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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 

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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.

“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”

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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