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Dear Dekar,

Today you will be in Heaven for six years. I watched the video that the photographers at Now I Lay Me Down To Sleep provided and I cried.

A couple of days ago it really struck me how I am a different person than before having you in my life. Time and experiences do change people, but being pregnant with you and holding you in my arms while you took your last breath changed me forever. It didn’t really strike me until I contemplated the current goings-on in my life.

About a month and a half ago your big brother, Jadon (who was only six when you were born!), was diagnosed with Type 1 diabetes. That means for whatever reason his pancreas decided to stop working and Dad and I need to give him insulin shots so that he can stay alive. (Ask God about the pancreas and how it works—He made it and can explain it better than I can!) Just like with you, this was nothing we did or didn’t do. Trisomy 18 just happens.  Type 1 Diabetes just happens.  

Jadon felt and looked awful when we took him to the doctor. The thing that still strikes me as odd is when the doctor told me that Jadon had diabetes I had no sense of fear.

When we knew something was wrong with your development there was a lot of waiting and wondering. First we thought you were just small in your development, then we saw something was wrong with your heart. Then at the next appointment the ultrasound tech started listing off problems with your brain, your feet, your hands, your heart, your kidneys….I don’t think she was supposed to do that….Then the doctor came in making it all real. There was some sort of chromosome abnormality and he wanted to do a test to determine what it was. End result–you could die in utero or if born alive, you would have a very short time on earth. Tears came and didn’t stop for days. The doctor was gracious to have one of the quicker tests done so that we didn’t have to wait for the total final results. And then days (which felt like years) later he called saying you have Trisomy 18 and hypo plastic left heart syndrome. The tears kept coming. The pjs didn’t get changed for days.

I remember how it tore me up when your oldest brother, Aaron, was diagnosed with hirschprungs soon after he was born. He had to stay in the hospital, I couldn’t be with him overnight, he was in pain—it was just all around awful. Then he had to have a surgery to have a colostomy. I didn’t even know what a colostomy was and all of a sudden I had to do all the care for him having one! A year later he had a surgery that had a long healing process.

Did it ever enter my mind that he would then be diagnosed with Hepatoblastoma before he turned two years old? No! I breastfed, I fed him healthy foods, I stayed home with him and Hali—he wasn’t supposed to get cancer. But he did. He also survived and is thriving.
Not only did he survive, but we all did.

And here we are now. Here I am now. I am not the same—there is no way I could be.

The common theme that runs in my mind is “death”. Aaron could have died a few times over. You did die. If things had gone wrong with Jadon, he could have died. One thing I learned when Aaron had cancer: We are all terminal. There are no promises how long we get to live. Because I knew your life would be short on earth I purposed it in my heart and mind to make your life worth living—and I didn’t even know if you would be born alive. You were loved, kissed and smothered with all kinds of affection. The hardest part for me to wrap my brain around was holding my dead child—how do I do that? I still don’t know how I managed, but I remember looking at you and thinking how you looked like royalty. Such peace and tranquility on your face.  That memory is so beautiful, when I had feared it would be one of the ugliest.

Now, in the midst of all of this, instead of dwelling on the death I think of the enriched life I can now experience. 

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The above was and still is my mantra. I never knew how strong I was until being strong was the ONLY choice I had.

Philippians 4:13 says “I can do all things through Christ who strengthens me.” And He did strengthen me—the reality is, though, I still had and have to make the choice to be strengthened by Him AND to actually DO the ALL THINGS that He is calling me to do. I didn’t know I had it in me, Dekar. I knew in my heart what I felt I had to do and wanted to do—but I didn’t know how to do it. And I did it. But honestly, it amazed me that things fell in place. God gave me a gift when He gave me you. Not just the gift of YOU, Dekar, but He has allowed me to see strength in myself that I didn’t know I had. Even when things didn’t work out as I had hoped, I had the strength and grace to be able to look beyond the disappointment and pain and have compassion and forgiveness.

And now we come back to Jadon’s diagnosis. “If I can go through a child with cancer and hold Dekar as he takes his last breath, I can do this.” That is why I didn’t experience fear. I have no doubt in my mind that I can grow with Jadon and help him to learn to manage his diabetes. I know that I have the strength for this next race because I have been trained by The Best. I know that is the ONLY choice I have because Jadon’s life depends on it. I know there will be hard times and scary times.  But I can do this.  I already have.

They say to never judge a person because you don’t know what battle they are fighting—God is the only One who has truly known the internal battles I have fought all my life. God has lifted my face to His through some of the worst experiences a mother could ever imagine. God has used these hard experiences in my life for my good and for His glory.

So today, Dekar, although I cry, I also rejoice. I rejoice in the goodness of what the Lord has given me through you. I couldn’t save your life, but in a way, I believe you helped to save mine.

Happy Heavenly Birthday, Dekar. We are having Turtle pie, French silk pie, and pecan pie with whipped cream –with sprinkles–in your memory and honor. Thank you for all you have given me. I love you and I miss you.

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)

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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.

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This does not include all the pages and links posted–And it’s also not necessarily in order. (If you come across any dead links I would really appreciate knowing about them.  Please use “contact” form.  Thanks!)

Dekar’s Obituary and other SAMPLE INFANT OBITUARIES 

Dekar gave us a lifetime of Love during his short time on earthwhat I sent out to inform people of Dekar’s birth and passing–it’s his story, in a nutshell.

Babies with Trisomy 13 or 18 (Dekar is included)YouTube video made by NILMDTS with images of T13/T18 babies

Slideshow of our time with Dekar, courtesy of Now I Lay Me Down to Sleepthe slideshow made for us by NILMDTS.  Danielle Felton took the pictures and Christine Barrack made the slideshow. 

“Dekar Day”–the 27th of every monthhow we remember Dekar on a monthly basis

Praying for a Miracle; Planning for a funeralhow I continued on after Dekar’s diagnosis and the plans I made for his arrival and passing.  This is not what a pregnancy is suppose to “look” like.   I also talk about regrets I have, the grace I gave myself,  and what I wish I could do differently.

My Experience with NILMDTSI had never heard of Now I Lay Me Down To Sleep before-so I wrote about my experience with them so others would understand them a bit more from a parent’s perspective.

The Heavy Burden of Empty Armswhat others don’t see when they look at me….

A Full LifeDekar had one!

Dekar’s Memorial Ornament, 2008 and 2009

HopeLink to Steven Curtis Chapman’s song WITH HOPE, along with lyrics.  It’s a beautiful song that I discovered soon after finding Dekar’s first memorial ornament.

A nurse’s thoughts and perspective on the birth of Dekar–my main nurse graciously shared her thoughts and gave me permission to share them.

Forever an infantas my other children grow, Dekar remains forever an infant

Dekar’s Name in the Sandone lady’s mission to help remember other babies who died too soon.

My Mom, A Pair of Shoes, and other poemsI just like these poems–I am adding as I find them.  Updated 11/06/11

I guess…some people have never said anything about the passing of my son…..

Dekar Day, another loss, faithful friends, and a random act of kindnessthe title just about covers it

Bittersweet milestone

First Mother’s Day without Dekar

The babies that were meant just for me

Happy Birthday, DekarDekar’s first birthday a small pictorial tribute to his short life

I Miss Dekar

Dekar’s Foot Impression and 3d Foot and Hand molds and another memory item

Strength–Coping with the very end result of the “Incompatible With Life” diagnosisthe hardest part was not knowing if I could handle holding my deceased infant son. 

Smiling for SharonSharon’s daughter, Charlize, was diagnosed the same as Dekar–hypoplastic heart and Trisomy 18.  Charlize blessed her family with 58 days!  She is a beautiful little girl and I’m so glad Sharon shared her life with me.

The Mourning Boothnot sure what to say or do for somebody who is mourning?  Watch this. 

A Pleasant Reminderone small effort is forever ingrained in my memory as one of the kindest actions I have ever experienced in my life.

Still Making Memoriesa memorial snowglobe created by a talented photographer/friend.

Dekar’s 22nd month in heaven–a letter to Dekar

Final Diagnosis–Trisomy 18the email I sent to family and friends to relate the news of our baby’s Trisomy 18/hypoplastic left heart diagnosis 

I remember sitting in the hospital the day after Dekar was born.  I stared out the window while eating my breakfast. 

I wondered why Dekar had to die when so many babies were not wanted.  Why Dekar, when so many were not loved and cared for by their mothers.  As soon as the question entered my mind, a gentle voice said, “That is why YOU were chosen to be Dekar’s mother.  Because despite his diagnosis, I knew you would still give him a chance at life.”  Then I thought of what could have happened with Dekar, specifically,  if he had been one of those other women’s child—-and it stabbed me in the heart but then I was flooded with peace.  Even though I felt the loss deeply, that gentle voice answered the question of “Why my baby?”  Because Dekar was meant specifically for me.

Dekar was not just any baby–he was MY baby.  God gave him to me, knowing I would be the best mother I could for him.  No matter the outcome he would still be my son.  Would I have really wanted him to be somebody else’s–knowing that they would abuse, abort, or not care for  him?  No. 

I would never make light of the questions people ask:  “Why me, why my baby….why, when I wanted a baby so bad?”  If it were up to me NO babies would die or be hurt in any way.  But I’m not in control of any of that.   My recent miscarriage made no sense to me, and still doesn’t.  The first thing I did was throw up my questions to God: What was He thinking?  How could He allow this to happen?  Why?   I lost Dekar, why did you allow me to lose another one?

Even though I am not carrying that baby any longer and will never hold that baby in my arms, it doesn’t change that fact that I am still that baby’s mother.  I still held a life inside of me that was precious.   I still mothered that baby the best I knew how, just as I did with Dekar.  

I can be sad about the outcome, but I can also thank God He gave me a baby to love–a baby meant for me, and nobody else.

From April 27th, 2009

Today Dekar would have been 10 months old.  On my FaceBook account I simply typed out “Ice Cream”.  I knew what it meant, and it didn’t matter if anybody else did.

This time “Dekar Day” is hitting me a bit harder because I am also dealing with the loss of another baby. 

On April 8 I went into my first prenatal appt., very excited about the first ultrasound that I would be having with my new pregnancy. The due date would have been in mid-November.  As soon as Dr. Jeakle started the ultrasound, I knew something was not right.  He was humming—when my husband hums, I know that something is up—and the volume on the machine was not turned up so that I could hear the heartbeat.  I knew it was taking too long for him to find what he was looking for.  Long story short, my doctor saw the little baby just fine, but the heartbeat was not detected.   I was numb.  It was not what I expected at all.  Add to the frustration is the fact that the little baby measured perfectly—according to my date I would have been just over eight weeks along, and that’s how big the baby measured.  The baby’s heart may have stopped beating seconds before the ultrasound.

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I left that appt. not understanding anything any more.  I just looked up at God and threw Him some question marks. 

I had hoped to let the miscarriage happen naturally, but found the waiting to be harder than I anticipated.  It reminded me of the time I was waiting on Dekar to be born.  Even though I knew Dekar may not be born live, I had that tinge of hope to hang onto.  With this—-there was nothing.  I was just waiting for the inevitable.  Two weeks later, after no signs of miscarrying,  I requested another u/s and went home with the confirmed bad news–but still desiring to miscarry naturally.

I couldn’t take it.  Once I got home everything hit me hard again.  I called the doctor’s office and left the message that I am emotionally spent and didn’t know what I wanted.  The doctor called me back and was again very compassionate–he didn’t push me into anything and he let me make my own decisions through the whole process.  We scheduled a d&c, which was performed on Friday, April 24th.  I was not happy about it, but I felt it was better for me and my family to get it done.

Today I received a call from the hospital to see how I was feeling after the surgery on Friday.  My pain is keeping me up at night, so I did a follow-up directly with Amy, Dr. Jeakle’s nurse.   Pain meds would be ordered, and after talking “business” I asked if she had a Girl Scout, since I wanted to buy some cookies and didn’t know any who were taking orders.  Found out that ordering was over, but Dr. Jeakle’s wife orders extra.  Good.  At least I can get some Thin Mints and Samoas.

While in town to pick up the pain meds and ice cream treats for Dekar Day, I got a call on my cell–it was Amy, telling me the cookies were in.  That was quick, and such perfect timing!  I asked how much they would be, and she said, “Nothing.  I think you could use some G.S. cookies so we threw a bag together for you.” 

Indeed, she and some others at the office (I am not sure who) put together a bag for me—four boxes of Girl Scout cookies, other candy treats, and a candle.  It was a random act of kindness that meant more to me than they will ever understand.   They went beyond their “work” mode and treated me with a measure of warmth and friendship that I won’t forget.  It was just. so. nice. 

After I got home I plopped in front of the computer with a box of cookies…..(and those who know me know I am not sappy)—-I got a lump in my throat when I saw a bunch of my friends let me know that they had eaten ice cream, or planned on it,  in memory of Dekar.  Through facebook and email, I was told they remembered…..

Tonight as I eat my ice-cream with my husband, I expect it to have a whole different feel to it.  I will not only be mourning the loss of Dekar but also mourning the loss of a baby I never met, but desperately wanted to.   Maybe they are eating ice-cream together in heaven?…..

Before I go to bed I’ll look at my children and thank God for the gifts that He has given me.    And I will be sending up a special thank you to Him for putting people in my life who will show a random act of kindness and for all of the others that remind me they care—especially at a time when I needed it the most.

“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”

“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.

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

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

MY CARE:

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

DEKAR’S CARE:

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

IF HE IS ABLE TO COME HOME:

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

IF DEKAR DIES:

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

OTHER STUFF:

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

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

THINGS I WISH I COULD GO BACK AND CHANGE:

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

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

Shortly after coming home from the hospital I told the family that the 27th of every month will be “Ice Cream for Dekar” day.   This is a way that we can keep Dekar’s memory alive, and it’s a fun thing to do.  I would get hassled by my family that I would go out for ice cream so much while pregnant—but I loved feeling Dekar kick and ice cream seemed to do it for him!  I don’t know if it was the sugar or the coolness, but he reacted. Since we had gotten his diagnosis of Trisomy 18 and hypoplastic left heart, those kicks became even more precious to me.   I looked forward to each outing and the movements that would soon follow.

So, July 27th we all went out for our first “Dekar Day”.  My oldest son said, while licking ice cream, “I’m sure glad that Dekar didn’t like meatloaf.  I mean, what would be the fun of having meatloaf every month.”  🙂

Eating the ice cream brings back fond memories for me.  It also conveys to the kids who may not otherwise remember Dekar that their little brother is worth remembering and celebrating.

_________________

February 27, 2009

Today Dekar would have been eight months old. 

Sigh.

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I have rootbeer and ice-cream ready to go for tomorrow.  (March 26, 2009)

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On Dekar’s first birthday we all had ice cream cones covered with sprinkles.  What was so funny to me was hearing from several  friends that on Dekar’s birthday they ALSO had ice cream with sprinkles!   I’ll never look at ice-cream with sprinkles the same!

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