Our Baby Pher Molly Bear

Molly Bears is an amazing organization that provides weighted teddy bears to grieving mothers (at no cost).  I ordered one for Baby Pher soon after we lost him and I received him a few weeks ago!  He is so precious and snuggly.  It is so nice to have something tangible to represent our sweet baby. I have also ordered one for Rex and am looking forward to getting him one day.

Please take a moment to read The Molly Bear Story. It is a wonderful story of turning grief into a way to help others.  They are truly inspirational and I hope that one day I can do something like this. 

 Sweet Baby Pher Bear

A daily reminder

Something wonderful that came out of the heartbreak I endured this year was the creation of new friendships.  The connections I have made with other women who have also lost a baby is utterly amazing. Their stories, words of wisdom, support, and encouragement helped me through my darkest of days.  Their friendship is very special and will endure a lifetime.

One of these wonderful women gave me the most meaningful and special gift, and I wanted to share it with everyone.  She lost her first son to a kidney problem and really understood everything I was going through.  Her support and prayers have meant so much to me.  Well, we got the chance to meet a few weeks ago.  During our chat, she gave me a silver eternity ring with the following Bible verse engraved:

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11

I wear it every day and if I am feeling sad or defeated, I can simply look down and read the message.  It is so comforting.  The smallest things really can make the biggest difference.

I feel so incredibly lucky to have so many amazing friends and family supporting me.  Thank you to each and every one of you!

Remembering the boys during the holidays

I wanted to share the special ornaments that we'll be putting on our Christmas tree this year.

The first two I had personalized by a local business.

The silver ornament was given to us by All Children's Hospital's Pastoral Care Department.  Last weekend they had their annual memorial for the children who passed this year.  Unfortunately, we could not attend because we were out of town, but Rex's picture was included in the presentation.  Thanks to generous donors, each attendee was given an engraved ornament as a keepsake.  Little things like this really mean so much!

The ugly truth

Many people have said that they have been impressed by my positive attitude and optimism.  While I appreciate the compliment, I feel I owe it to my readers to tell the truth.  Especially since one of the main reasons I started this blog in the first place was to share my experience, and hopefully help someone else in a similar situation.  I would not want someone going through a hard time to read my blog and think “I just can’t be that positive,” and then feel badly about their own attitude.  While, I do try my best to focus on the positive side of things, this is not my mood most of the time.

Losing a baby is hard.  You lose so much more than just your child.  When we lost our two sons we lost celebrating birthdays, decorating the Christmas tree, the first day of school, baseball games, prom pictures, weddings, grandchildren…the list goes on and on.  Every day is a reminder of what will never be.  We will never get to experience life with them, and that’s hard.

Dealing with the aftermath of a loss is hard. Life goes on, of course, and I get caught up in my daily routine, but then something happens and it brings it all back.  I thought I would list a few of the little things that do this. 

The other night, I was lying in bed (apparently digesting dinner) and I had a twinge in my stomach that felt just like Rex kicking.  This happens from time to time and it makes me miss him so much.  I remember when his due date was approaching, I was so worried.  I knew he was safe inside me…bouncing around…giving me heartburn.  I wanted to keep him in there forever.

Dates are now just reminders of what has been lost.  November 30^th is when I found out I was pregnant with Rex.  I was overwhelmed with joy.  We had been told that Pher’s kidney issue was a fluke, so we were so hopeful for our healthy baby.  Thinking about how much has changed since that day makes me sad.  December 19^th – Pher’s due date.  We should be gearing up for our son’s birthday.  Instead, we have lost another baby. 

Seeing infants is really hard.  I wish it wasn’t, because I love babies, but I can’t help but think of my own.  I avoid friends with babies and I have half of my Facebook friends blocked because seeing pictures of their babies is too hard.  Sometimes I get online and force myself to look at the pictures (desensitization therapy!)  I try to remind myself that one day I’ll have a cute, chubby, happy baby too.  It is really hard to believe it though.

Getting asked the question – “do you have kids?”  Apparently this is a common question for a young couple (I guess I didn’t really notice it before).  This one really stings.  A few weeks back Jon and I were at a baby’s 1^st birthday party.  There were kids, babies and pregnant women everywhere!  I was so proud of myself for even being there.  Then we started talking to this sweet woman who had her three month old baby (the same age Rex would have been).  She started making silly faces at her infant. Then noticing we didn’t have any kids around us she said “You don’t have kids, do you? You must think I’m crazy-acting!”   What do I say?  This was a stranger…I’m not going to depress her with my sob story at a birthday party!  But at the same time I feel extremely guilty when I don’t acknowledge my boys.  I felt this same guilt often when I was pregnant with Rex.  I would get asked by strangers all the time “is this your first baby?”  Again, what do you say? 

No one said grieving would be easy.

Balloon Release

October 15th is a day dedicated to all of the babies who are so deeply loved and desperately missed.  On Saturday evening, we took a moment to remember them and the families they left behind. I hosted a balloon release at Crescent Lake Park.  It was a lovely event with amazing families. 

It was quite overcast, but all of the balloons floated toward a small spot of sunlight in the sky.  Once the balloons were no longer visible, the spot of sunlight disappeared.  It was really beautiful!  I know that all of the babies are enjoying their notes!

Walking to the release spot

Getting ready to release

Release!

There they go

 

PKD Walk in Pictures

Proud parents of Sticky Bean

Great friends!

Team Sticky Bean learning about the Survivor Games

Team Sticky Bean!

Jackie, Brett, and Tara playing the first game

Kelvin playing the second game

Game Three - unravel the frozen tshirt

Ft. Desoto - the view from the Walk

A PKD Walk supporter

Walking for PKD!

See you next year!

PKD Walk

The PKD walk was a huge success!  I will post pictures soon.  I just wanted to say thank you so much to all of our friends who came out to walk and all of our family and friends who donated to this cause.  We appreciate the support more than you know!

Sticky's Memorial

On August 21st, 2011 (one month after Rex's death), Jon and I had a private memorial on the beach.  It was a wonderful occasion and allowed us to formally say goodbye to our sweet little boy.  We lit candles, said prayers and recited a poem. We also read (or tried to read through our tears) letters to Rex from us and his grandparents. 

We invited our wonderful NILMDTS photographer, Angela Sacket of Loving Legacy Photography (http://www.lovinglegacyphotography.com/) to capture the ceremony on film.  Below is a link to a slide show of some of the shots from that evening. 

Sticky Bean's Memorial

Team Sticky Bean

On Friday night, my parents hosted a Charity Wine Tasting to help raise money for Team Sticky Bean.  They had a wonderful turn out and raised over $2800! We really appreciate all of our family and friends who came out to support the PKD foundation! 

Here are some pictures from the event (taken by Baby Rex's great aunt Mary Anne) 

Sticky's Grandpas!

Back of the "Team Sticky Bean" shirts

Generous gifts donated for the silent auction

Sticky inspired so many people!

A toast to the cure!

Last minute bids

Sticky's beautiful grandmothers!

In Memory

My Eckerd colleagues will be honoring Baby Rex by planting a tree on campus.  I feel so lucky to have such an amazing work community.  I look forward to being able to walk by Rex's tree every day!

Here is the plaque that will be underneath his tree.  A perfect tribute to our little fighter!

Flyer and Press Release

I'm trying hard to get the word out about our Tampa Bay Remembrance Gathering!

The Flyer

Gathering Planned for October 15, National Remembrance Day

The United States has designated October 15 as National Remembrance Day for families who have experienced the death of a baby during pregnancy or infancy.  In recognition of this day, the community is invited to gather together at Crescent Lake Park in St. Petersburg to participate in an environmentally friendly balloon release in celebration of the short but precious lives of the little ones we so deeply love and desperately miss.  The release will take place promptly at 6:00 PM on Saturday, October 15.  Guests are encouraged to arrive early to allow time to write notes to their children on seed paper, which will be handed out along with biodegradable balloons from 5:00-5:45 PM.  Precautions are being taken to ensure that this is an eco-friendly event, so we must insist that nobody brings their own balloons.  This event is free but donations are greatly appreciated.  To register please contact: lauren.e.highfill@gmail.com

This Remembrance Gathering is being held in affiliation with Sweet Pea Project and is hosted by Lauren Highfill Symmes, who is volunteering her efforts in memory of her own beautiful child, Rex Christopher.  Sweet Pea Project, a 501(c)3 nonprofit organization that offers comfort, support and gentle guidance to families who have experienced the death of a baby during pregnancy or infancy, was founded by Stephanie Paige Cole after the death of her daughter Madeline.  Sweet Pea Project is headquartered in Pennsylvania, but reaches out to families across the country and internationally through their blanket and book donation programs.  The official Sweet Pea Project Annual Remembrance Gathering will be happening on the same evening in Lancaster, PA.  For more information on Sweet Pea Project please visit www.sweetpeaproject.org.

Birthday Gift from Rex and Pher!

The boys sent me a double rainbow on my birthday!  Rainbows are cool by themselves, but extra special to me because babies born after a loss are called "Rainbow Babies!"  I took some cell phone pictures, but you can't really see the double rainbow, but it was there and it was beautiful!

"The soul would have no rainbow had the eyes no tears"

After the storm comes the rainbow!

Remembrance Gathering - Tampa Bay

On October 15th, 2011, I am organizing Tampa Bay's 1st ever Remembrance Gathering at Crescent Lake Park in St. Petersburg, Florida. This is partnered with the Sweet Pea Project.

Sweet Pea Project is a non-profit organization created in January 2009 by Stephanie Cole after the death of her daughter, as a way to honor her memory and reach out to other bereaved parents. Through their work, the Sweet Pea Project helps create a more supportive and compassionate community for other families affected by this profound and permanent loss.

October 15th is National Remembrance Day for families who have experienced the death of a baby. In observance of this day, and in honor of all the babies that are so deeply loved and missed, the Sweet Pea Project sponsors an eco-friendly balloon release in celebration of the short but precious lives of the babies we so desperately love and miss. (http://www.sweetpeaproject.org/remember)

If you would like more information, please email me at lauren.e.highfill@gmail.com. 

 

Some pictures from NILMDTS

Some more pictures

We are still waiting on our pictures from NILMDTS, but here are some that were taken with our camera. 

Rex's Original Due Date

Pher's estimated due date (December 19th, 2010) was a really hard day for me.  I spent a lot of time thinking about what could have been and reliving losing him.  Today, August 7th, 2011 - Rex's due date, is not especially more difficult than any other day.  I think I knew from the beginning of his pregnancy that August 7th wouldn't be our target date.  It never really stuck with me like December 19th did.  In fact, on a few occasions during our pregnancy Jon actually had to remind me when Sticky's due date was!  (I kept thinking it was August 11th).  However, it may not be especially more difficult because every day is hard...

I'm sorry that I haven't updated the blog in a while, but there is not much to say.  Our babies are still not here. and we still miss them so much. Unfortunately, I can't even report that my physical recovery has been easy or quick.  Last Monday, I noticed that my incision looked different.  Turned out that it was infected (apparently I hadn't been taking it easy enough).  The doctor had to re-open the incision and now I have a nurse come to our house every day to change the dressing.  This just postpones my recovery even further.  I want more than anything to at least feel like my old physical self again.  I'm finding that I'm very impatient!

However, I am very thankful for all of my wonderful friends and family who have helped me so much over the past few weeks.  I am especially grateful for my wonderful husband.  It helps to have someone to talk to who really understands what you are going through. We try to focus on what Pher and Rex are doing in heaven.  We think they are best friends and are currently sharing their stories to each other.  I do find comfort in knowing that they have each other. 

Thank you to all of your continued support and prayers.  They mean so much to us!

I want to end by sharing a poem with you all.  A friend of mine sent this to me today and it made me smile (and cry, of course!).

What Makes A Mother

I thought of you and closed my eyes
And prayed to God today
I asked, "What makes a Mother?"
And I know I heard him say
A Mother has a baby
This we know is true
But, God, can you be a mother
When your baby's not with you?
Yes, you can he replied
With confidence in his voice
I give many women babies
When they leave it is not their choice
Some I send for a lifetime
And others for the day
And some I send to feel your womb
But there's no need to stay.

I just don't understand this God
I want my baby here

He took a breath
and cleared his throat
And then I saw a tear
I wish I could show you
What your child is doing Here

If you could see your child smile
With other children and say
"We go to earth to learn our lessons
of love and life and fear,
but My mommy loved me so much
I got to come straight here!"
I feel so lucky to have a Mom who
had so much love for me
I learned my lessons very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day
When she goes to sleep
On her pillow is where I lay
I stroke her hair and kiss her cheek
And whisper in her ear
"Mommy, Please don't be sad today
I'm your baby and I am here"

So you see my dear sweet one
Your children are okay
Your babies are here in My home
And this is where they'll stay
They'll wait for you with Me
Until your lessons there are through
And on the day that you come home
they'll be at the gates waiting for you

So now you see
What makes a Mother
It's the feeling in your heart
It's the love you had so much of
Right from the very start

~Author Unknown

Rex's Birth Story

Here is the whole story if you are interested in reading it.  It is a bit long...but I wanted to write it down, so I would not forget.

As most of you know, I started having contractions on Friday night.  They were very painful because I had no amniotic fluid.  My doctors said there was nothing they could do unless they came closer together.  Finally the night before the c-section I couldn't stand the contractions any longer (plus I hadn't gotten any sleep for a few nights). Jon and I went to the hospital and they admitted me because progressing quite a bit.  They gave me some drugs to try and slow the contractions, but they didn't think I would make it to the morning.  By a miracle, we were able to hold them off until the morning and I was able to have my c-section at the regularly scheduled time (which was important so all the doctors would be there).  I was overjoyed by this triumph.  I just knew it was a good sign!

When Rex was removed I could see him in the anesthesiologist's goggles.  I saw his dark hair!   However, he didn't cry and I knew right away that was a bad sign. The NICU team worked on him for what seemed like an eternity!  Finally they called Jon to come over and they wheeled Rex by me. It was only for a second and I could barely see him.  I heard the nurse say "We have to go, he is very sick." 

I can barely remember the rest of the afternoon because I was SOO loopy from all the drugs. Jon is convinced the doctors really doped me up, so I would not worry about Rex. I was seriously talking nonsense!  Jon was able to visit him throughout the day, but the doctors were always working on him, so he couldn't get very close. Apparently they wheeled me up there at some point to see him, but I can't even remember.

That evening the doctor came down to tell us that Rex was not doing well at all and we should go say our good-byes.  We were able to visit with him for a few hours.  We touched him, kissed him and told him how much we loved him.  He was absolutely perfect.  We were also able to have him baptized, which makes me so happy.  It was a sad, but beautiful ceremony.

The doctors decided to try one more thing for him.  We were there for the first dose of medication and things started to improve a little.  The nurse told us to get some sleep and they would call us after they knew more after the second dose.  On the way to our room we saw the doctor and he seemed optimistic.  We went to bed so hopeful!

Then around 4:45 in the morning, the doctor called and said we needed to come up because he was not doing well at all.  We again spent time with him, touching him, telling him we loved him.  Then the nurses asked if we want to hold him - of course!  They took him off the ventilator and put him on a manual one. Both Jon and I were able to hold him, talk to him closely and kiss his sweet forehead. It was so wonderful and I am so very thankful that we got to spend that time with him.  Finally the doctor said that baby's heartrate was slowing down and if we wanted to stop the manual ventilation.  As much as I didn't want to, we did and after a few more minutes he left for heaven while still being rocked in my arms.

We had arranged for NILMDTS to come in around 7AM, so after he passed I helped the nurse bathe him and dress him (in his Super-hero onesie and Chargers MVP cap!).  It was so wonderful to finally see him without any tubes! Once he was dressed and wrapped, I held him until the photographer came. We had a wonderful photo session and I cannot wait for the pictures. After the photo session, Jon and I held him for a little bit longer until we finally said goodbye for the final time.  I miss him so much, but realize he was very sick and is now pain free in heaven.

Jon and I truly believe that Rex was Pher coming back to us.  We just cannot get over the fact that he passed EXACTLY one year after Pher.  I thought it was a miracle that Pher's angelversary of July 21 was between 37-38 weeks and when the doctors wanted to deliver me.  When we were asked our preferable c-section date we asked for July 21st, but it was full, so they gave us July 20th.  But even if we hadn't scheduled it then, Rex was ready to come on the 20th (hence the contractions!)  We truly believe he wanted to meet us and feel our love (and perhaps get a proper name)!  We also believe he wanted to give us comfort in our decision for Pher.  I now know both our sweet babies were very sick. We truly believe our little angel came back and fought hard until the end for his mommy and daddy.  What a wonderful miracle he is?  We feel so proud. Finally, I believe all the prayers and positive thoughts did not go unanswered, but just answered in a different way.  They helped us to realize how special our babies really are and to be at peace with everything.

Obviously I miss Pher and Rex so much it hurts. When the nurses told me that I could hold Rex for as long as I wanted, I asked "forever?"  If I could, I would have! My love for him is immense and I am sometimes overwhelmed by grief, but I do find comfort in thinking that Rex was Pher coming back.  I truly feel like the luckiest mommy in the whole world!

I also feel so lucky to have had all of your support through this journey.  Thank you to each and everyone of you. 

Thank you!

Thank you so much for the wonderful support you have given Jon, me and Sticky.  We feel lucky to have such amazing friends and family!

We feel very lucky to have been able to spend precious moments with our adorable son.  We were able to get him baptized on Wednesday night.  We were also able to hold him and tell him how much we love him. I was rocking him in my arms when he passed.  He went so peacefully.  After he left for heaven, I was able to help the nurse bathe him and get him dressed.  We had a photographer come from an amazing volunteer organization called Now I Lay Me Down to Sleep.  She took lots of pictures of sweet Sticky Bean, so we're looking forward to seeing those.  They are an amazing organization.  http://www.nowilaymedowntosleep.org/

We are meeting with a funeral home tomorrow to discuss our options.  I have had a number of friends ask what they can do for us.  We would love for you to keep us in  your prayers and thoughts. Also, someone at the hospital suggested that in lieu of flowers, friends and family could donate to PKD research.  There is a walk for PKD research in October and we have a team participating.  We would be honored if you would like to donate to Team Sticky Bean.  Below is our team home page, if you are interested.

http://www.pkdcure.org/stickybean

 Below are some pictures of our sweet baby boy that we snapped with our cell phones.

Mom with Baby Rex

Adorable toes

Daddy and our little fighter

The world's sweetest San Diego Chargers fan

He will live in our hearts forever...

I am incredibly sad to report that sweet baby Rex passed away in my arms around 6:15 AM.  He is absolutely perfect and I feel so lucky to be his mother.

Thank you so much for all of your support through this.

Happy Birthday Rex Christopher Symmes!!

We are so overwhelmed by all of the love being sent our way. Sadly - Sticky is very sick and he is not doing well at all. It appears that his lungs had not developed like we hoped. The doctor came by to tell us we should say our goodbyes. He is truly perfect and I love him so much. They decided to try one more thing -a surfactant. Praying he'll improve. Thank you so much for your support. We told Sticky about how so many people are pulling for him.

Thank you so much for the continued prayers!

Last day of pregnancy!

Today was our final ultrasound appointment.  Sticky passed his tests (as did I!) We wanted to end strong!  We received our orders for tomorrow's surgery. We'll be arriving at the hospital at 7:30 AM and the c-section is scheduled for 9:30 AM (if you want to send some extra prayers at that time!) 

Other than that, I'm still having contractions.  Apparently without any fluid these "early labor" contractions hurt worse than normal.  However, the doctors are not at all concerned about Sticky coming early, so we are good to go!  I have to admit that I had mixed feelings about Sticky's delivery because I feel like he is safe inside me, but with these contractions I'm more than ready, because apparently he is too! 

My friend asked me to post some pictures of Sticky's nursery, so I'm putting some below.  One picture is of Sticky's honorary "coming home" outfit.  Even though he won't be coming home right away and won't be able to wear any clothes at first we thought we could at least use the Super onesie as decoration in the NICU!  He should be able to wear a hat, so naturally the San Diego Chargers will be his first.  I like that it says MVP...because that is what he is! 

We promise to update the blog as soon as we can tomorrow. Again, thank you sooo very much for your continued support and prayers.  They mean the world to us!   Sticky is looking forward to "meeting" all of his supporters!

Bolt LOVES Sticky's room - mainly all the toys!

Sticky's first outfit. Super-hero and MVP!

Looking forward to when Sticky can sleep in his own crib

Final day!