Showing posts with label march of dimes. Show all posts
Showing posts with label march of dimes. Show all posts

Wednesday, September 1, 2010

Understanding Event

Yesterday was the event that has been in the works for two months!  I think it went really well.  We had about 40 people total there and they were from various professions.  We had nurses, social workers, hospice employees, health department HANDS family service workers, counselors, a hospital chaplin, representatives from two local crisis pregnancy centers and, of course, a few people that love me.  We also had three other mothers who have experienced losses themselves to be a part of the parent panel.

Here are a few photos from the day.  I should have more soon.


This was the registration table (after most had registered).  It had sign in sheets for their CEU's, folders with info in them, Shyla's footprints, March of Dimes Brochures and an example of a care package.


This was during the presentation by the my state coordinator for the March of Dimes.


This is one of the posed photos we took at the end.  In this photo are the hospital's Health Ministries Coordinator, a HANDS nurse, me, a hospital chaplin and the director of the local crisis pregnancy center.


Ben and I at the end of the event with Shyla's footprints.

All in all I think the participants learned a lot and above that, their hearts were touched.  I saw so many tears as the other moms and myself shared our stories and our babies. 

Thursday, August 12, 2010

Understanding

On August 31 I will have the amazing opportunity to speak with local nurses, doctors, hospital personel, pastors, counselors, and social workers about pregnancy and infant loss.

I have been working on this project for a while and it is really happenning!  We will start the morning with a wonderful doctor talking about different kinds of pregnancy loss and then a representative from the state March of Dimes office will address early infant loss and exsisting resources.  Lastly, a panel of parents who have experienced loss will be answering some predetermined questions.  It is our plan for them to specifically share what was least/most helpful after their loss, specific instances they remember that were hurtful, and things we wish others new about pregnancy and infant loss.

It is my hope that we can educate the "first responders" to those experiencing loss and hopefully make a difference in someone's life who may walk down the road we are now on.

So... I need your help.  If there are any Mama's out there who want to be a part of this event, but you are out of state, there is a way you can help.  I need your stories.  If you want to be a part of this project, please leave the following information in a comment or email me at scattercreativejoy at gmail dot com.

*First name, City/State/Province
*Baby's name (if named)
*Gestation/age at the time of loss
*Cause of loss if known
*One thing that was most helpful in the first days after your loss.
*One thing someone said or did that was particularly hurtful.
*Anything else you would like these health care providers to know.

Thank you all so much!!!

Also, please spread the word!  If you can, link this post on your blog and send your readers this way.  I would really like to have several stories to include in something I can give the participants.  Right now, I have 23 professionals registered and this is just by inviting through email.  The information should be hitting the newspapers and radio soon.  We have applied to give nursing and social work CEU's and if we can offer these, I know we will have several more register!

Thank you all so much for sharing your stories and helping educate the community!

Tuesday, May 18, 2010

Support

The March of Dimes Mission/Support group met for our first official support group meeting lastnight.  We all introduced ourselves and shared a little about our babies.  We had everyone there from a teenager who has experienced a missed miscarriage, to a stillbirth at 28 weeks due to a clotting disorder (me), to a lady whose son was born premature and had to fight and still is fighting (four years later) to live a healthy life and she also had a baby girl in December at 37 weeks, stillborn due to placental abruption. Then there was the mom who delivered her twins at 24 weeks...one is now an active almost three year old and the other passed after two days in NICU and then there was the couple who joined us later and tearfully told us about the miscarraige she experienced less than a week ago at 8 1/2 weeks.  We all had our own varied experienced with pregnancy and loss, but there we sat, in that small meeting room opposite the hospital cafeteria, bonding through our grief.

I shared what I believe the three main purposes of this group are. 

1) To support each other.
2) To support other grieving parents through care packages and resources.
3) To educate the community in the matters of prematurity and pregnancy & infant loss.

So after our introductions we started to talk about the care packages.  We are currently assembling care packages for our local hospital to give to women who experience stillbirth, but I really didn't know what was available for women experiencing miscarriage.  Come to find out...nothing.  The lady who had the most recent miscarraige said they gave her a stack of papers about pain management after the D & C and medical stuff and she just happened to find the brochure about the MoD Support group among those papers.  So we started a list of what we might include in these packages. 

This is where I need some help.  I know many women that have felt the pain of miscarraige and I would like your input on what to include in these packages.  If something was given to you during your time at the hospital or the doctors office that was particular helpful, what was it?  Or what do you WISH you would have been given at that time?  Thank you all for your input!  If you have thoughts to contribute, leave a comment below or friend me on facebook and we can talk.

I will be making a request later in regards to our "education" goal and I know lots of you have great ideas in this area as well!

Friday, April 30, 2010

March for Babies 2010

Last Saturday was the March for Babies.  And it rained.  Boy, did it rain.  And storm.  And tornado sirens too!

But dispite the rain, we had at least 200 people.  Maybe 300.  Not bad at all if you ask me.  Team Shyla Joy had a total of 19 walkers and we raised over $1000!  (Pretty awesome considering our first goal was $280!)

So we marched.  We took the event indoors to a gym and we marched in circles. 

As the ambassador family, we were given the opportunity to tell our story again and to talk about the support group.  After we spoke, we lined up to begin the march. 

Then, the emcee asked for a moment of silence to remember Shyla.  For that minute, everyone in that room bowed their head and silence and thought of her.  Thought of her life.  How blessed I am to know that others were, even if for only that moment, thinking of my child.  It was a beautiful moment I will never forget.

Here are some photos of her day.

Shyla's Memory Board.


Ethan, her board and her footprints.


The memory boards on the wall in the first turn.


The back of our shirts held Shyla's footprints!  I love that they could do that!  Actual size and shape...we had a little trouble with the ridge lines, but it's her footprints!



After speaking.


Family.


College Friends.


Family Friends.



Co-worker Friend.  (She brought her husband, three kids and nephew too!)


Ethan on Daddy's shoulders.


On Mommy's shoulders.


Walking!


Walking!


And more Walking!  We did 10 laps in the gym and everyone there was so great.

All in all, it was a good day.

Monday, April 19, 2010

From Tragedy, a Mission of Hope

From Tragedy, a Mission of Hope


Woman whose child was stillborn now with MOD, helping others cope with loss

By HEATHER PYLES, CJ Staff Writer

Commonwealth Journal

Mattie Wells began suspecting something was wrong with her unborn daughter when she stopped kicking and moving in her womb in late August 2009.

A visit was scheduled with Mattie’s doctor, and on August 31, Mattie and her husband Ben discovered what Mattie had begun to fear when Shyla Joy Wells had suddenly stilled.

“As soon as they turned on the ultrasound, I could see there wasn’t a heartbeat,” Mattie said. “That she had already passed.”

Shyla was nearly 28 weeks along when she died. Shyla’s older brother, Ethan, who is nearly three years old now, had to be told that his little sister had gone to be with Jesus. He wouldn’t be able to watch his sister grow and become a part of their family.

Doctors began running tests on Mattie — who had experienced a normal pregnancy with Ethan — to determine what may have gone wrong.

“We didn’t know why it happened,” Mattie said.

Mattie was told she would have to carry Shyla for two days before going into surgery. The family, numb, went home to await the surgery in which doctors would deliver Mattie’s stillborn daughter. It was during those two days that Mattie began searching online for resources for mothers who have gone through the loss of a newborn child.

“There’s kind of a network for women who have experienced loss,” Mattie said.

It was all Mattie could do as she mourned the death of Shyla, who she still carried.

On September 2, 2009, doctors at Lake Cumberland Regional Hospital delivered Shyla via C-section, and Mattie and Ben took some time to hold their daughter and grieve her passing. The tiny baby measured 13 inches long and weighed in at one pound, 11 ounces.

“I don’t think it was really real until they ... wrapped her (Shyla) in a blanket and handed her to him (Ben),” Mattie said.

Shyla’s funeral would follow only four days later, and there, Mattie and her family released 28 pink balloons — one balloon for each week Mattie carried Shyla. Instead of flowers, the family asked that baby items like blankets, clothes and toys be donated to the local pregnancy help center in Monticello.

“He (Ethan) said ‘Bye bye, Shyla. I see you later,’” Mattie said about her son, noting that he knew he’d lost a little sister. “He understands more than I thought.”

Items poured in for the help center, and Mattie began thinking about reaching out to other mothers who had experienced a loss like hers.

“Unless you’ve been there, you can’t imagine the devastation,” Mattie said.

Four weeks later, the family discovered what had happened. A blood test showed that Mattie tested positive for Factor V Leiden, a hereditary blood coagulation disorder that increases a person’s risk of developing a blood clot.

The disorder hadn’t presented during Mattie’s pregnancy with Ethan, but it had led to the death of Shyla.

One blood test would’ve pinpointed the disorder, and Mattie said an anticoagulant regimen would’ve prevented Shyla’s death.

“A simple blood test could prevent death,” Mattie said.

The blood test specifically developed to pinpoint Factor V Leiden is not required for pregnant women, but Mattie is working with the March of Dimes, a non-profit organization dedicated to funding research into pre-natal and post-natal health for babies and their mothers alike, to help advocate making the test a requirement.

But Mattie’s work with grieving mothers is also immensely important. Mattie said she was shocked to discover there wasn’t a support group for mothers dealing with the loss of their newborns in the area. She said much of her healing came about with the help of other mothers she connected with on the internet who had lost their own children. But there was no local network to help her through her loss.

So she’s set about to changing that, with the help of the March of Dimes. Mattie serves as a head of a support group through the March of Dimes meant to provide a network of resources and support for grieving mothers and mothers who have delivered premature children.

One mission of the March of Dimes is to reach out to bereaved families after the loss of a child, and to provide support for mothers and their families who currently have premature babies in prenatal intensive care in hospitals.

While traumas such as a loss of a child have been discussed more openly now than in the past, Mattie said more dialogue is necessary for grieving families to truly heal and move on. One of the most common sentiments Mattie said grieving mothers with other children run into is the idea that they still have their other children — and that they should move on quickly for them.

“That doesn’t take away the grief of losing my daughter,” Mattie said.

And Mattie takes comfort in the few items that remind them of Shyla — the few pictures taken of her and her family before she was whisked away, the blanket she was wrapped in, and pink Gerbera daisies, which were used in her funeral.

“This is all I have of her,” Mattie said about those precious items, as she touched a locket she often wears that features a print of Shyla’s tiny foot prints.

The Wells family was asked recently to serve as the Ambassador Family for the 2010 March of Dimes March for Babies, and Mattie said she jumped at the chance because she saw it as another tool to let families know that a support system does exist.

And there are families out there who need that support system. Mattie said that just last week, she was told about two families in the region who are struggling with the loss of a baby. Mattie, a social worker at Monticello Independent School, has made herself available to those families, and she has started putting together care packages for families who have been suddenly faced with the loss of their child.

“It’s just a very different kind of loss,” Mattie said. “There’s nothing you can compare it to.”

With Mattie’s involvement, this year the March for Babies, scheduled for April 24 in downtown Somerset, will feature boards decorated with the keepsakes, pictures and names of babies who have passed on. Those parents who have lost babies interested in participating in that project can stop by the March of Dimes Somerset office, located at 44 Office Park Drive or call 606-679-6514.

The boards will be set up at the start and finish of the walk, at Rocky Hollow Park.

“We’re celebrating the premature babies who have survived, but we’re also remembering the ones who didn’t,” Mattie said.

And Mattie is also spearheading a “Pages for Preemies” fundraiser for mothers and families who have lost newborns. The event is scheduled for Saturday, April 10. Participants can bring pictures of their children and supplies for scrapbooking to create memorial keepsakes of their lost loved ones. It’s $15 to participate and all proceeds go to the March of Dimes.

Mattie will always remember the daughter that she only knew in the womb, and while she and her husband haven’t yet begun to try again to expand their family, she said they will soon.

But she’ll always grieve the loss of her child, and she said she’ll continue reaching out to those who have gone through the same thing her family did — because there’s nothing more comforting in your darkest hours than knowing someone who has gone through the same thing.

“Just hearing these stories is encouraging for women who have been there,” Mattie said.

Sunday, April 18, 2010

Newspaper and Radio

On Good Friday, I had an interview with a reporter from the Comm.onwealth Jour.nal, the daily newspaper in a neighboring county.  The interview went well I think.  When the paper came out, the "story" made the front page complete with a photo of me holding Shyla's footprints and little crocheted dress in a shadowbox and a photo of Ben holding her that out NILMDTS photographer friend took.

The local newspaper saw the article and requested permission to reprint.  On Tuesday, it ran front page of the Outl.ook.

The article can be read here and I will post the article in a separate post for when that link expires.

Then, one week later, I did a Community Connections radio segment that aired on three local FM stations and two AM stations one week ago today.  Last Sunday, before church, Ben and I sat on the couch and listened to this hour long radio program.  Sometimes it was hard to believe that was be on the other end of the radio.  "Is this really my life?"  It seemed so surreal. I really wish I would have recorded the program.

I have been given all of these opportunities becuase of the wonderful people at the March of Dimes who took a chance and asked my family to be the ambassador family this year.  They asked me to share our story of loss and give a voice to the bereaved.  I am honored.  I pray that every word I spoke pointed people to the Healer and Comforter and brought some peace to their hearts.

Monday, April 12, 2010

A New Diagnosis

On Good Friday I had a busy day planned.  It was seven months to the day that Shyla had been delivered.  She had been gone as long as I carried her.  But I was in a surprisingly good mood.  I had an meeting scheduled with a reporter to write our story for a feature in the Common.weath Jour.nal and then I had a follow up appointment with my regular OB.

The interview with the reporter went well.  I was able to share our story and what we are doing with th
March of Dimes.  I shared some photos with her and had a good feeling about the article. 

The appointment I had with the OB was to just check up on me and see how I am healing.  We discussed the Perinatal specialist that I had seen in October and that I really wished not to see him again.  He had several comments that were almost accusatory and very harsh words for me because I had chosen not to have an autopsy performed after Shyla's birth.   I now have an appoinment with a different specialist next month! Can I just say I {heart} my OB.

While the Dr. was talking about some things he mentioned something I had never heard before about my medical diagnosis.  MTHFR.  As a friend of mine said,"It almost looks obscene!"  So apparently, I am positive for it in addition to FVL.  I'm heterozygous for the gene and my Dr. showed me my chart where it said in nice fine print, "One copy of the gene does not increase the likelihood..."  So now we are just waiting to see the Specialist in May and going from there.

I was actually rather disheartened after I left.  After getting the new diagnosis, I asked him if he thought, medically, it was ok for us to start trying to get pregnant again.  The short answer, was "no".  My body needs more time to heal.  I was ok at the time, but on the 45 minute drive home, I cried and prayed and cried some more.  I feel like both my husband and I are as close to emotionally ready as we will ever be and just really looking forward to being pregnant again.

So moral of the story, God's timing is always best and we will know when we know about how to best take the next steps.

Monday, March 1, 2010

Positivity from Pain

Kristi and Katy at Butterfly Mommies have posed this question...

"What positive things have come from the loss of your baby?"

For me, I knew from the beginning that God would make beauty from these ashes.  He had to.  It was the only way for me to make sense of Shyla's death.  Before I left the hospital, I had already heard stories of how Shyla's life and God's faithfulness to me had touched people.  His grace was overwhelming.  Woman after woman came to visit me in the hospital and shared their stories of loss.  Eight months before mine, eighteen years before mine, thirty years before...

These women told their stories like I tell mine.  With love and conviction.  But one thing surpised me.  How many of these women I had known for many years and I had never known of their loss(es). 

I knew I had to give this kind of grief a voice.  My first opportunity was to speak at a banquet for our local Pregnancy HELP (Holding Each Life Precious) Center in November.  While planning Shyla's service, we had asked in leui of flowers, donations be made to the HELP Center.  Just three weeks after our loss, my family took these donations to the center.  It was beautiful to see all of these baby items all stacked up.  All in memory of her.  All for the use of other mommies and babies.  Sweet.  Bittersweet.  But Beautiful!


I had the opportunity to share her story and to raise awareness for Pregnancy and Infant Loss infront of the 250+ people in attendance.  I spoke of God's grace and how he comforted us in the days and weeks since our loss.  I spoke of how every life is precious and not to take one day with your children for granted.

Immediately following the banquet I had women to begin sharing of their loss.  God moved my heart by thier willingness to share.

I felt led to make care packages for mommies who may walk through a similar loss and the first "batch" was delivered to the hospital on the day I was scheduled to deliver Shyla.

At Christmas time, we sent a letter to our family and friends and asked them to do a random act of kindness in memory of Shyla.  We had such a wonderful response.  Reading all of the kindness done in honor of our daughter was a beautiful way to begin our Christmas morning!  (You can read these acts by clicking on "Shyla's Stocking" in the left sidebar under the "labels" tab).

Recently, I have been asked to work with a group of ladies in coordination with the March of Dimes to help bereaved parents and support parents with babies spending time in NICU.  They are such a wonderful group of ladies.  They have decided it would be nice if the group could help with the care packages.  Several things have already been donated for the packages and lists are circulating the area to get more donations.  I was overwhelmed.

I also have been blessed to be asked if we would be the March of Dimes Ambassador Family for a tri-county area this year.  I had the opportunity to share Shyla's story at the March of Dimes Kick-off and I have been asked to share again this coming week at the Regional Hospital to kick-off the internal fundraising for their March for Babies Team.

It is wonderful to be asked to share her story and raise awareness.

Maybe someday, no parent will have to go through what so many of us have.

God has become more than just a friend to me through all of this.  That is probably the most beautiful thing yet.  From my pain He has never left me.  When I feel angry or hurt or blessed, He is there.  While I may never have all the answers, I know the One who does.  And until I see my baby girl again and am in His presence, I will keep speaking the sweet name of my child and the of the awesome love and grace of my Lord.


Saturday, February 13, 2010

Kick Off!

The March of Dimes Kick Off was Thursday and I had the chance to share Shyla's story.  Three pages of notes...ignored.  I got up there infront of all the team captains and everything just came out.  I guess I have replayed everything in my mind so much the story kind of flows out now.  I didn't even break down.  A few small tears.  I'm sure those in the crowd shed more than a few by watching their faces.

I must have done well though.

I have been invited to speak at the Regional Hospital.  To share her story again. 

How blessed I am to speak her name and blessed to be her mommy.
I'm really excited to be a part of this organization.  If you aren't familiar with the March of Dimes or the March for Babies, check it out here.  To start a team for the March for Babies, go here.

Also, check out my sidebar to help raise money for the March of Dimes. 

Wednesday, January 20, 2010

Ambassador

I started looking for a local support group back in October.  No luck.  We live in a pretty rural area and there was nothing here.  The only thing we have access to is private counseling, but I was really looking for a group we could be a part of and contribute to.  I researched the Compassionate Friends, Share, MEND, MISS, all of them.  Then, on a random websearch I came across the March of Dimes website.  I had no idea what all the March of Dimes did.  I had participated in the March for Babies before (when I was pregnant with Ethan was the first time), but I had NO idea the money raised also supported research in all kinds of health issues...including clotting disorders and other issues related to miscarriage, stillbirth and neonatal death.

I looked around their website some more and found that part of their mission is to provide support to bereaved parents.  Who knew!?  They even sponser "A Walk to Remember" (the steps they'll never take).  We might not have a lot here, but I do know the March of Dimes Regional Office in a neighboring county.  I sent them an email saying I was interested in learning more about any support groups or services.  Then I waited.  And waited.

In early December, I got an email!  The local office does not currently offer services for bereaved parents, but wanted to start a committee to lead up support efforts and they asked if I would be willinng to be a part.  Of course I said yes!  I was so excited!  We met once in December to brainstorm what we could do to support bereaved parent and parents of babies currently in the NICU.  The closest NICU is a little over 2 hours away, so we were trying to think of things to take there to support families du ring their stay.  I never experienced that.  BUT, I am going to be able to share what I know.  Which, sadly, is only death. Among the people that were in attendance, there were two March of Dimes employees, a mother with a lively little girl who was born very premature and is now 4 years old and healthy, there was a mom to twins that were born premature about a year ago and both are now doing great, a mommy to a set of twins who were born at 24 weeks, one survived, one did not, and then there was me...no survivor here.  At times I wondered if this was the right place for me, but the more we talked, the more I knew it was.  LOTS of great ideas came from this session, but we left not knowing exactly where to start.

We met today for the second time.  There were just three of us there, but I still feel like we got a lot accomplished.  We are trying to get info out there and start some support services.  The March of Dimes employees are busy planning the marches and getting everything ready.  If you are familiar at all with the March for Babies, you know that every year the March of Dimes selects an Ambassador to share their story and lead the official March.  The Marches that I have attended, there is always a healthy baby or preschooler who has overcome many odds and is a survivor of premature birth. 

This year, they are taking a different approach.

They asked me today if we would consider being the Ambassador, in memory of our Shyla.  At first, I have to admit, I thought "I bet she doesn't remember my baby died.  There is no success story here.  There will not be a healthy bouncing baby girl at the march."  But as we talked more, it was very clear she remembered my story.  I will speak at the kick-off luncheon in a few weeks and share her story.  They told me I will need to speak with the press also and gave me a tip sheet on how to do that.  Then, in April, at the March for Babies, Ben, Ethan and myself (with Shyla's blankie in hand) will ride in a convertable and lead the march through the downtown area of that neighboring town where the regional office is located.  This will not only be a March for Babies, but a Walk to Remember our girl.

I am honored. 

She is honored. 

Pray that God is honored in all of my words and actions.