at no cost to the recipient, they are paid for and put together by another T.T.T.S mom.

If you are interested in receiving a package or learning more about the T.T.T.S support team you can contact me at Christina Russo Sporer on Facebook or E-mail me at chrissporer1122@gmail.com. Put T.T.T.S Support Team in the title of your e-mail.