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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
Congratulations to Sharon and family on the birth of Charlize Rose!
Sharon gave birth to a beautiful little baby girl with Trisomy 18 and hypoplastic left heart on July 29th. Today she is enjoying her 27th day with her!!! It simply makes me smile. I am so happy that Charlize is being surrounded by the love of her family and giving love in return–I pray she has 27 more, and 27 more, and 27 more, and ……………….
Sharon shared some of the most wonderful, touching pictures with me–I posted just a few. Isn’t Charlize gorgeous?
From an earlier email Sharon said, “She is in the most wonderful wrapping Marge, just like your Dekar.” I love that. What a perfect way to describe our babies–in a “wonderful wrapping.”
Enjoy your time together, Sharon, and thank you for sharing your message of hope.
The hospital provided a little memory foot impression box. It’s very pretty. The impression was made in a foam-like material and Dekar’s information was filled in on the other side. The box ties shut with a ribbon.
The photo doesn’t show the details very well, but here are the molds of each hand and one of his foot. The foot one ended up having an air bubble on the top and the toes didn’t turn out perfect, but it’s still better than nothing. The wrinkles show, the fingernails are detailed–it’s really nice to have these. I don’t remember his hands being so tiny. I do remember that he didn’t like it if I tried to move his fingers–they were clenched good and tight and he preferred to keep them that way.
I didn’t smooth out the rough spots or do anything else to them. I didn’t and still don’t want to take the chance of them breaking.
I got the kit at Michael’s, but I don’t see the kit on their online store. I purchased some recently (July 2009) so I know they still carry them. Here is another place that carries a kit.
The beautiful blue in the background is a prayer shawl a friend made for me recently.
There’s nothing else to say. I wish he was here to hold and cuddle and play with. I wish he was here, taking his siblings toys and throwing them around. I wish he was here, learning to walk and saying his first words….I wish he was here, smiling, with drool running down his face because of teething….I just wish he was here.
But he’s not and I’m sad. 
I have pictures to post from the Ended Beginnings service and want to share what we did for Dekar’s first heavenly birthday, but I’ve been extremely busy and unable to sit down long enough to gather my thoughts and write it all down. I don’t see it slowing down any time soon–but I do want to say a big thank you to those who remembered Dekar on what would have been his first birthday. It was very nice of you. I have a hard time remembering birthdays in general, so your attentiveness was not unnoticed. 
Your first birthday card--the card Jadon picked out just for you
Struggling to say hello
Getting your bath
Saying your last good-bye...
We ARE so glad you were born, Dekar. We miss you and love you.
Although I have eight other living children, Dekar’s absence was apparent to me.
We included him in on our Mother’s Day celebration by having ice cream.
Melchizedek and Isaiah both had Blue Moon. Can you tell?
Yesterday this blog registered over 10,000 hits. I’m not so sure that is something to celebrate, as I wish I didn’t have this blog/memory site in the first place—but, it has been a nice way to be able to share my little guy with friends and relatives.
However, most people don’t find this site because they are looking for my Dekar—a good portion are drawn to this site because of the Sample Infant Obituaries. Since I originally posted Dekar’s obituary, I don’t believe a day has gone by that somebody hasn’t stumbled on this site in search of a sample or template on how to write a baby/stillborn/infant obituary. I find that incredibly sad—-to know that every single day, somebody is suffering a loss of a baby.
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.
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.
that some people have too hard a time facing the fact that babies die. I guess they don’t want to look into the eyes of a mother who lost a baby too soon, because then they may have to actually face that reality. I guess it’s much easier to not say anything, look away, or to say a quick hello and move on.
I guess it’s easier to believe that these types of things happen to people we don’t know–and they would never have to deal with this painful reality face to face. It’s much more pleasant to think that it could never happen with thier own pregnancy or their own baby. Or their daughter, or sister. It only happens to the other people. It happens to the other people they don’t know and people who don’t live by them…..
Then once the “other person” IS somebody they know, or somebody who lives by them I guess they don’t know how to handle it.
It’s really understandable. I’ve never been in this position before either.
Before last spring, I’d never even thought I would hear such devastating news—that the child I was carrying would not live long, if he was born live at all. I handled it the only way I knew how: I cried. and cried. and cried.
Before that day I’ve never had to find the strength to just make it through each day of my pregnancy, not knowing if that kick I just felt would be the last one I’d ever feel from my son.
I’ve never had to pray for a miracle and plan for a funeral. I never had to wonder if my baby would be born live or still. I never had to talk to a funeral director or call a photographer to get ”final” and only pictures of my child.
I used to be the one who always felt blessed, knew that all would go well and that I’d have many sleepless nights ahead of me because of the diapers and crying……but now I would have sleepless nights coming to grips with the fact that Dekar was not with me and never would be again on this earth. My sleepless nights were only filled with silence or the sounds of my own crying.
There was no way to practice for the position I was all of a sudden placed in. There was no rule book to follow and no way to know how I would make it through each day. I didn’t know what I was suppose to do or how I was to act. So, I wrapped myself fully into the roll of being Dekar’s mother.
After all, that part didn’t change. I was still Dekar’s mother.
I was celebrating each movement, yet already grieving the loss that was already in the depth of my heart.
While the other pregnant ladies anticipated their baby showers and decorated their nursery, I was deciding between cremation or burial and picking out what would be Dekar’s first and final outfit.
Instead of arranging our house for another little person, I was praying that I’d be able to bring home Dekar, even for only one day.
I’ve never had a baby die in my arms before Dekar. I’ve never had to watch my children and husband cry for the little life that was lost before our eyes.
And I’ve never had to face people who say nothing about the loss of my son.
And this is one thing that I don’t know what to do with.
I have no idea.
All I know that I can do is bless God that these people have never had to do the things that I did last year. I hope they never will.
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.
“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”
I never heard this song before today. It fits in so perfectly with the memorial ornament I purchased.
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
“The measure of life, after all, is not its duration, but its donation.”
~~Corrie Ten Boom
Dekar had a full life. He gave his all to us and we gave our all to him. He gave us each an opportunity to put aside petty arguments that result in nothing, and focus on the importance of every moment we are given.
Today, November 27, 2008, is Thanksgiving and it is also Dekar Day. He would have been five months old. When Rachel and I went shopping for our Thanksgiving meal, we took extra time to pick out ice cream for our celebration of the life he gave us. We chose strawberry. I remember many times eating banana splits which included fresh strawberries.
I am so blessed that I got to see Dekar alive, even though it was only for a short while. I loved being able to hold him, kiss, smell, touch and talk to him. From Dekar’s first struggling breaths to his last, he gave his all to us. We were able to lavish him with love, and every moment was cherished.
I’ve shared a few pictures and the email I sent after his birth and the events that followed. I had written much of that while in the hospital the day after Dekar died. The quietness in the hospital room was so loud that is was screaming at me. It stinks to recover from a c-section, but at least you get to oogle at a beautiful baby. That day, June 28th, I woke up alone and ate breakfast with no baby to stare at in a bassinet. Cortney was home with the other kids, so the silence was deafening.
I am constantly aware of the fact that my baby isn’t here with me. I came home with empty arms and the burden of those empty arms is a heavy one.
Nobody can feel the load I carry any more than they can see the wind blow. But the pain I feel and the emptiness that has been left in my heart is real and I am always aware of it. I am also aware that I am not the person I once was, even though it may seem so from the outside.
To everybody else, it seems that life goes on. That is the hardest part for me. My arms are empty, but my hands are busy. Very busy. There are still the regular, daily needs that have to be attended to. Since my hands are busy it appears that life is continuing on as normal. But it’s not.
When Dekar took his last breath, he also took part of me with him. A person simply isn’t the same after they’ve held a lifetime in their arms. Life may go on, but it will never be the same.
Click on banner to visit the Official Site of Pregnancy and Infant Loss Rememberance Day
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.
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