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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.
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
babydekar.com 
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