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October 15th is Pregnancy and Infant Loss Awareness Day.

Today we remember the babies who were born asleep,

the babies whom we carried but never met,

the babies we have held but could not take home,

and the babies who made it home, but didn’t stay.

I will have a whole new family to join up in heaven!–Dekar and six (known) miscarried babies.

A candle will be lit at 7 pm in honor of them and all babies gone too soon.

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This does not include all the pages and links posted–And it’s also not necessarily in order. (If you come across any dead links I would really appreciate knowing about them.  Please use “contact” form.  Thanks!)

Dekar’s Obituary and other SAMPLE INFANT OBITUARIES 

Dekar gave us a lifetime of Love during his short time on earthwhat I sent out to inform people of Dekar’s birth and passing–it’s his story, in a nutshell.

Babies with Trisomy 13 or 18 (Dekar is included)YouTube video made by NILMDTS with images of T13/T18 babies

Slideshow of our time with Dekar, courtesy of Now I Lay Me Down to Sleepthe slideshow made for us by NILMDTS.  Danielle Felton took the pictures and Christine Barrack made the slideshow. 

“Dekar Day”–the 27th of every monthhow we remember Dekar on a monthly basis

Praying for a Miracle; Planning for a funeralhow I continued on after Dekar’s diagnosis and the plans I made for his arrival and passing.  This is not what a pregnancy is suppose to “look” like.   I also talk about regrets I have, the grace I gave myself,  and what I wish I could do differently.

My Experience with NILMDTSI had never heard of Now I Lay Me Down To Sleep before-so I wrote about my experience with them so others would understand them a bit more from a parent’s perspective.

The Heavy Burden of Empty Armswhat others don’t see when they look at me….

A Full LifeDekar had one!

Dekar’s Memorial Ornament, 2008 and 2009

HopeLink to Steven Curtis Chapman’s song WITH HOPE, along with lyrics.  It’s a beautiful song that I discovered soon after finding Dekar’s first memorial ornament.

A nurse’s thoughts and perspective on the birth of Dekar–my main nurse graciously shared her thoughts and gave me permission to share them.

Forever an infantas my other children grow, Dekar remains forever an infant

Dekar’s Name in the Sandone lady’s mission to help remember other babies who died too soon.

My Mom, A Pair of Shoes, and other poemsI just like these poems–I am adding as I find them.  Updated 11/06/11

I guess…some people have never said anything about the passing of my son…..

Dekar Day, another loss, faithful friends, and a random act of kindnessthe title just about covers it

Bittersweet milestone

First Mother’s Day without Dekar

The babies that were meant just for me

Happy Birthday, DekarDekar’s first birthday a small pictorial tribute to his short life

I Miss Dekar

Dekar’s Foot Impression and 3d Foot and Hand molds and another memory item

Strength–Coping with the very end result of the “Incompatible With Life” diagnosisthe hardest part was not knowing if I could handle holding my deceased infant son. 

Smiling for SharonSharon’s daughter, Charlize, was diagnosed the same as Dekar–hypoplastic heart and Trisomy 18.  Charlize blessed her family with 58 days!  She is a beautiful little girl and I’m so glad Sharon shared her life with me.

The Mourning Boothnot sure what to say or do for somebody who is mourning?  Watch this. 

A Pleasant Reminderone small effort is forever ingrained in my memory as one of the kindest actions I have ever experienced in my life.

Still Making Memoriesa memorial snowglobe created by a talented photographer/friend.

Dekar’s 22nd month in heaven–a letter to Dekar

Final Diagnosis–Trisomy 18the email I sent to family and friends to relate the news of our baby’s Trisomy 18/hypoplastic left heart diagnosis 

This is so good.

It is about understanding the valley we or others are going through–it validates our sorrow and pain. Look at the man in the booth—I know I can relate to that look and can “feel” that pain he is carrying.

This is also educational for those who may not understand how to respond to the pain we are feeling–how some responses are helpful and others are not.

THE MOURNING BOOTH–The Skit Guys

I remember sitting in the hospital the day after Dekar was born.  I stared out the window while eating my breakfast. 

I wondered why Dekar had to die when so many babies were not wanted.  Why Dekar, when so many were not loved and cared for by their mothers.  As soon as the question entered my mind, a gentle voice said, “That is why YOU were chosen to be Dekar’s mother.  Because despite his diagnosis, I knew you would still give him a chance at life.”  Then I thought of what could have happened with Dekar, specifically,  if he had been one of those other women’s child—-and it stabbed me in the heart but then I was flooded with peace.  Even though I felt the loss deeply, that gentle voice answered the question of “Why my baby?”  Because Dekar was meant specifically for me.

Dekar was not just any baby–he was MY baby.  God gave him to me, knowing I would be the best mother I could for him.  No matter the outcome he would still be my son.  Would I have really wanted him to be somebody else’s–knowing that they would abuse, abort, or not care for  him?  No. 

I would never make light of the questions people ask:  “Why me, why my baby….why, when I wanted a baby so bad?”  If it were up to me NO babies would die or be hurt in any way.  But I’m not in control of any of that.   My recent miscarriage made no sense to me, and still doesn’t.  The first thing I did was throw up my questions to God: What was He thinking?  How could He allow this to happen?  Why?   I lost Dekar, why did you allow me to lose another one?

Even though I am not carrying that baby any longer and will never hold that baby in my arms, it doesn’t change that fact that I am still that baby’s mother.  I still held a life inside of me that was precious.   I still mothered that baby the best I knew how, just as I did with Dekar.  

I can be sad about the outcome, but I can also thank God He gave me a baby to love–a baby meant for me, and nobody else.

From April 27th, 2009

Today Dekar would have been 10 months old.  On my FaceBook account I simply typed out “Ice Cream”.  I knew what it meant, and it didn’t matter if anybody else did.

This time “Dekar Day” is hitting me a bit harder because I am also dealing with the loss of another baby. 

On April 8 I went into my first prenatal appt., very excited about the first ultrasound that I would be having with my new pregnancy. The due date would have been in mid-November.  As soon as Dr. Jeakle started the ultrasound, I knew something was not right.  He was humming—when my husband hums, I know that something is up—and the volume on the machine was not turned up so that I could hear the heartbeat.  I knew it was taking too long for him to find what he was looking for.  Long story short, my doctor saw the little baby just fine, but the heartbeat was not detected.   I was numb.  It was not what I expected at all.  Add to the frustration is the fact that the little baby measured perfectly—according to my date I would have been just over eight weeks along, and that’s how big the baby measured.  The baby’s heart may have stopped beating seconds before the ultrasound.

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I left that appt. not understanding anything any more.  I just looked up at God and threw Him some question marks. 

I had hoped to let the miscarriage happen naturally, but found the waiting to be harder than I anticipated.  It reminded me of the time I was waiting on Dekar to be born.  Even though I knew Dekar may not be born live, I had that tinge of hope to hang onto.  With this—-there was nothing.  I was just waiting for the inevitable.  Two weeks later, after no signs of miscarrying,  I requested another u/s and went home with the confirmed bad news–but still desiring to miscarry naturally.

I couldn’t take it.  Once I got home everything hit me hard again.  I called the doctor’s office and left the message that I am emotionally spent and didn’t know what I wanted.  The doctor called me back and was again very compassionate–he didn’t push me into anything and he let me make my own decisions through the whole process.  We scheduled a d&c, which was performed on Friday, April 24th.  I was not happy about it, but I felt it was better for me and my family to get it done.

Today I received a call from the hospital to see how I was feeling after the surgery on Friday.  My pain is keeping me up at night, so I did a follow-up directly with Amy, Dr. Jeakle’s nurse.   Pain meds would be ordered, and after talking “business” I asked if she had a Girl Scout, since I wanted to buy some cookies and didn’t know any who were taking orders.  Found out that ordering was over, but Dr. Jeakle’s wife orders extra.  Good.  At least I can get some Thin Mints and Samoas.

While in town to pick up the pain meds and ice cream treats for Dekar Day, I got a call on my cell–it was Amy, telling me the cookies were in.  That was quick, and such perfect timing!  I asked how much they would be, and she said, “Nothing.  I think you could use some G.S. cookies so we threw a bag together for you.” 

Indeed, she and some others at the office (I am not sure who) put together a bag for me—four boxes of Girl Scout cookies, other candy treats, and a candle.  It was a random act of kindness that meant more to me than they will ever understand.   They went beyond their “work” mode and treated me with a measure of warmth and friendship that I won’t forget.  It was just. so. nice. 

After I got home I plopped in front of the computer with a box of cookies…..(and those who know me know I am not sappy)—-I got a lump in my throat when I saw a bunch of my friends let me know that they had eaten ice cream, or planned on it,  in memory of Dekar.  Through facebook and email, I was told they remembered…..

Tonight as I eat my ice-cream with my husband, I expect it to have a whole different feel to it.  I will not only be mourning the loss of Dekar but also mourning the loss of a baby I never met, but desperately wanted to.   Maybe they are eating ice-cream together in heaven?…..

Before I go to bed I’ll look at my children and thank God for the gifts that He has given me.    And I will be sending up a special thank you to Him for putting people in my life who will show a random act of kindness and for all of the others that remind me they care—especially at a time when I needed it the most.

Click on the picture to see Dekar's memorial.
Click on the picture to see Dekar’s memorial.

to-write-their-names-in-the-sand-bu

 

 

 

When I was pregnant I was active on a pregnancy board with other ladies due the same time as me.  I visit the board occassionally and keep up with some of them who have blogs.  

I see the pictures of their babies and how cute they are.   It doesn’t bother me to see the pictures, because I am truly happy that they have healthy little babies to hold and love.  I’m happy they got to take their babies home.  But at times it hits me that the pictures of Dekar that I have are the ONLY ones I will EVER have.  He will forever be that little infant…..it’s like part of my life is fragmented off because as my other children grow older, Dekar will always remain an infant.  It’s just weird.

Dekar would eight months, and I love that age.  They really start taking on more of their own attitude and personality.  They smile a lot.  They are a bit easier to care for because they can sit well on their own and entertain themselves.

A few days ago I was sitting on the couch with my son, Mel (4 yo).  I told him that we’d get to have ice cream soon for Dekar Day, and that Dekar would have been eight months old. 

“If Dekar were alive he would be driving you a little crazy, Mel,  because he’d be getting into all of  your toys.” 

“Yeah,”  said Mel, “But he could play with them!” 

“Yes, he could.  And I bet he’d try to chew on you— and drool, too!”  Mel’s eyes brightened up and he giggled after he thought about that for a while. 

“But he could play with my toys, and that would be nice!” 

Yes, it would.  But, Dekar isn’t here to play with toys, chew on his brother, or drool on his clothes.  I do notice that Mel’s eyes brighten up when we talk about Dekar.  Although I am not sure any of my kids understand the importance of Dekar Day, I do hope that it becomes so ingrained in them that even when they are off to college, get married, and have kids of their own, they will pause on the 27th of each month and eat some ice-cream in honor of their brother who is forever an infant.

Rachel holding Dekar with Mel looking on.

Rachel holding Dekar with Mel looking on.

“Waiting for Dekar to be born, in the O.R., Dr. Mann, Sue, and I were aware that he had Trisomy 18 and a hypoplastic left heart ventricle.  We knew this meant that he would probably not survive for very long, or possibly not even be born alive.  His parents, Marge and Cortney, had known for some time about Dekar’s condition, and had come up with a very carefully thought-out birth plan.  Our priority as the health care team was, upon delivery, to take care of Dekar’s immediate needs as quickly as possible so that Cortney and Marge could hold him and spend as much time with him as possible..  We all watched as Dr. Jeakle lifted Dekar out of Marge’s womb and cut the cord.  We listened for that first cry, which didn’t come.  Dr. Jeakle brought him to the warming island–he was so blue and barely breathing.  But I remember noticing how sweet he looked–tiny, with lots of dark hair. 

Many thoughts raced through my mind as I dried him off—He’s so tiny–He looks so perfect–PLEASE BREATHE.  Dr. Mann listened to his heart beat.  He tapped the heart rate out–at first around 100, but very quickly dropping to 70’s, then 60’s.  Dr Mann asked me to give him some positive pressure ventilation.  I gave him several breaths, while Dr. Mann continued to listen to his heart and tap out the rate, which continued to drop into the 50’s. 

At this point, Sue, Dr. Mann, and I all thought that Dekar was not going to make it.  So we quickly wrapped him up and took him over to meet his parents.    When Cortney held him and Marge started talking to him, is my first recollection of hearing him cry.  This is when it seemed to us that he started trying–fighting–once he was near Marge and Cortney.  We could see him become more vigorous with his parents.

At this point, Sue, Dr. Mann, and I felt conflicted.  Dekar probably could have stood to be suctioned, but his heart rate was still very low, and we were reluctant to take him away from his parents.  We were still thinking that it didn’t look like he would survive.  At that time, though, Marge thankfully asked if we thought he should be suctioned.  We quickly took him to the island, suctioned him, and listened to his heart rate, which was actually starting to rise.  He returned to his parents, where he continued to have more effective breathing efforts, and a little stronger cry.  By this time Dr. Mann got a heart rate between 130’s and 150’s, but Dekar’s color was still pretty blue.  We were able to give Dekar some supplemental oxygen by mask while he remained snuggled with Marge and Cortney during the completion of the surgery.  His color did improve, and his heart rate stayed in the 130’s to 140’s.  Dr. Mann, Sue, and I were becoming cautiously optimistic that this little guy would get to meet his siblings.

Once Marge’s surgery was completed, every one returned to her room.  Dekar was carried by Cortney.  He appeared at that point to be holding his own, without the supplemental oxygen. 

It was a real privilege and honor to be present while Dekar got to meet all his siblings.  He truly seemed to respond and be aware–there was so much love in the room for that little baby!  After a couple of hours, with Dekar continuing to hold his own, I was given the opportunity to weigh, measure, and bathe him.  His sister, Rachel was right by my side, watching everything I did.. 

I will always be grateful for the chance to meet Dekar and your whole family–and to be able to share in this special, yet difficult time in your lives. 

May God bless you all. 

Kathy D. RN”

Shortly after coming home from the hospital I told the family that the 27th of every month will be “Ice Cream for Dekar” day.   This is a way that we can keep Dekar’s memory alive, and it’s a fun thing to do.  I would get hassled by my family that I would go out for ice cream so much while pregnant—but I loved feeling Dekar kick and ice cream seemed to do it for him!  I don’t know if it was the sugar or the coolness, but he reacted. Since we had gotten his diagnosis of Trisomy 18 and hypoplastic left heart, those kicks became even more precious to me.   I looked forward to each outing and the movements that would soon follow.

So, July 27th we all went out for our first “Dekar Day”.  My oldest son said, while licking ice cream, “I’m sure glad that Dekar didn’t like meatloaf.  I mean, what would be the fun of having meatloaf every month.”  🙂

Eating the ice cream brings back fond memories for me.  It also conveys to the kids who may not otherwise remember Dekar that their little brother is worth remembering and celebrating.

_________________

February 27, 2009

Today Dekar would have been eight months old. 

Sigh.

—————————

I have rootbeer and ice-cream ready to go for tomorrow.  (March 26, 2009)

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On Dekar’s first birthday we all had ice cream cones covered with sprinkles.  What was so funny to me was hearing from several  friends that on Dekar’s birthday they ALSO had ice cream with sprinkles!   I’ll never look at ice-cream with sprinkles the same!

Another version of the slideshow is here.  (You may need to download and/or accept ActiveX.)  It is the original and much cleaner/sharper looking. 

Thank you Danielle Felton  and Christine Barrack for giving of your time and talent.  Your sensitivity, kindness, and compassion will never be forgotten.

 

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