A Last Post

• As always, I turn to the written word to find solace, wisdom, and a sense of being understood.  During this time, I have had more of a need to do so.  Your words, through cards, emails, comments on the blog, text messages, have comforted me more than you can imagine. I read and re-read them.  They not only provide my soul sustenance, but they also confirm the reality surrounding me, which at times feels imagined.  The following poem has already been read many times. Each time, it makes me laugh, cry, and reminds me of the miraculous love I felt at Zaven’s burial service. Thank you Oralee.  ”The Butterfly Effect” (click on link): the-butterfly-effect-poem13
• Micah and I also wanted to share with you Zaven’s burial service booklet (click on link):  burial-service-booklet-final4 
• Father Vazken’s words at the Burial Service, along with Father Datev’s words, inspired and comforted us on that day.  I know we both have been thinking about Father Vazken’s message when our minds stray to darkness.  Here we include part of Father Vazken’s message (click on link): der-vazkens-eulogy-excerpts
• A requiem service for Zaven will take place on Sunday, September 28 at St. John Garabed Armenian Church (links: information about-requiem-service1 in the Armenian Church; for directions, www.stjohngarabed.org). The Divine Liturgy begins at 10 am; the brief Requiem Service will begin approximately at 11:40 am, followed by a light fellowship in the church hall.  All are welcome.
• We wish this blog could continue with silly stories of Zaven’s babyhood and childhood, but this is not that story. Rather this story ends with our deepest, deepest love for Zaven and the gratitude to God for each minute we did have with our beautiful boy, and for the realization that life is good. We will continue to look for Zaven in butterflies, smiles, and in the love we create and receive from each one of you. Thank you. 

Video Tribute for Zaven

We feel your love for us. We feel your love for Zaven.  We hope your heart feels Zaven’s spirit through the following video.  Zaven’s amazingly talented uncle, Aram Jibilian, created this short video chronicling Zaven’s life.  In it you will see the love Anais and Van have for him and the joy he created for those surrounding him.  I asked Aram to create this for me, for us and he spent two full days doing so.  What love.

http://video.google.com/videoplay?docid=4626591520815892099&hl=en

Services for Zaven

A graveside funeral service will take place on Thursday, August 21st at 11:30 AM at El Camino Memorial Park in the Vista Del Valle Youth and Infants Section.  El Camino Memorial Park is located in Sorrento Valley at 5600 Carroll Canyon Road, San Diego, 92121, 858-453-2121. Small signs will be placed to help guide your way. Please click on the directions and map to make them easier to read and print.

If you prefer, In leiu of flowers, all donations can be made to Zaven Jendian Memorial Fund and mailed to 4842 Vista Street, San Diego, Ca 92116.

We so, so appreciate all the love and condolences we have received thus far.  Zaven is at peace and smiling at all the love — I just know it.  Though this process has been very painful, we have been nourished by your love and support.  Thank you for celebrating with us when he was born, rooting him on during his life, and aching when he passed away.   Though the road ahead looks bleak, I know each day, the flowers will appear brighter than the day before and the air will feel more and more refreshing.

We also want to acknowledge the amazing love and care we received from the Sharp Mary Birch nurses and RTs, doctors and staff. We especially want to thank Emily, Amy, Vanessa, Erin, Kat, and Nicoll; you showed us how to comfortably share our love with him in his environment through the example of the love and attention you showered him with.  Your laughter, tears and hugs healed us when we needed to be healed the most. Thank you also to Karen for listening and offering wisdom when needed.

I have posted some more pictures of Zaven in the photos section. In these pictures, Zaven is tube free. Much love, Aleen.

Our Little Guy

Zaven passed away peacefully this Monday, August 18th around 10:40 PM.  He was in our arms, covered with our kisses and prayers. 

We will post later today regarding when the funeral service will be.  Possibly this Thursday or Friday.

Again, thank you for everything, everything, everything.

Big Sister Love

Anais holding Zaven

Today Anais held Zaven.  Anais, defines being a big sister as being able to hold your baby for as long as you want, changing the non-stinky diapers, making him/her giggle, etc.  Needless to say, she was very excited to hold him.  She was so gentle, patient, and loving as she held him.  She appreciated each moment. It was both heartbreaking and joyous to watch.

After the Care Conference on Monday, we decided to extubate Zaven one more time. Pray for Zaven, for us, for peace to be with us all.

Baptizing Zaven

 

Zaven with his comforts: Mickey and his pacifier.

Today, Father Datev Tatoulian baptized Zaven. Micah, Anais, Van and Der Datev’s wife, Yeretsgeen, were there. It was lovely and magical. 

Zaven is very comfortable and content each time we have seen him. Anais had given him her stuffed Mickey Mouse and the nurses have found that Zaven loves to hug it when he sleeps.  It is quite a sight! 

He also loves to hold hands:).

Taking Care

Today, Zaven seemed so comfortable and at ease.  He received some blood yesterday due to the amount of stress he experienced on Wednesday. This seemed to help his activity level and color. 

Unfortunately, Micah and I have noted a shift of tone in the doctors.  I think they all feel a bit of disappointment and heightened concern that the extubation did not go as well as they had thought it might.  A care conference is being scheduled for next week. At that time, all those involved in his care (physical therapist, nurses, doctors, social worker, etc.) will be present. It will be a time and place for everyone to discuss Zaven, and to assess where he is and what might be ahead.

We may not post until then.  Thank you to all those who have been praying for us, writing us, calling us, bringing us food to nourish our bodies, lighting candles for Zaven, mowing our lawn, picking up milk for the fridge, taking Anais to the beach and to swim lessons, dropping off presents for Van and Anais, scheduling play dates with Anais and Van, travelling from far off places to visit us and for helping Micah with his work responsibilities.  Also thank you to the genuine care the nurses and respiratory therapists are providing, especially our primary care nurses. We appreciate each one of you.  We thank you for all you are. Your love and care allows us to be more present for Zaven, Van and Anais.

Extubation and Reintubation

Zaven was extubated today and remained extubated for 6 hours and 15 minutes.  Before he was extubated the neo-natologist, Dr Rasmussen, remarked that Zaven looked like an entirely different baby — his tone, his movements all looked greatly improved.  When he heard Zaven swallowing after the extubation, he gave the nurses high fives! We were so excited. Through the bronchoscope, he dedected that the vocal chords were not closing all the way still and that might prevent Z from maintaining his airway. 

Zaven did great for a few hours, but then his heart rate increased to 300 beats per minute and we went into a time warp mode of trying to calm him down, then using medication to bring the heart beats down, and then finally placing an ice pack on his face and shocking his system into calming down.  One hour later, Micah and I felt like we had gone through his trauma.  Very scary hour for us.  Apparently, this SVT is not related to his extubation, but happened to occur on the same day that poor Zaven was trying so hard to breathe on his own and swallow on his own.

For the next 4 hours, Zaven had a very difficult time staying comfortable and finding a rhythm of his own.  During the entire time though, his breathing was fine; it was his secretions that were giving him problems.  He needed to be continually sunctioned.  He just was plain tired.  As were the nurse and the respitory therapist, who took such amazing care of him. So Zaven was reintubated.  They hope to try again next week.

Your prayers, visualizations, and kind thoughts and messages, were not for nought.  The doctors remarks about his progress, the fact that Zaven was able to breathe on his own in many positions is evidence that Zaven is feeling all of our love.  We hope for next week. We hope for Zaven to be.

Another high point I forgot to mention, is that Micah and I saw his face,  When they extubated Zaven and before they put the CPAP on his face (a device that provides air pressure to his lungs), we looked at his beautiful face without any tubes or tape.  He looked so sweet.  It was too short to have taken a picture. But we saw him .

Holding Zaven

As we wait for Wednesday to approach, we are able to enjoy Zaven without the business of tests and exams taking our time away from him.  Anais and I were able to give Zaven a sponge bath today.  She cleaned his belly and videotaped the entire event.  Anais is really beginning to connect with him.  The nurses really try to include her in his care and make her feel like the amazing big sister that she is. 

They have moved Zaven in his own private room.  Because he is a full term baby, he is more sensitive to noise (which there is quite a bit of in NICU) and to light (they are not shy with the use of florescent lighting:)).  He is resting much more and appears to be less agitated.  One of our primary nurses, whom we love, really encourages us to hold Zaven as much as we can. Yesterday, I held him for a glorious three hours. Micah had a similar experience the night before.  The feeling I have when holding Zaven reminds me of Charlie and the Chocolate Factory.  In one of the opening scenes, the kids are in a candy store and the store owner breaks out with “The Candy Man”.  Then he throws candy at all the sugar hungry kids.  That is me;  a kid at the candy store, just staring away, and then, the moment comes when a kind nurse hands Zaven to a Zaven hungry me.

We will post again on Wed with the results of the extibation.  Prayers, visualizations, finger crossings, are all welcome especially on Wed at 830 AM.  Love to you all.

A Bit Closer

Well, we are now a bit closer to understanding Zaven.  Dr. Magit (the pediatric ENT) examined Zaven’s airways and its surroundings and found everything to be structurally sound.  On Wednesday at 830 AM, they plan to extubate him.  At this time, Zaven’s neo-natologist and Dr. Magit will examine the functionality of his airways, vocal chords, etc.  By they way, they have an underground tunnel from Mary Birch to Children’s Hospital. It’s like some secret tunnel way; very maze like — I would never be able to find my way around there. They put Zaven in a travel crib and wheeled him along.  He slept the entire way:). 

Zaven, as we have come to realize, is a fighter.  Micah and I imagine Zaven breathing on his own successfully; we imagine his vocal chords closing properly; we imagine his secretions being managed; we imagine the removal of the breathing tube to go successfully.