Thank you!

April 28, 2012 at 8:06 pm | Posted in Grief, Love, silver lining, why I write | 4 Comments
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2 words today:

THANK YOU!!

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Sweet Sawyer

November 17, 2011 at 7:48 am | Posted in Anniversaries, Grief, silver lining, Time | 24 Comments
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Sawyer

Dear Sawyer,
No matter what I do the days keep going by me. Today you would have been 2! It is so hard for me to believe that you would no longer be a baby. I close my eyes and try so hard to imagine you as a toddler. I only see your big baby eyes staring at me. I wish I could see you grow up. I cannot even put into words how much I want to hold you, hug you and sing happy birthday to you.

We will sing. Your birthday and you will not be forgotten. Not today, not ever. Your daddy and I will go to the cemetery. Your big sister and (one of) your big brother(s) will sing to you too. Maybe we will buy some balloons or a cupcake.

I will try to keep myself really busy. I know you already know this but ever since you died (maybe even since Jake died) I have to be very busy. It is like I am afraid that if I have too much time to think about it my brain will finally realize that you are gone. And you are not coming back.

I have so many things that I want to ask you:

Where are you?
Are you ok?
Do you know how much you are loved and missed?
Will I ever get a chance to hold you again?

There will be no answers. I will not see you grow up. I will be forever thankful that you chose us to be your parents. I cherish the nearly 6 weeks we were lucky to spend with you. I will always look for ways to carry on your purpose in this life. I will celebrate your bittersweet 2nd birthday. And as always, I will look for you in my dreams.

Sweet Sawyer, I love you and miss you. Happy Birthday baby boy!

October

October 2, 2011 at 11:58 pm | Posted in Grief | 10 Comments
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Along with being Breast Cancer Awareness month, October is also Pregnancy and Infant Loss Month.  Did you know that 2,000 women/men lose their babies in 1 day (and that is in the United States alone)?

Myths vs. the truth about pregnancy/infant loss:

Myth: Losing a baby is very uncommon; it won’t happen to me or someone I know.

Truth:

  • 25-50% of all pregnancies end in miscarriage (pregnancy.org).
  • Stillbirths (the death of a baby after 20 weeks gestation) occur in one in every 160 pregnancies–about 60 stillborn babies every single day (March of Dimes).
  • Each year, in the US alone, about 20,000 babies die in their first month of life, many after being born prematurely (March of Dimes).
  • SIDS is the leading cause of death among infants ages 1 month to 1 year.

 

Myth: Pregnancy/infant loss is something that happens to older moms, overweight moms, or moms with health issues.

Truth: “Baby loss” does not discriminate. Often, it’s young, perfectly healthy women who experience the loss of a baby. The Faces of Loss are of ALL kinds of women–young, old, black, white, thin, obese–pregnancy/infant loss can strike anyone.

 

Myth: Miscarriages and Stillbirths are usually caused by a lack of prenatal care or something else the mother did during her pregnancy.

Truth:

  • Almost 100% of miscarriages could not have been prevented, with the majority being caused by chromosomal abnormalities.
  • 25% of Stillbirths are caused by placental problems; 15% are caused by an infection; 2-4% are caused by umbilical cord problems, and 50% have no known cause of death whatsoever. While there are risk factors to be aware of (smoking, for instance), the overwhelming majority of stillbirths are completely out of the mother’s control.

 

Myth: A woman who has just lost a baby wants to forget it ever happened and move on with her life.

Truth: While this may be true for some, many are dying to talk about the child they lost, especially if it was a late-term pregnancy loss or infant loss. The chance to talk freely about their baby(ies), without feeling like they are making everyone uncomfortable, is something many, many women who have lost a baby wish for.

The information above is from I am the FaceFaces of Loss, Faces of Hope tries to put real stories and faces with all of these statistics.

Hats & Hope?

September 20, 2011 at 11:38 pm | Posted in Grief | 11 Comments
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I had been hoping for an answer to why Sawyer died.  And while I was hoping, I wanted an answer to why Jake died.  There is no answer today.  There might not be an answer tomorrow.  Or ever.  I was hoping that I could fight against whatever caused the deaths of our babies.  I could raise awareness.  Help other families.  Now I do not know what I am fighting against.

Perhaps in the case of Jake it is prematurity and hydrops that I need to fight.  Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means.  It seems hard to fight against the unknnown.

I have readjusted what I hope for in the past.  It is once again time for me to change my hopes.  I have to stop hoping for an answer.

I will continue to be so thankful for everything I do have.

I will continue to be inspired by parents who have turned their grief into action:

The Ronan Thompson Foundation
Layla Grace Foundation 
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

I hope to have the strength one day to also turn my grief into action.  Writing and speaking about Jake and Sawyer is a step in the right direction.  I just have to figure out what is next.  Any suggestions?

Unknown & Unchanged

September 8, 2011 at 9:24 pm | Posted in Grief, mourning | 17 Comments
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Nothing has changed.  If you had spoken to me (or I had written) yesterday everything would basically be the same.  Jake and Sawyer died.  The twins are healthy.  However, today we received an email from Sawyer’s pathologist.  We have waited for over a year for the results of the Mayo clinic study which Sawyer is a part of.  The study tests for cardiac channelopathies, such as long QT.

Sawyer’s doctor wrote, “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”

I always knew the study might be inconclusive.  However, I hoped that there would be some sort of medical answer.  An answer that could somehow help me rationalize and comprehend Sawyer’s death.  If there was some known medical condition we could have the twins tested for it.  As of now there is no answer.  Maybe there never will be.  No one ever promised that life would make sense.

The cause of Sawyer’s death is unknown.  The facts are the same as they were yesterday.  Nothing has changed or has it?

SUIDS, SIDS & Sawyer

May 20, 2011 at 8:59 am | Posted in CHD, Grief | 8 Comments
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Before January of 2010 I was blissfully unaware that the term SUIDS (Sudden Unexplained Infant Death Syndrome) even existed.  I had heard of SIDS but my experience with it was limited to watching stories about fictional families in Lifetime movies or reading about real, unknown families in newspaper articles. 

Until December of 2006,  SIDS did not exist in my real world.  Our next door neighbor called to let us know that another neighbor’s baby had died.  It was determined the cause of death was SIDS.  Evan and I went to talk to the parents.  Their 2 toddler boys were running around in circles as we shared Jake’s story and they told us about their baby. 

Our neighbor’s baby was full term.  She was 3 months old.  She had been to the pediatrician the day before.   She had been taking a nap.  She did not wake up.  I did not know that Jake would die.  However, I knew he was very premature and he had hydrops.  I knew that he was in the NICU and there were complications.  Our neighbor thought she was waking up her baby to take her to her first Christmas party.

December of  2009, Sawyer did not wake up. 

It was determined that Sawyer’s cause of death was not SIDS because of the coarctation of his aorta.  In order for SIDS to be determined the cause of death the baby must be 100% anatomically correct.  The coarctation while it was not narrow enough to cause death, it did lead to the possibility that he had cardiac channelopathies. 

I know that I am not the best at explaining these medical terms.  The following is a better explanation from the CDC:

Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose and cause of death are not immediately obvious prior to investigation.

SUID posible causes: Poisining or overdose, SIDS, Accidental suffication, Unknown, Infections, Inborn errors of metabolism, Cardiac channelopathies.Each year in the United States, more than 4,500 infants die suddenly of no immediately, obvious cause. Half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.

Sudden Infant Death Syndrome (SIDS)

Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.

SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States

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