Cecilia Winn Propst at OneTrueMedia.com

Make photo slide shows at www.OneTrueMedia.com

Happy 11th Birthday ...

I don't just think of you on your birthday, I think of you every day. Like my shadow, you are always there. No one can experience having a beautiful baby girl and then having to let them fly - and it not being with them always. It is a privilege to be there for a birth, it is an honor to be there for a death.

Death isn't the end, if you are faithful, you know there is much more to life then the struggle we have here.

I see you in the sunshine, I hear you in a child's laugh, I feel you as a breeze caresses my face. A spirit like yours could never be contained. And I silently remember.

You are always my Friendly Shadow, many don't notice but I always know you are there.

Happy 11th Birthday Cecilia. I love you to the moon and back.

Cecilia Winn Propst at OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

What is it Like to Have a Baby with Congenital Diaphragmatic Hernia

Imagine that you and your partner are expecting a baby.  The thrill of the whole thought – another little being.  The whole thing is a bit overwhelming and exciting.  About the time many are diagnosed, is the 20 week ultrasound.  Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born.  Whose mouth and nose does this little one have?  No one expects to be told their child has something wrong. 

You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs.  Then they see that something isn’t right.  It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose.  In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia.  The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues.  They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.

You are then told there are options.  Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one.  It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too.  Your insurance coverage may not cover such a procedure.  It is highly experimental even today.  One day it may not be.  You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too.  They may require ECMO, a heart lung bypass in order to save their lives.  To imagine your unborn child hooked up to a heart lung bypass?  It is overwhelming.  This isn’t supposed to happen.

You will also be given an option to terminate the pregnancy.  You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester.  You are not supposed to be making life and death decisions for your child.  You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father.  Those worries are enough in themselves. 

Now you are given options if you were prediagnosed prior to birth.  You must make these decisions that will not only affect your lives, but your whole family.  You will wonder if your choice of hospitals is good and question if you should go to another.  None of the choices are easy.  You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child.  Many times there are none.  Sometimes there are other issues. 

Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination.  Only other parents who have been there and done that can relate to this.  Many of us were asked, “How can you?”  We just do.  We have truly little choice in the matter. 

If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma.  You wanted this baby and you chose not to have them suffer.  It is not a selfish act but a selfless one.  Some will state if you didn’t go full-term this child doesn’t count – so not true.  You will also change because of this experience. Your child will never know the pain and will always be in your hearts. 

If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure.  If you are the mother, you will have this constant reminder moving and kicking within you.  If you are the father, each time you see your partner, you will have this reminder.  The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.

Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress.  They whisk the baby away and start intubation and assessing the condition of the infant.  You may not hear anything for hours.  Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you.  The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate.  Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment.  You are in shock.  What in the heck is a congenital diaphragmatic hernia?  How did that happen?  Why didn’t they see it before?  When can I see my child?  When can I hold them?  Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.

Both will sit by the bedside and pray, hope and wonder what is next?  You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon.  This isn’t supposed to happen this way!  Why your child?  No one can give answers to that question.  You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour.  Sometimes you cling to just a good minute.

If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth.  This is a slow process.  It takes time and patience.  Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions.  You wonder how you are going to take care of this once fragile infant at home.  You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs.  Your best friend will be anti-bacterial soap and hand sanitizers.  (Next to an abundant supply of burp cloths for the reflux.)

And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do.  That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”.  The most unselfish act in the world is to tell your loved one, “It is okay to go.”  They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase. 

It takes courage, faith, strength you never thought you could have to endure having a child with CDH.  You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before.  You will also know that no matter what life throws at you now, it is small compared to what you have endured.  

© Breath of Hope, Inc 2010

All Children are Miracles...

"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him." -Pablo Casals

Congenital Diaphragmatic Hernia Awareness Day...

Happy Hanukkah

Beautiful Quote...

When angels visit us, we do not hear the rustle of wings, nor feel the feathery touch of the breast of a dove; but we know their presence by the love they create in our hearts.

Happy 10th Birthday Cecilia...

A Great Soul services everyone all the time. A Great Soul never dies, it brings us together again and again. - Maya Angelou

Some may not say you are a great soul - but you will always be in my heart. The lessons you left, the lessons I've learned - I'll always admire you for them. I'm still learning and that is important in this mortal world. Some lessons are harder than others.

Then there is the acceptance of everything that has unfolded in my life that has connected me with others. I accept that you chose wings over feet and can't say I don't blame you! It took time to be at peace with that acceptance too. The selfish me wanted you here with me no matter what the consequences, and now I know it is as it should be.

It is acceptance that others might feel when they understand their child will not always do what they think they should do, or that their spouse is incapable of putting the toilet paper on the roll. You hit the serenity of it all - and just move on to more important things that need to be focused on.

I will always honor your life, be in awe of it, welcome the signs you send every now and then and always love you more and more every day. I also accept that you are the child I must love in my heart - spiritually. Learning to do this and accept this takes me, I believe to an enlightenment many never know. (Many I pray will never know.)

Happy Birthday Baby Girl - until we meet again...with love from the moon and back,
Mommy

Time Heals All Wounds?

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. - Rose Kennedy

As a Mom who also has had a child choose wings over feet, as someone who has experience life - I have to agree with this quote. I think we accept more of life's unfairness, we endure the storms and enjoy the sunlight when it comes. We always remember and from our experiences it shapes us to the people we become.

Transformations through Grief

When a parent looses a child, there is no word for it. When a child looses a parent, they are an orphan. When a spouse looses another, they are a widow or a widower. We are all at a loss of words when a family has a child die. The best thing anyone can offer the other is their heart and a hug.

I have been thinking a lot of my own grief, others grief and what it all is about in this whole process. How I've transformed and how others have also. We are never as we were before and that can be frustrating for us and for those around us. We loose friends, relationships we had once prior are no longer because we learn what truly is important. Sometimes others just can't be around us. Part of the process.

Too many infants are still loosing the battle to congenital diaphragmatic hernia and it is frustrating because ten years ago, the stats were the same these children over all have a 50% chance. I hate it when parents have to walk down the same path as we did ten years ago. I cry – I wish I could go to the ends of the earth and just give them a hug. I know all too well what it is like to receive a hug from someone who also had their young child die. No words are needed – it is a silent knowledge and comfort. Though both wish neither had the experience – we are thankful we are not alone.

The first few years – parents and families grieve hard – some do it for months – hard, some do it for a period at first and it gradually ebbs. The first few years – people should be kind and not make any judgements. Until you have walked that path, you don’t know and all grieve and react differently – respect that. Only if someone is continuing to deeply grieve – that is depression and you need help for that.

Over the last few years – I also have discovered a technique which wasn’t available to Cecilia – and it explains why she ended up on ECMO. When she was born – vent immediately at the highest setting. (They don’t do that now – there is a gentle vent technique – which became widespread a few years after her death.) I now know what put her on ECMO and caused the lung bleed. We don’t have do-overs. We can wish, would have, could have, want to but in the end – we don’t have that – we have to accept what is – is. That takes time. I’ve far passed that time.

So – grief is individual but if it goes on too long – see someone you trust to help – it isn’t weak to ask for help, it actually is a sign of strength. For those trying to help us through our grief – be kind – be open minded and just be there – but also know sometimes we want to be alone too. It is hard because this is something no one can fix and nothing will ever make it right. An injustice of life we have to live with and learn to live without. We want more than anything to be sure that our child’s case helps others survive. We want no one to go through what we have – and it isn’t because we feel we deserve it or that others do not or we want to be the one and only. The pain we feel and felt – like no other pain – and you wish that pain on no one – ever.

Life is supposed to make you better, not bitter - and our experiences in life too - if they are learning to live without and move through this life to make a difference.

Quotes About Hope..

Hope is the only bee that makes honey without flowers. ~Robert Ingersoll

Hope is faith holding out its hand in the dark. ~George Iles

Hope is putting faith to work when doubting would be easier. ~Author Unknown

Hope is the physician of each misery. ~Irish Proverb

Hope is grief's best music. ~Author Unknown

WORDS OF WISDOM ABOUT LIFE

1. No one can ruin your day without YOUR permission.
2. Most people will be about as happy, as they decide to be.
3. Others can stop you temporarily, but only you can do it permanently.
4. Whatever you are willing to put up with, is exactly what you will have.
5. Success stops when you do.
6. When your ship comes in make sure you are willing to unload it.
7. You will never "have it all together".
8. Life is a journey, not a destination. Enjoy the trip!
9. The biggest lie on the planet: "When I get what I want I will be happy".
10. The best way to escape your problem is to solve it.
11. I've learned that ultimately , 'takers' lose and 'givers' win.
12. Life's precious moments don't have value, unless they are shared.
13. If you don't start, it's certain you won't arrive.
14. We often fear the thing we want the most.
15. He or she who laughs......lasts.
16. Yesterday was the deadline for all complaints.
17. Look for opportunities, not guarantees.
18. Life is what's coming, not what was.
19. Success is getting up one more time.
20. Now is the most interesting time of all.
21. When things go wrong, don't go with them.

Hope...

Is why the stars light their candles every night. Even when the darkness is too deep for you to see them, you know they're out there...shining and beaming across millions of miles like the message you must need to hear...

Don't give up on hope and it won't give up on you.

Quote...

“The men the American people admire most extravagantly are the most daring liars; the men they detest most violently are those who try to tell them the truth.” - Henry Louis Mencken

Nature - an Angel's Favorite HIding Place

Ever felt an angel's breath in the gentle breeze? A teardrop in the falling rain? Hear a whisper amongst the rustle of leaves? Or been kissed by a lone snowflake? Nature is an angel's favorite hiding place. ~Carrie Latet

LOVE

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It is not rude, it is not self-seeking.
It is not easily angered, it keeps no record of wrongs.
Love does not delight in evil, but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
Love never fails.

~I Corinthians 13:4-8

You were meant to be...

God doesn't give you the people you want, He gives you the people you NEED.
To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be.

World Wide Children's Memorial Day...

Light a candle at 7 PM your time and extinguish it at 8 PM so all the angels can see a light around the world. This day was started by Compassionate Friends an organization for parents who have had a child die, no matter what circumstances or what age. Either way it is a loss we learn to live with and hopefully turn around into something more positive.

http://www.compassionatefriends.org/

The Remembrance Book:

http://www.compassionatefriends.org/Other_Pages/THE_COMPASSIONATE_FRIENDS_REMEMBRANCE_BOOK.aspx

Bible Verses...

'I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives. So don't betroubled or afraid. Remember what I told you: I am going away, but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am. I have told you these things before they happen so that when they do, you will believe in me..'