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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.
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”
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.
—————————
I have rootbeer and ice-cream ready to go for tomorrow. (March 26, 2009)
_________________
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!
Another version of the slideshow is here. (You may need to download and/or accept ActiveX.) It is the original and much cleaner/sharper looking.
Thank you Danielle Felton and Christine Barrack for giving of your time and talent. Your sensitivity, kindness, and compassion will never be forgotten.
Dekar is in this NILMDTS presentation. It’s babies born with Trisomy 13 or 18. (He’s shown at just over a minute’s time…)
From the YouTube description:
This video was shown at the 2008 SOFT** Conference and is dedicated to all of the parents and families of babies born with Trisomy 13 and Trisomy 18.
**Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
To learn more about Now I Lay Me Down to Sleep, please visit our website at: http://www.nowilaymedowntosleep.org and our support forum at: http://www.nowisleep.com.
To learn more about Trisomy, visit: http://www.trisomy.org/index.php
Dekar arrived via c-section at 10:46 a.m., June 27, 2008. He was diagnosed with Trisomy 18 and hypo-plastic left heart syndrome and not expected to live long. He was not born kicking and screaming. In fact he was quite quiet with poor color. Dr. Mann checked his heart rate and it was approximately 100 bpm. His heart rate kept decreasing and he wasn’t making good breathing attempts so he was quickly handed to Cortney. (We had stated in the birth plan that if his condition was deteriorating that we would like to be the ones to hold him when we was taking his last breaths.)
When I first saw Dekar, it was clear that he was not doing well. His color was grayish blue. He was silent, but looked like he wanted to cry, or do something. I looked at Cortney and I believed at that time that Dekar would not make it out of the room alive to meet his siblings. I am not sure all that happened in the surgical room. One of my initial concerns going into the c-section was that I would not be able to hold it together during the surgery. Although I did get a bit emotional, I still was in control and awake, and that’s the best I could hope for. I did become quite light headed and woozy though. The time was passing quickly, but so slowly. Dekar just didn’t look like he had much life in him at all and it tore me apart. But I tried to soak up as much time with Dekar that I could.
Cortney held him most of the time as I was strapped, with one arm free and not at a good angle. We both cried and prayed. Dr. Mann checked his heart rate again and it was holding at about 60–still very low.
We both talked to him and I saw one of his little eyes open and he started making some sounds. It was like he wanted to breathe, but couldn’t. I requested the nurse to suction him more, as I could see he had drainage around his nose and he most likely had more in there that he couldn’t get out.
After he suctioned him more they also gave him extra oxygen. He made more small noises, but never a big cry. He continued to make his little “complaining” noises. His heart rate increased to about 150 and his color got a little better.
At this point, Dekar was now more stable and I was ready to go to a regular room. Cortney carried Dekar. At the end of the hall we saw that Hali arrived with all of the kids and they were entering their waiting room.
During the next few hours Dekar continued to hold his own. He opened his eyes, showed his unique character through facial expressions and even smiled a little.
He still hadn’t cried hard; just made little crying noises. He was passed around from person to person–meeting each of his siblings and being lavished with love and kisses, told how cute he was. He opened his eyes, a couple times very wide. He most often had a “popeye” look with his right eye opened and left eye shut.
I had desired to give Dekar his bath, but I knew that even with all the pain control I wouldn’t be able to do it. I requested our nurse to bathe him, as he was really covered thickly in vernix. I smelled the freshness of new birth one last time and handed him to Kathy for his bath. Cortney gave her the outfit I had picked out for him. She asked if I wanted her to do the bath by me, and I declined because I felt so weak. She asked if any of the kids or Cortney wanted to participate. I think Rachel and Hali both watched for a while.
At this time he was also weighed and measured. He was 4 lbs 14 oz and 18″ long–this was after a couple good poops and pees. I thought he was heavier; he really did look bigger to me. Head, 13″ and chest 11″.
Bathing him actually improved his condition a bit. His color was better and he got bundled up to retain more heat. His cheeks even got some pink color and almost looked like a healthy newborn.
After a couple hours the kids went home, with plans to return later. The hospital was very accommodating to us and had a huge snack spread, and offered pizza for later on. They planned on coming by around 5 pm.
When the kids left Cortney and I settled down to nap. I snuggled up with Dekar, knowing he might not be “with” us after the rest. But I cherished every moment I was able to hold him. I didn’t sleep. I was so exhausted, but I think I just wanted to be awake and aware for Dekar. I heard him make his little noises and would soak it all in. Cortney said I was snoring, so if I did rest, I honestly wasn’t aware of it.
The kids showed up again around 5 pm. They all took turns eating pizza and holding Dekar again. Dekar again was lavished in love by his eight siblings. At times he looked very alert and had his eyes wide open. Hali captured a beautiful picture of him smiling which we are enclosing with this letter. Dekar was talked to, rocked, swayed, and loved up.
Cortney brought him to me with a concerned look. Dekar was not as responsive–his eyes were more fixed and glazed and he wasn’t making his crying noises. I told him to have the nurse look at him. The heart rate was much lower–around 50 bpm, down from the 130-150 that he had been holding.
I had Cortney go get all the kids so they could all say good-bye. We told them that his heart was not going to last much longer and he would be gone soon. We all cried.
As I was holding him I knew that he was now looking into the eyes of Jesus and no longer here with us. The nurse checked him and asked to take him to his bassinet to listen to him there. She looked at us and said, “I don’t hear a heart tone.” (7:10 p.m.)
In the anguish of his passing I also remember feeling very blessed that we were all able to be with Dekar when he passed on. If I could have planned it all, it coudn’t have been more perfect for a sad situation. All of us were able to welcome him into the world and each of us were able to say good-bye. We were able to share our love with him, and he shared his love with us. God timed everything so perfectly. He was not in pain, and passed peacefully.
Dekar was so beautiful and precious.
After Dekar’s initial diagnosis Dr. Jeakle (my OB) had shared a story of when he worked downstate and a baby that was delivered had Trisomy 18. The colleague he worked with looked at the parents and said, “You have a couple hours to give your baby a lifetime of love.” I thought that was so beautiful, and so fitting for our situation. I held on to that, knowing our case was similar. On the bottom of my emails it has read, “We have a short time on earth to give Dekar a lifetime of love.” Now that all is said and done, it was Dekar who gave each of us a lifetime of love during his short time on earth.
Thank you, Dekar, for sharing all of your love with us. You will always be deeply loved and deeply missed.
“And whoever receives and accepts and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me.”
~~Matthew 18:5~~ (Amplified Bible)
Dekar’s Now I Lay Me Down To Sleep Video
babydekar.com 
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