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Some people who stumble across this site may wonder “why”?  Why have a site dedicated to a lost baby?  Well, for me, I started it as an easy way to share Dekar’s Now I Lay Me Down To Sleep video.  It also was an easy way to share his story without having to send it out individually.  I didn’t have the energy for that.  Then I just kept adding posts here and there.  Some I have removed, but most I have kept posted.

When I look back and read some of the stuff I posted, honestly…..I cringe.  I don’t really like what I wrote, or the tone I wrote it, or the way I conveyed my feelings.  But I keep them there because it is all real. I could go back and edit things, but I wrote what I wrote and I stand by the words I wrote, even if they aren’t pretty or eloquent. If I changed anything now, I would take away the reality of what I felt at the time.  Grief is a weird thing. Some days I could feel fine and felt “over” the loss of Dekar, and then the next day I could feel so sad that it felt like a truck hit me.  So my up/down, nice/not-so-nice posts are all real

Here we are, three years and five months later.  And here is more of my reality:

  • We still have a Dekar Day every month.  We break out the ice cream or some other too-sweet treat and remember Dekar’s short, but full life.  My one son never made the connection that we did this on the 27th because Dekar was born on the 27th….but now he knows. 🙂 Today is that day!–We will likely go to a store and pick out whatever flavor strikes our fancy.  Sprinkles have become a frequent occurrence of the memory celebration.
  • I have a box of Dekar’s photos that are still not in albums.  I requested that they all be printed in order–from birth to the last moments–so that the albums would show the flow of his life.  But I can’t do it.  I haven’t even opened the box to look at the photos.  Why not? I don’t know.  I just can’t do it.  For my birthday I requested some photo albums specifically for this purpose–thinking that would help me make the next move.  Well, my birthday was in October, and the albums and box of photos still sit.  Someday.
  • Dekar’s ashes are still in the box that the funeral director gave me.  I thought that once I got the perfect urn that it would not be a hard thing to have the ashes placed in the urn.  Wrong.  The urn sits in my memory cabinet, and the ashes sit in the cardboard box in my closet.  It’s another thing that will happen Someday.

I keep this site up now not so much to share Dekar’ story or video, but because many people search for baby obituaries.  I know how helpful that is for them–it was in the reality of what I was going through that I saw the need to have a reference site of baby obituaries. 

I also keep this site up because it was, and still is, my reality.  I also know there are others going through their own reality that may be similar to mine:  I was pregnant, Dekar was given a diagnosis of “incompatible with life”, I hit the grieving stage from the moment of diagnosis,  I carried to term, I wondered if Dekar would open his eyes and meet his family, I said hello, I saw him smile,  I said good-bye, I wrote an obituary, I gained too much weight while pregnant, I encountered kindness, sincerity, coldness and indifference.  Put a million other realities in there, and that is my story.

In all of this I did the best I could.  Just like with this blog–it has simply been my reality.  I am not a “professional” blogger and don’t have any desire to be.  But I do want people who have had to deal with the loss of a baby, directly or indirectly, have a place where they can safely say, “I can relate to that” or “that helps me understand why my sister is acting a bit off, even a year after losing her baby”  or “these obituaries are really helpful–I have no idea how to write a baby obituary….” 

Maybe you can’t put your photos in albums, or your baby’s ashes in the urn.  Or maybe you are just the opposite and look at the photos every day and light a candle by the urn every morning.  Our realities are the same–just dealt with in a different way. There is no right or wrong.  All I know is that I would gladly share an ice cream with you, listen to your story, and love having the opportunity to share mine.

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The month of Dekar’s birthday has been funky for me the last two years.  If you have lost somebody special in your life you may understand.  For me this means I may be more somber and melancholy.  Other times I’ll want to keep busy and do something productive to pass the time. Some days I’ll notice I’m simply out of sorts–in a funk! 

As time has gone on I’ve recognized this as my way of working through the grief and acceptance of losing Dekar.  These things don’t catch me off guard or make me question myself as they used to.  I just take them as they come. Grief is a weird thing and definitely different for everybody.

Since this is Dekar’s birthday month I am going to post a new picture or memory of Dekar when I feel the need to help me work through the “funk”.

Day One–Dekar’s Roses

Day Two–Dekar’s Smile

The other day I spilled coffee on my laptop.   From what I can tell, the laptop is dead.  With that laptop I had journalled my pregnancy/experience with Dekar and that is where I kept all of my photos.  I never backed up these things.  I never saved the pictures of when I was pregnant with him.  Stupid.  Stupid.  Stupid.  Thank God I had my dh save the videos of Dekar’s birth and passing and my NILMDTS photographer gave me a copy of all of his photos.   If those were lost………..I don’t even want to go there. 

Please do not make my mistake.  If you stumbled upon this site because you recently lost a baby you are likely in a state of grief and not thinking as clearly as you usually do–if you are reading this, please stop now and save anything that you have on your computer that you don’t want to lose.   Photos, videos, journals, emails–anything that you don’t have backed up on an external source.  If you don’t know how to do it or it isn’t in your area of comfort, find somebody who can do it for you. 

You may be the parent, sibling, spouse, or friend of someone who has lost a baby or will lose a baby……If you are in the position to offer assistance to a person who could use some extra support in this area, please do it.   It is a big deal–believe me.   For some people this computer stuff comes as second nature.  Not for me.  I kept *thinking* of backing everything up and never did it.  Add to procrastination the lingering fog of grief and it’s a bad combination.  So many memories of all my children are possibly gone forever…..and I should have known better. 

One stupid spilled cup of coffee later and here I am……Yeah, I’m beating myself up and mad at myself—-I’m also extremely sad.  I can’t go back and change anything, but others can learn from my mistake.

😦

I’ll be contacting a professional to check my hard drive–I’m praying it can all be retrieved.

 

Dekar smiled shortly before passing on.  I was holding him as he was taking his last breaths and he looked at me and smiled.  It was such a blessing and equally amazing that my daughter actually caught the fleeting smile with her camera!   Whenever I see Dekar’s smile I remember how I felt -it was a bittersweet feeling of believing he enjoyed his time on earth and yet he knew it was his time to go Home. 

His smile was a “thank you” and a “good-bye”. 

He only knew love on earth, and now he only knows love in heaven.  And I can hang on to the hope that I will see him again. 🙂

Teresa Howell offered her artistic talent to make the above memorial snowglobe for the holiday season.  Thank you, Teresa!

I know there are many parents who are scared when they get the “incompatible with life” diagnosis.  They know that diagnosis equates with “death”….and that isn’t what a pregnancy is suppose to look like.  I am sharing the following because I was scared too. I knew I would be holding my deceased child, and I didn’ t know if I would find the strength to do it, but I knew I had to, somehow.

————————————————————————————————————–

“You never know how strong you are until BEING strong is the only choice you have.”

I’m not sure where I first read the above statement, but how true it is. 

I was praying for a miracle but  planning for a funeral–I held onto the hope that I could take Dekar home and be able to care for him and enjoy his little life.  I discussed feeding and care options with nurses and doctors.  I knew it probably wouldn’t happen, but if it did I wanted to be prepared.  But there was NOTHING I could do to get myself psyched up and ready to hold my deceased son!  Nothing!

I remember telling my hospice counselor, Pam, that I wasn’t worried about taking home a special needs child–I could educate myself on that; what I wasn’t sure about was whether I would have the strength to hold my dead baby.  The thought of it terrified me–how do you prepare yourself for that?  She assured me that I already had the strength.  Well, she could say that until she was blue in the face, but I wasn’t convinced.  I don’t know if scared is the right word….maybe anxious better describes my feelings at the time.  I didn’t know what to expect–but I knew it wasn’t going to be easy.

All I could do was pray and breathe.  Breathe in; breathe out.  Each day after the diagnosis I wondered when Dekar’s life would end.  I wondered if I’d be blessed to be able to look into his eyes.  I wondered how I would endure the pain of seeing my son, lifeless in my arms.  How would I have it in me to face death so up close and personal and ALSO endure seeing my husband and other children face the loss, too?  

Would my arms be strong enough to carry death?  The death of my baby?  I knew I didn’t have that kind of strength in me.  But I also knew I had no choice–when it came to that time, being strong would be the ONLY choice I would have. 

Although I don’t know the exact moment that Dekar’s eyes met Jesus, I do remember looking at him and realizing that he didn’t just look like a little baby any more–he now looked like royalty.  In just a few moments time he took on the appearance of a little prince, with facial features totally relaxed, yet appearing strong and stately at the same time.  

I never expected that the last couple hours of holding Dekar would give me the most smiles.  Here I was , holding the deceased body of my son–the moment I was previously fearing and dreading–and I was actually smiling.  He looked glorious to me.  Yes, I cried many more tears, but he looked so peaceful and beautiful that  I couldn’t help but smile.  His appearance, although lifeless, was magnificent and noble.

When the time had come for my last good-bye, I remember handing over Dekar to the funeral director and saying, “It’s okay.” 

 “It’s okay?!”   Perhaps it was exhaustion speaking, but more than likely it was that in that moment I realized that I had been given the glorious gift of fleshing out the verse, “….My power is made perfect in weakness.”

I can still vividly remember that initial conversation with Pam, telling her I wasn’t sure I could handle holding my dead son.  And I now look back and think of how amazing it is that I actually did it, and how it was not all what I presumed it would be.  I thought holding my deceased child would be terrifying, but the last moments of holding him actually were precious.  Although his body was lifeless and his passing was heart wrenching, being able to soak in his beauty is something I would never trade for anything.  Dekar’s presence made me smile, even when I could no longer look into his eyes.

 ———————————————————————————————————————————-

I feel compelled to add that I recognize that I was “fortunate” to have known that Dekar would not live long if he would be born live at all.   (I don’t like the word “fortunate” to be connected with the diagnosis of a terminal pregnancy, but because of the diagnosis we were given the gift of preparation.)  Although the knowledge didn’t make things easier, it did afford us the ability to prepare in many ways, including having the opportunity to wrap our brains around the fact that we would be holding our deceased son.  Many parents are not given that “luxury” and the unexpected death of their child takes them by storm.  It is tragic and heartbreaking.

We are fortunate to live in a time where infant death and the very real grief that goes along with it is being recognized and not shoved into a dark closet and never talked about.  The NEWSWEEK article “A Vast and Sudden Sadness” covers the subject quite eloquently.  Infant death is a hard thing for all involved and the more people are educated on this subject, the better.

There are many organizations and ministries now that reach out to those who have lost a baby.  Many hospitals now hold grief support groups for those who suffered through miscarriage or early infant loss.  Parents like me blog about their children and their experiences–it all helps in the healing process. 

Now I Lay Me Down to Sleep recognizes the importance of creating memories in order to help cope with the grief of a newborn loss.  These memorial photos are taken by volunteer professional photographers and are true heirlooms that will be forever treasured by the parents of the baby that was taken too soon.   NILMDTS is still expanding and trying to get into as many hospitals as possible–please consider donating your time, talent and/or money to this worthwhile organization. 

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 

I never heard this song before today. It fits in so perfectly with the memorial ornament I purchased.
hope2

WITH HOPE–STEVEN CURTIS CHAPMAN

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you’ve gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God’s plan
But through the cloud of tears
I see the Father’s smile and say “Well done”
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
‘Cause now you’re home
And now you’re free, and …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

We have this hope as an anchor
‘Cause we believe that everything
God promised us is true, so …

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

It’s hard to know what to write for an obituary when a whole life is encompassed in just over eight hours.  The funeral director didn’t handle many baby/children’s funerals (thank goodness) and he didn’t have a template to work with that was suitable for an infant death.

I did some research on the internet, thinking it would be quite easy to find a guideline for an infant/child obituary.  I was saddened that there was little to no help.  We didn’t plan to have a service, since we felt that we had our own private time right at the hospital.  We decided to have him cremated because we don’t have roots in this town and didn’t want to end up leaving him should we ever move.  But I still wanted to honor Dekar and the life he gave us, even though it was short.  I wrote up an obituary that said everything I felt was appropriate.  The funeral director fixed it a bit, and then it was sent off to the newspaper, both online and print.  I didn’t realize there was a price associated with submitting an obituary to the newspaper.  We decided to just post it in the local paper, who also posted it online.  This made it convenient to share with the many family members and friends who are out of town.

Below is Dekar’s obituary.  For our situation it covered the basics.  Some parents add a special note to their baby or a poem.  Some share a picture.  Some may want to include the reason for death.  (I am not sure why I didn’t include that—if I could do it over, I would add that he had Trisomy 18 and hypoplastic left heart syndrome.)

Dekar Ezri Schmidt passed peacefully in the arms of family on June 27, 2008.  He was born at 10:46 a.m. and met the eyes of Jesus at 7:10 p.m. the same day.

Dekar was the son of Cortney and Marge Schmidt of Atwood (Ellsworth).  He is survived by eight siblings, Hali, Aaron, Solomon, Eli, Rachel, Jadon, Melchizedek, and Isaiah, all at home.

His paternal grandparents are Jerry and Judy Schmidt of Tomahawk, Wisc.; and maternal grandmother, Laura Pehoski of Stevens Point, Wisc.

Dekar gave us a lifetime of love during his short time on earth.

The Now I Lay Me Down To Sleep Foundation provided a volunteer photographer to record his short life with us.  In lieu of flowers we would be pleased to have you support their mission to help other grieving parents through their remembrance photography at: The Now I Lay Me Down to Sleep Foundation, 7800 S Elati St. #111, Littleton, CO 80120, or:  http://nowilaymedowntosleep.org/pageDisplay.php?page=42. Winchester Funeral Home in Charlevoix is handling the arrangements.

If you are in a situation that you are using the above as a guideline, I am very sorry and my heart goes out to you.  I pray that this will serve to take away a little bit of added burden associated with your loss. 

Since there is a need, I am working on a separate page of sample obituaries which other parents have graciously offered to share.  I am updating it as often as a new obituary or memorial is offered. 

 

I had never heard of the Now I Lay Me Down To Sleep Foundation (NILMDTS) before Dekar’s diagnosis.  After I had shared the news with some friends a few of them mentioned NILMDTS’s work.  Honestly, my brain was numb.  I put it on my list of things to think about, and left it there. 

After some of the fog cleared, I inquired again about NILMDTS.  Some people couldn’t remember the name, but knew there was a group of volunteer photographers who will take pictures of your baby who died too soon.  Another lady could tell me that the name was a children’s nursery rhyme or prayer.  Finally, I got the the full name and was informed that they had a website.

I did a search,  entered the website, and that was as far as I could go.  The pictures that are displayed on the main page took my breath away and brought tears to my eyes.  The pain was too close to my heart, as these were photos of people who have already lived what I would be going through. 

I did a search for a photographer in my area, and unfortunately, there was nobody nearby who signed up for the hospital I would deliver.  I then hit the “contact us” button and typed this letter:
“Hello,

I was referred to your site. 
The closest photographer I see is in ____, and from his profile it appears he only services that area hospital.  (We are about 50 miles away from ______.)  Our zip code is #####–we are a smaller community, but I would still like to see if somebody might be available to do a photo session. 

If you are needing to know—my child was diagnosed with Trisomy 18 and will likely die before or soon after birth.   My original due date is July 1, but this could happen at any time.
I have eight other children and I am wanting to do all I can to make memories for them.
 
Thank you for any help you can give me,
Marge
phone number”


I didn’t know if I’d hear back from them.  I couldn’t look beyond those first two pages on their website to find out more about the organization, and I didn’t know what to expect.  But experience has taught me that it didn’t hurt to ask.

I don’t know why I did it, but after emailing them, I emailed the local radio station that mostly focuses on stories of local interest.  I suggested they research the NILMDTS site and consider getting the word out so that more local photographers would consider getting on board.  I knew if I was a photographer I would do it, and I assumed there were others who would also.

After that, I made plans of calling a friend whose husband used to be a photographer.  I would call her to see if he would be willing to come to the hospital if a NILMDTS photographer was not an option.  Time was of the essence—I could lose Dekar at any time.  I wanted to be sure I got some excellent photos in some way, shape, or form.

Not more than four hours after sending the email to NILMDTS headquarters I got a call from a photographer with a sweet voice.  She introduces herself–her  name is Danielle Felton and she said the NILMDTS headquarters called to inquire if she would be willing to do the session.  She called me directly to let me know she’d be happy to.  I asked how far she’d be driving and she said it’s about two hours. I was so impressed at the quick reply and the willingness of Danielle to drive such a distance to do this for my family and me.

She also offered a maternity session.  That was an unexpected blessing.  She came over and was very comfortable with my house full of children.  I found out she came from a large family herself, so she wasn’t scared.  🙂

A few days after contacting the radio station both Danielle and I were asked if we would do a short interview on the air.  Both of us agreed.  I told them my story, why I would be using the service offered, and why I felt this organization needed exposure in our area.  Danielle was able to share her experiences and let them know that more photographers were needed.  (Edited to add, that photographers are STILL needed in our area and many others.)

Danielle and I kept in contact.  She knew that I could give birth at anytime to a still baby or that I could be holding a live baby after birth.  After I decided on a c-section, I told her the date, time, and that the staff knew she would be there.  I saw her photography work and I knew she was very capable of doing a lot–but I told her I really wanted memory pictures. The artistic stuff didn’t matter as much–I wanted pictures of each of the kids holding Dekar as well as family pictures. She honored my request, and threw in her creative work as well.

I felt a bond with Danielle. Maybe it’s because I was letting her “into” a very personal part of my life–and I have become a very private person. The day that Dekar was born I could see that Danielle was doing her best to respect the situation–and with eleven people in the room (my family), plus the nurse(s), she really did well to manuever around and take pictures and capture memories. I still can picture her moving around and asking me if it was okay to do this or that….Even though I was focusing on Dekar and my family, I was also aware of Danielle and that she was doing this out of complete selflessness. She was taking time from her own family to be with us. As a mother (and a human being), I appreciated that so much.

I also grew a bond with Christine Barrack, who put together the slideshow which you can view here. I felt she really put her heart into making it as beautiful as she could. The placement of the photos, the seamless transition of the music; everything in the show conveyed a sensitivity.

It was as if both of them were thinking, “If this were me, what would I want to see? How can I be the parents’ eyes and capture the moment/life to the best of my ability?”

So, that’s my story and my experience with the Now I Lay Me Down To Sleep Organization.

Danielle and Christine will forever take a special place in my heart and life.  This organization is what it is because of each individual photographer and volunteer–and if they only had Danielle and Christine to represent them, they could be proud.

The day I post this (09-27-08), Dekar would have been three months old. I am so thankful that I have beautiful photographs to look at and remember the life I held for only a short time.  The photos capture his uniqueness, his beauty, and the strength that he gave us for those eight hours on earth.  I am forever changed because I held a lifetime in my arms.

Thank you, Danielle, for giving of yourself and your time.  Thank you, Danielle’s husband and children, for letting your wife and mother go for the day to help capture lasting memories of a life that was too short.  Thank you for letting her work on presenting us with a wonderful picture cd and slideshow full of memories.

Thank you, Christine, for working with Danielle to produce a beautiful slideshow that brings tears to my
eyes and a smile on my face. 
 
Cheryl Haggard, extending a “thank you” doesn’t seem appropriate.  You and your husband lost your precious son, Maddux, and that is not something to be grateful for.  But using your experience as a catalyst to start Now I Lay Me Down To Sleep shows what a beautiful heart you have. 
 
Sandy Puc’, thank you for sharing Cheryl’s vision and giving of your time and talent to work with other photographers to ready them to do this precious work. Because of you and all of the other photographers and the volunteers who give of their time and talent, parents can heal and remember the life of thier child that was taken too soon.
 
Losing Dekar was the hardest experience of my life.  Although I left the hospital with empty arms, my heart was full, knowing that God had been with me through the whole thing.  In His graciousness and mercy, He extended His love to me through the giftedness of Danielle’s photography and the whole Now I Lay Me Down To Sleep organization.  For that, I will be eternally grateful.

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.

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 is in this NILMDTS presentation.  It’s babies born with Trisomy 13 or 18.  (He’s shown at just over a minute’s time…)

From the YouTube description:

This video was shown at the 2008 SOFT** Conference and is dedicated to all of the parents and families of babies born with Trisomy 13 and Trisomy 18.
**Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)

To learn more about Now I Lay Me Down to Sleep, please visit our website at: http://www.nowilaymedowntosleep.org and our support forum at: http://www.nowisleep.com.

To learn more about Trisomy, visit: http://www.trisomy.org/index.php

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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