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I was so tired. After hearing Dekar’s diagnosis of Trisomy 18 and hypoplastic left heart syndrome my life became filled with so much uncertainty and the grieving began. There were no promises I would ever see him with his eyes open. So after the c-section and meeting my little guy I didn’t want to sleep at all. I wanted to take in every single moment. After only a couple of hours I was exhausted, but happy:
I am soaking in every moment that Dekar is alive. I watched the kids hold him and kiss him and relished every moment. This picture reminds me of how hard it was to keep my eyes open and the feeling of pure exhaustion.
And I know my husband felt the same:
- Here is my husband “resting while awake”. Isaiah kept him on his toes.
Very soon after those pictures were taken–the ones showing how tired we were–another picture was taken. I was holding Dekar and this happened:
- Dekar smiled!
I remember that moment. He looked me straight in the eyes and smiled–and it was such a real smile! It literally took my by surprise and pierced my soul with joy!
It wasn’t long after the smile that it became obvious he was leaving us. His eyes started glossing over and his heart rate continuously decreased. We all held him one more time and said good-bye.
Later on I realized even more what a gift his smile was–and how much he said to me in that fleeting moment! “I love you, Mom, and I’m so glad I got to see your face and feel your kisses. I love Daddy and all my brothers and sisters, too. It was so fun being held and loved by everybody. But I’m tired and I can’t do this much longer. I have to go soon. I know you will be sad, but I’ll see you again…. Mom–Thank you for giving me life. It has been a good one. I know I am loved and always will be. So are you.”
He said it all in that one smile. And what a blessing it was that Hali was right there and captured the moment.
It took almost two years, but I finally found the perfect urn for Dekar. This was purchased through Perfect Memorials
Front with engraved writing.
Top, where a large candle can be placed
Inside where the cremains (or other momentos) can go. Top can be sealed permanently, if desired.
back
When given the diagnosis of Trisomy 18, we were told Dekar only had a 50/50 chance of making it to a live birth, and few babies who survive make it to their first year.
‘Miracle baby’ celebrates first year of beating odds
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| —A happy birthday for Joey—Bruce and Lisa Pagac with their “miracle baby,” daughter Joey. (Staff photo/MATT AIKEN) |
By Matt Aiken
Published:
Wednesday, June 23, 2010 10:40 AM EDT (used with permission)
Joey Pagac’s first birthday is much more than a milestone.
To her parents, Bruce and Lisa, it’s a miracle.
“I brought her home from the hospital expecting that I’d only have maybe a few more days with her,” says Lisa. “And here we are.”
Where they are is the maternity ward of Chestatee Regional Hospital, where little Joey is wearing a tiny birthday hat as she’s passed back and forth between adoring nurses and cooing doctors.
It was a little more than a year ago that Joey beat the odds by emerging into the world despite her diagnosis of Trisomy 18.
“Trisomy 18 children generally have a whole host of issues,” said Lisa. These issues can range from holes in the heart to non-functional kidneys. The disease is so severe that approximately 95 percent of babies that are diagnosed with it don’t make it through delivery. Others rarely live more than a few hours after birth.
Naturally, when the young Murrayville mother found out her child had the vicious disease, she was crushed.
After trying for eight years to conceive, Lisa and Bruce had turned to in vitro fertilization and watched Joey develop from an egg. So when the results of an early test came back, Lisa felt as though she already had a daughter.
“I had seen her look like an egg, then I saw her look like a frog, and then I saw her look like a porpoise,” says Lisa. “I mean, I watched her stages of development, and I was already attached. I couldn’t bear the thought of losing her. And I wasn’t going to make the decision to end her life. I would leave it up to God. And I’m glad that I did.”
Chestatee nurse Ellen Wren says the gutsy move of Lisa and Bruce is to be admired.
“I think what was so amazing was she was given a choice,” said Wren.
Joey’s pediatrician Dr. Stephanie Corn agrees.
“Their plan was ‘I want to hold this baby for 30 seconds, for 60 seconds, maybe a day, maybe two days,’” she says. “They lived in the moment.”
Joey arrived two weeks late. And the delivery process was brutal, says Lisa. She credits Dr. Robert Brown for getting her child through it.
“We almost lost her twice,” she says. “… But she came out crying. She didn’t require anything special.”
Normally Trisomy 18 babies need breathing and feeding tubes to live. Joey requires nothing like this. Instead she has spent the past year growing and developing with very few complications.
And, in turn, Lisa, Bruce and Joey have grown into a family.
“I’m just happy,” says Bruce.
Joey is too, adds Lisa.
“She’s really a very happy baby,” she says. “I’m so lucky. She’s so good natured.”
After returning home from the hospital, Lisa says she learned that she wasn’t alone in her plight when she met up with other parents of Trisomy 18 children on Facebook.
“After connecting with a bunch of people I found out, ‘Gosh, I’m not the only one.’ There’s so many other people out there,” she says.
In turn, Lisa says she hopes she can provide comfort to any parents-to-be who find themselves in a similar situation.
“It’s an individual decision, and I would never criticize somebody over choosing the opposite of what I chose,” she says. “But I would hate for someone to choose that path, thinking there was no hope.”
As she says this, proof of this hope is still wearing a small pink birthday hat and making the rounds among a beaming hospital staff.
“She’s a year old,” says a smiling Lisa. “A year and a day. And tomorrow will be a year and two days.”
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Charlize lived for 58 beautiful days!
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Faces of Trisomy are portraits by Jude Wolpert taken at SOFT conference in Roanoke, Virginia July 2009. The purpose of awareness is to encourage others to see our children as just what they are, kids and young adults, and not as their diagnosis. Receiving a diagnosis of Trisomy is hard enough for any parent. Today with medical advances, early intervention, therapies and inclusion in education we can make others aware of the possibilities for our children given the chance.
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Dekar gave us a lifetime of love–he lived for just over eight hours
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You can find other Trisomy 18 babies on YouTube.
Do you have a Trisomy 18 story of hope to share? Please send me your story through the contact link at the top of the page.
I was going through pictures today and thought these two were sweet–my husband and I (and one of our little guys) walking down the hallway the day after Dekar passed on. My oldest daughter took them.
Sometimes I wonder, Dekar….Does anybody else think of you every single day, the way I think of you every single day?
Sometimes I remember you with a smile, sometimes with a tear. Sometimes I just look at your picture and I wonder….
What is it like to be in heaven? Do you see me? Do you see your brothers and sisters and your dad? Do you have ice cream with us on “Dekar Day”? I like to think so, but I don’t know. It’s a thing we do on Earth… So, I just sit and wonder…I like to think that you bring out ice cream and share it with all the other babies who left their moms and dads too soon. I say “too soon” because of me–not because of you. I feel the void, the absence of your presence–the awareness of the life that was so short, yet impacted me so greatly.
I really don’t expect anybody else to remember the way I do. I am your mother, and from the moment I got the news of your diagnosis I grieved the loss of you, my son. Is it possible to have a life selfishly centered around another person? Because if it is, I’m guilty–my moments, seconds, minutes, hours, days and weeks became “all about you”. I wanted every moment to count.
I was the one planning for your arrival–knowing full well it was to say “good-bye”. You were with me–you were the REASON for every moment of my planning, my grieving, and my tears. You were the reason for the ice-cream that was eaten all too often….When I saw an outfit hanging at Target, I knew it was meant for you. Even if you would only wear it once, I knew it was still meant for you.
I had the privilege of the all-encompassing “connection”….feeling you kick and move. Even when your brothers and sisters felt you move from the outside, it still wasn’t the deep, full movements that I felt–the squirm that radiated through my whole being. When I would feel the jabs I would wonder, “Is this the last time I’ll feel him move?”….. I’m thankful the movements continued. Did you know, Dekar, that I’m not a big ice-cream freak, but when I discovered that YOU seemed to enjoy it, I ate it as often as I could? Did you know that you helped make me into a quite “full-figured” woman? 😉 It’s okay with me–every extra ounce of weight I gained because of eating too much ice-cream was worth it.
I’m thankful that you shared a day with us. But on days like today I wish I could see you, feel you, and kiss you. I wish you were here to eat ice cream WITH us, instead of us having ice-cream in memory of you…
I know God’s timing is perfect and I know you are in Heaven–in perfect peace and surrounded by only love. I wouldn’t want to take that from you…but I do wonder what it is like and I wish I could see you there. I think I might just have a Brownie Earthquake and think about it–Brownie Earthquakes made you kick and that made me smile….and tonight I need to remember that feeling. So after having ice cream with the family, I will go off alone and indulge and wonder. It’s what I need to do today.
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Our new pup Jazzie enjoyed her first Dekar Day ice-cream cone.
Brownie Earthquake--worth every calorie.
Later….
I don’t usually take pictures of ice-cream, but it was worthy of being remembered–as silly as that may sound, and even I think it is silly to take a picture of ice-cream. I want to remember the ice-cream mostly because I remembered you so deeply that day. Dekar, I had watched your videos and looked at your pictures as much as time allowed on what would have been your 22nd month on earth…but it wasn’t your 22nd month on earth. It was your 22nd month in heaven. As much as I love the fact that you are in heaven and that I will see you someday, I equally hated that you are in heaven instead of with me—I wanted to be with you NOW. The ever shifting emotions connected with grief continue to bewilder me. How can I go from smiling at your picture to breaking down in tears that don’t stop….how can I appreciate the time I spent with you and then be sad that I didn’t do “more” with the time that I did have? How can I hate that I went through this yet would never give up the experience for anything in the world?
My relationships have changed, my views have changed. Carrying you and losing you has forever transformed me to my very core. I am waiting for the time when I can be at total peace with this “new me”. Some days I think I am there, but then I learn of a new loss that I didn’t realize I suffered…a changed or lost relationship, a lost dream. This was one of those days that I evaluated and reevaluated. I looked at your face and little body and wondered what else will my eyes be opened to and my heart be transformed by? It’s like a constant waxing and waning. Some, I think, have the notion that the death of a baby is something that will be forgotten and only remembered on occasion. They have no way of understanding that it is something that is right there all the time.
When I ate the Brownie Earthquake that evening, I ended the day with a smile. I remembered your life. I thought of your little sounds and the smile you gave us right before you passed on. You only knew love and you only gave love. And your life keeps on giving–I will never be the same.
There are some pleasant memories from the day we welcomed Dekar into the world and tonight I am happy that I get to share one of them.
The day after Dekar’s birth and passing I watched the video captured in the delivery room. Of course I was very absorbed with Dekar that day, and didn’t process all of the other things going on. But one thing that caught my attention in the video was the kindness shown by the anesthesiologist, Mike. He made me feel at ease from the moment I met him. I noticed when I would ask him questions his response would always be friendly, calming and kind.
During the c-section I was in a position with one arm somewhat strapped down with the blood pressure cup, and the other arm was free. My husband was trying to hold Dekar in my view , but I can’t really see him too well because Dekar’s swaddling blanket was in the way. With one arm bent weird and the other strapped down, I couldn’t do too much about it and I didn’t even think to ask Cortney to move the blanket. Mike apparently notices this, and smooths out the blanket so I can see Dekar’s face better. I didn’t notice this at the time, and I’m not sure that Mike was even aware of what he did—but while watching it afterward it really struck me as a kind and compassionate thing to do. He was doing his job, which was apparent in the video, but he was also simply showing human kindness during a hard situation. That was no small thing.
After some time had passed after Dekar’s death I sent out letters telling Dekar’s story and wrote personal thank yous to those who touched me in a special way that day. One of them was to Mike, and I mentioned how I appreciated his display of kindness in the operating room. Adjusting a blanket may seem a like a small thing, but when you don’t know how many moments you will have to see your son’s face, every moment counts.
Fast forward to this last week. I was setting up a booth at a Mom-to-Mom sale and a homeschooling father comes up and says hello. I recognized him from a field trip we had recently attended. Something about him seemed familiar, but I couldn’t place where I saw him before. When he reintroduced himself as the anesthesiologist from the day Dekar was born, I can’t express in words how this made me feel. I didn’t recognize him without the scrubs on–but this was Mike! He hadn’t recognized me either, but after talking to his wife he made the connection that I am Dekar’s mom.
During a hard and sad situation, there were some glimmering lights, and Mike was one of them. To see him again in a normal everyday situation, and learning that we have something in common (homeschooling) made me smile even more.
It made me realize once again that it isn’t always the “big” things that matter. All Mike did was adjust a blanket. But that one small effort is forever ingrained in my memory as one of the kindest actions I have ever experienced in my life.
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.
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“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.
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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.
I did not die young.
I lived my span of life,
Within your body,
And within your love.
There are many
Who have lived long lives,
And who have not been loved as me.
If you would honor me,
Then speak my name,
And number me among your family.
If you would honor me.
Than strive to live in love,
For in that love, I live.
Never ever doubt,
That we will meet again.
Until that happy day,
I will grow with God
And wait for you.
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MY MOM
My Mom is a survivor, or so I’ve heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn’t know I’m with her to help her understand.
But like the sands on the beach that never wash away…
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others…a smile of disguise.
But through Heaven’s door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom…through Heaven’s open door.
I try to tell her that angels protect me forever more.
But I know that doesn’t help her or ease the burden she bears.
So if you get a chance, go visit her…And show her that you care.
For no matter what she says…no matter what she feels.
My surviving mom has a broken heart that time won’t ever heal.
~~Author Unknown~~
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“A Pair of Shoes”
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
~~Author unknown~~
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Please Don’t Tell Them You Never Got to Know Me
It is I whose kicks you will always remember,
I who gave you heartburn that a dragon would envy.
I who couldn’t seem to tell time and got your days and nights mixed up.
It is I who acknowledged your craving for peach ice cream by knocking the cold bowl off your belly.
I who went shopping and helped you pick out the “perfect” teddy bear for me.
I who liked to be cradled in your belly and rocked off to dreamy slumber by the fire.
It is I who never had a doubt about your love,
It is I who was able to put a lifetime of joy into an instant.
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Cuddled in Heaven
Author: Charlotte Collins
We had so little time to share,
Too soon, I had to leave.
I know how much you love me,
I know how much you grieve.
I know how sharp your pain is,
I feel the aching in your hearts.
My life so quickly ended
Before it barely had a start.
I remember how you held me,
And kissed my face and hands,
You cuddled me so gently;
But, God had other plans.
I was your perfect angel,
From God you knew I came,
Suddenly He called me home again,
And now God holds my hand.
I know you’ll always miss me,
I understand your pain is hard to bear.
Just remember that I’m in heaven
And we’ll see each other there.
So smile when you think of me
and wipe away all of your tears
I’m cuddled now in heaven
By our family members here.
I’m waiting here in heaven,
And on the day we meet again.
I’ll be the first to smile and greet you,
When God calls you home to Him.
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Ask My Mom How She Is
My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She’ll tell a whole lot more.
Ask my Mom how she is
And because she can’t explain,
She will tell a little lie
because she can’t describe the pain.
Ask my Mom how she is,
She’ll say”I’m alright.”
If that’s the truth, then tell me,
why does she cry each night ?
Ask my Mom how she is
She seems to cope so well,
She didn’t have a choice you see,
Nor the strength to yell.
Ask my Mom how she is,
“I’m fine, I’m well, I’m coping.”
For God’s sake Mom, just tell the truth,
Just say your heart is broken
She’ll love me all her life
I loved her all of mine.
But if you ask her how she is,
She’ll lie and say she’s fine.
I am here in Heaven
I cannot hug from here.
If she lies to you don’t listen
Hug her and hold her near.
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I Hear Each Tear Fall On Her Face
My mom doesn’t know
I’m watching her
But I’m watching her just the same
and I hear each tear fall on her face
at the very mention of my name.
She says it sounds like
music to her ears
and can be heard over a crowd
Oh, I hear each tear fall on her face
when my name is said aloud.
I watch her stumble through each day
as she wishes the day would end
and I hear each tear fall on her face
as she talks of me with her friends.
But there are few
who truly understand
oh this I’ve heard her proclaim
and I hear each tear fall on her face
Will my mom ever be the same?
I know her smiles light up the sky
but I don’t see that smile today
oh but I hear each tear
fall on her face
Her blue skies have turned to gray.
Oh I send to her my warmest hug
with the rays of morning sun
then, I won’t hear a tear on her face
for I shall erase them one by one.
Yes, my mom doesn’t know I’m watching her
but I’m watching just the same
and if I hear a tear fall on her face
I’ll softly whisper her name.
Auther: Kaye Des’Ormeaux
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.
“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.
babydekar.com 
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