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When I was pregnant I was active on a pregnancy board with other ladies due the same time as me.  I visit the board occassionally and keep up with some of them who have blogs.  

I see the pictures of their babies and how cute they are.   It doesn’t bother me to see the pictures, because I am truly happy that they have healthy little babies to hold and love.  I’m happy they got to take their babies home.  But at times it hits me that the pictures of Dekar that I have are the ONLY ones I will EVER have.  He will forever be that little infant…..it’s like part of my life is fragmented off because as my other children grow older, Dekar will always remain an infant.  It’s just weird.

Dekar would eight months, and I love that age.  They really start taking on more of their own attitude and personality.  They smile a lot.  They are a bit easier to care for because they can sit well on their own and entertain themselves.

A few days ago I was sitting on the couch with my son, Mel (4 yo).  I told him that we’d get to have ice cream soon for Dekar Day, and that Dekar would have been eight months old. 

“If Dekar were alive he would be driving you a little crazy, Mel,  because he’d be getting into all of  your toys.” 

“Yeah,”  said Mel, “But he could play with them!” 

“Yes, he could.  And I bet he’d try to chew on you— and drool, too!”  Mel’s eyes brightened up and he giggled after he thought about that for a while. 

“But he could play with my toys, and that would be nice!” 

Yes, it would.  But, Dekar isn’t here to play with toys, chew on his brother, or drool on his clothes.  I do notice that Mel’s eyes brighten up when we talk about Dekar.  Although I am not sure any of my kids understand the importance of Dekar Day, I do hope that it becomes so ingrained in them that even when they are off to college, get married, and have kids of their own, they will pause on the 27th of each month and eat some ice-cream in honor of their brother who is forever an infant.

Rachel holding Dekar with Mel looking on.

Rachel holding Dekar with Mel looking on.

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“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.

pictures-from-halis-camera-420

 

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.

 

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