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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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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

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.

After the diagnosis of Trisomy 18 and hypoplastic left heart, my head swirled.  I kept praying that God would heal Dekar.  But having experienced a child that went through cancer**, I knew full well that God sometimes has other plans and allows us to go through very difficult situations.  So, as I prayed for Dekar’s complete healing, I also prayed for guidance and direction to plan for the worst case scenario.   I started scribbling notes on what I should look into.  Below are items I researched and discussed, along with things I wish I had done or questions I wish I had asked.  I am also linking to the Now I Lay Me Down To Sleep forum where parents weigh in on this matter in more depth.

These are items that were on my mind at the time (or things I wished I would have done.)  The Birth Plan is the outcome of researching most of the items below. (This page will be updated as time goes on and my memory is refreshed.) Last updated June 18, 2009.

MY CARE:

  • What would be best for me?  Natural delivery or c-section?
  • If I chose c-section, what pain medication would allow me to be as alert as possible after Dekar’s arrival?  (Discuss with ob nurse and doctor.)  What pain medication will allow me to be the most mobile?
  • If I go into labor naturally, do I want pain medication?

DEKAR’S CARE:

  • What will give me the best chance of seeing Dekar alive–natural delivery or c-section?
  • If Dekar is able to eat, will he be able to breastfeed?  If not, what other options are available?  Will a nurse be able to teach me to tube feed him?  What is the hospital equipped for?
  • Can he have surgery to fix his heart? What outcome could I expect?

IF HE IS ABLE TO COME HOME:

  • Contact local hospice and talk to them.  What do I need to know?

IF DEKAR DIES:

  • How long can I hold him after his death? Does the hospital have a policy for deciding this time frame?
  • Does the funeral home have a time frame for picking him up?
  • When do I get his clothes returned from funeral home?  Will they be washed when they are returned? (We chose cremation, so his clothes were returned to us.  I suggest removing the clothes and reclothing at the hospital directly before sending the baby to funeral home.  Dekar’s clothes were returned smelling of the funeral home, and that made me sad.)
  • Cremation or burial?
  • What funeral home?  (Don’t assume the local one in town will be the best to serve your needs.  Meet with the funeral director personally.  Choose your funeral home as carefully as you would pick your doctor.)
  • Will you be able to view your child again if you choose cremation?  In other words, once the funeral home has him, is that the last time you be able to hold his earthly body?  Some funeral homes allow another viewing before the child is taken for the cremation, some don’t. 
  • If I choose cremation, how do we receive the ashes of our child? 

OTHER STUFF:

  • Can we camcorder the delivery in the operating room (c-section)? 
  • Pictures—have a couple cameras to use, along with plenty of batteries.  Buy extra disposables, just in case.
  • Is there a Now I Lay Me Down To Sleep photographer available?
  • Do I need to supply the material for the casting of his feet and hands?  (Kits available at Michael’s.  Buy a few since they don’t always turn out perfectly.  I did one of each hand and feet.)
  • What does hospital provide as far as making memories?
  • Finalize a birth plan.  Make several copies.  Have doctor read it at each visit as it is updated.
  • Make sure staff  knows how to spell and pronounce Dekar’s name.
  • Take a special blanket to hold Dekar in.

Even now, I still feel I covered everything as well as I could–however, I admit I have some regrets.  I don’t dwell on them.  I don’t beat myself up for them.  If they pop into my mind, I think about them, deal with the emotions that are tagged to them, and thank God that I really did do as well as I could at the time, given the circumstance.  If I let these regrets overtake me I would be miserable and bitterness would rule. I have to give myself grace.  Besides the hard diagnosis, I had a c-section and on pain control.  My thought process was not as sharp as it is on a “normal” day.  I was tired and trying to make the most of the whole situation.  Sigh.  All that said, here are my…..

THINGS I WISH I COULD GO BACK AND CHANGE:

  • Have an extra outfit to change Dekar into before he was taken off to funeral home.  When I got Dekar’s clothes back they didn’t smell like him any more–they had taken on the funeral home smell.  That made me sad.
  • I wish I had spent the whole night holding Dekar after his death–allowing the nurse to cool the baby at intervals as needed. 
  • I wish I had changed at least one of his diapers.
  • Clarify what “standard suctioning” is so that I knew we were on the same page with that instead of assuming we were.
  • Not allow the dr. to go do an exam on Dekar.  Looking back, there was simply no need for it. 
  • I wish I had taken off the hat that the nurse put on him and replaced it with the one I brought right away. 
  • I wish I had been prepared to know how Dekar’s ashes would be delivered.  Because we didn’t purchase an urn right away,  we received his remains in a thick plastic bag which was in a cardboard box.  I just wish I had known that beforehand.  I would have been more proactive about getting a permanent “resting place” for Dekar.

**My oldest son is almost sixteen years old and a cancer survivor.  He had hepatoblastoma with metastasis to the lungs.

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)

_________________

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.

 

Dekar arrived via c-section at 10:46 a.m., June 27, 2008. He was diagnosed with Trisomy 18 and hypo-plastic left heart syndrome and not expected to live long. He was not born kicking and screaming. In fact he was quite quiet with poor color. Dr. Mann checked his heart rate and it was approximately 100 bpm. His heart rate kept decreasing and he wasn’t making good breathing attempts so he was quickly handed to Cortney. (We had stated in the birth plan that if his condition was deteriorating that we would like to be the ones to hold him when we was taking his last breaths.)

When I first saw Dekar, it was clear that he was not doing well. His color was grayish blue. He was silent, but looked like he wanted to cry, or do something. I looked at Cortney and I believed at that time that Dekar would not make it out of the room alive to meet his siblings. I am not sure all that happened in the surgical room. One of my initial concerns going into the c-section was that I would not be able to hold it together during the surgery. Although I did get a bit emotional, I still was in control and awake, and that’s the best I could hope for. I did become quite light headed and woozy though. The time was passing quickly, but so slowly. Dekar just didn’t look like he had much life in him at all and it tore me apart. But I tried to soak up as much time with Dekar that I could.

Cortney held him most of the time as I was strapped, with one arm free and not at a good angle. We both cried and prayed. Dr. Mann checked his heart rate again and it was holding at about 60–still very low.

We both talked to him and I saw one of his little eyes open and he started making some sounds. It was like he wanted to breathe, but couldn’t. I requested the nurse to suction him more, as I could see he had drainage around his nose and he most likely had more in there that he couldn’t get out.

After he suctioned him more they also gave him extra oxygen. He made more small noises, but never a big cry. He continued to make his little “complaining” noises. His heart rate increased to about 150 and his color got a little better.

At this point, Dekar was now more stable and I was ready to go to a regular room. Cortney carried Dekar. At the end of the hall we saw that Hali arrived with all of the kids and they were entering their waiting room.
During the next few hours Dekar continued to hold his own. He opened his eyes, showed his unique character through facial expressions and even smiled a little.

He still hadn’t cried hard; just made little crying noises. He was passed around from person to person–meeting each of his siblings and being lavished with love and kisses, told how cute he was. He opened his eyes, a couple times very wide. He most often had a “popeye” look with his right eye opened and left eye shut.

I had desired to give Dekar his bath, but I knew that even with all the pain control I wouldn’t be able to do it. I requested our nurse to bathe him, as he was really covered thickly in vernix. I smelled the freshness of new birth one last time and handed him to Kathy for his bath. Cortney gave her the outfit I had picked out for him. She asked if I wanted her to do the bath by me, and I declined because I felt so weak. She asked if any of the kids or Cortney wanted to participate. I think Rachel and Hali both watched for a while.

At this time he was also weighed and measured. He was 4 lbs 14 oz and 18″ long–this was after a couple good poops and pees. I thought he was heavier; he really did look bigger to me. Head, 13″ and chest 11″.
Bathing him actually improved his condition a bit. His color was better and he got bundled up to retain more heat. His cheeks even got some pink color and almost looked like a healthy newborn.

After a couple hours the kids went home, with plans to return later. The hospital was very accommodating to us and had a huge snack spread, and offered pizza for later on. They planned on coming by around 5 pm.
When the kids left Cortney and I settled down to nap. I snuggled up with Dekar, knowing he might not be “with” us after the rest. But I cherished every moment I was able to hold him. I didn’t sleep. I was so exhausted, but I think I just wanted to be awake and aware for Dekar. I heard him make his little noises and would soak it all in. Cortney said I was snoring, so if I did rest, I honestly wasn’t aware of it.

The kids showed up again around 5 pm. They all took turns eating pizza and holding Dekar again. Dekar again was lavished in love by his eight siblings. At times he looked very alert and had his eyes wide open. Hali captured a beautiful picture of him smiling which we are enclosing with this letter. Dekar was talked to, rocked, swayed, and loved up.
Cortney brought him to me with a concerned look. Dekar was not as responsive–his eyes were more fixed and glazed and he wasn’t making his crying noises. I told him to have the nurse look at him. The heart rate was much lower–around 50 bpm, down from the 130-150 that he had been holding.

I had Cortney go get all the kids so they could all say good-bye. We told them that his heart was not going to last much longer and he would be gone soon. We all cried.

As I was holding him I knew that he was now looking into the eyes of Jesus and no longer here with us. The nurse checked him and asked to take him to his bassinet to listen to him there. She looked at us and said, “I don’t hear a heart tone.” (7:10 p.m.)

In the anguish of his passing I also remember feeling very blessed that we were all able to be with Dekar when he passed on. If I could have planned it all, it coudn’t have been more perfect for a sad situation. All of us were able to welcome him into the world and each of us were able to say good-bye. We were able to share our love with him, and he shared his love with us. God timed everything so perfectly. He was not in pain, and passed peacefully.

Dekar was so beautiful and precious.

After Dekar’s initial diagnosis Dr. Jeakle (my OB) had shared a story of when he worked downstate and a baby that was delivered had Trisomy 18. The colleague he worked with looked at the parents and said, “You have a couple hours to give your baby a lifetime of love.” I thought that was so beautiful, and so fitting for our situation. I held on to that, knowing our case was similar. On the bottom of my emails it has read, “We have a short time on earth to give Dekar a lifetime of love.” Now that all is said and done, it was Dekar who gave each of us a lifetime of love during his short time on earth.

Thank you, Dekar, for sharing all of your love with us. You will always be deeply loved and deeply missed.

And whoever receives and accepts and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me.”
~~Matthew 18:5~~ (Amplified Bible)

Dekar’s Now I Lay Me Down To Sleep Video

 

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