Short break

I will be taking a short break from sharing Ava’s story. I should be getting her medical records from CHLA very soon and once I do I will have much more to share.

A Helpful Book: When A Friend's Baby Dies

Reblogged from I Tri 4 You:

This morning I came across this free ebook, When A Friend’s Baby Dies (Helping Your Friend After Babyloss) by  Kristine Brite McCormick who is the mother of Cora.  Cora was only five days old when she died.  (You can learn more about Cora and Kristine on Kristine’s blog, Cora’s Story.)

I agree with Kristine that “Every mother is different.  

Read more… 96 more words

BT Shunt, Glenn, Fontan, & Ladds Procedure

The BT shunt would’ve been part of Ava’s first needed surgery. She also would have needed very complex surgery for her pulmonary veins. Some surgeons at hospitals like Stanford in Northern California, Boston Children’s Hospital, CHOP, etc. could have handled it but most hospitals wouldn’t know what to do with a baby like Ava. Here is an overview of the BT Shunt. Ava would have gotten the Shunt within 10 days of birth, the Glenn around six months, and the Fontan around one to two years of age.

I can’t pretend to fully understand these procedures but articles and videos are helpful when trying to understand the Glenn and Fontan procedures.

From what I have been told by mom’s and doctors almost all Heterotaxy babies like Ava have malrotation of the intestines. If the malrotation causes obstruction of the bowels then a procedure called Ladds is needed. The Ladds procedure is performed when needed and usually happens before the Glenn procedure, correct me if I am wrong.

I found these videos from Kristen Spiker’s blog about her experiences with Heterotaxy and her son Logan, a Heterotaxy warrior. It wasn’t until I read Kristen’s blog that I actually knew the names of the surgeries Ava was going to need. I’ll tell you all about the hectic 9 days before induction when Kristen was trying to help me in another post, it was a long week.

Ava’s Grave

We visited Ava’s grave on Christmas and yesterday morning for the new year. Most of the graves were decorated. The cemetery was more festive than my apartment complex!

Christmas flowers. Next year I want to get a little more creative. 

Ava’s grave is to the left without a headstone. My dad is the guy in the purple shirt and he is looking at Paul’s Dad’s grave. The empty plots between the two graves are reserved for Paul’s grandparents. We wanted Ava buried next to family and I hope to be buried next to her.

Ava’s grave and the flowers we brought. Her headstone hasn’t been placed yet but it should be soon.

Dreams

I have been having very vivid dreams about Ava. Last night was probably the best one so far and I thought I would share it. Dreams like this happen when you’re grieving but this type of grieving I actually enjoy. Well, until I wake up that is.

My dream last night started at the Children’s Hospital of Los Angeles, where Ava had died. Except in my dream she was able to be transported. It was a very magical helicopter that came through the ceiling and took her away to a surgeon who could help her. For some reason I had to drive but when I got there she was out of surgery and doing well. Although very unrealistic, she was ready to go home right after I got there.

We had to take a boat home and it was dangerous. There were sharks and alligators trying to attack our boat. Maybe that was my brains way of interpreting struggles while Ava was recovering. We eventually made it home and Ava was safe. The dream ended with her taking a nap on my stomach/chest. It felt so real. I’ve never felt such realistic human contact in a dream before. It was as if she was really there.

When you grieve the loss of a baby it’s almost as if you lose control of your own mind and body. I follow blogs of other grieving mothers and I notice many similarities. Many woman have vivid dreams, feel phantom kicks, hear the hospital monitors at home, and have many other signs of post traumatic stress. It comforts me to know that I am not alone.

A Note to Family and Friends

Thank you for not expecting too much from me this holiday season. It will be our first Christmas without our child, and I have all I can do coping with the “spirit” of the holiday on the radio, TV, in the newspapers, and stores. We do not feel joyous and trying to pretend this Christmas is going to be like the last one will be impossible because we are missing one.

Please allow me to talk about my child if I feel a need. Don’t be uncomfortable with my tears. My heart is breaking and the tears are a way of letting out my sadness.

I plan to do something special in memory of my child. Please recognize my need to do this in order to keep our memories alive. My fear is not that I’ll forget, but that you will.

Please don’t criticize me if I do something that you don’t think is normal. I’m a different person now and it may take a long time before this different person reaches an acceptance of my child’s death.

As I survive my grief, I will need your patience and support, especially during these holiday times and the “special” days throughout the year.

Thank you for not expecting too much from me this holiday season.

Happy First Birthday Noah!

This post is dedicated to Noah Winslow Tahir. This Friday, December 9th, is Noah’s first birthday. Noah is a Heterotaxy Angel, like Ava. He passed away on January 10th, 2011 in the CICU. His amazing mother, Susan, has been a friend and an inspiration to me. Susan found strength through Noah and began training for a triathlon about a month after his death. Needless to say that Noah and Susan reached personal records that day. So, In honor of Noah’s birthday I am going to run a mile, hike Mt. Rubidoux, and end with an hour of yoga.

Please keep Susan and her husband, Misbah, in your hearts, thoughts, and prayers in these next few months. Losing a child is one of the hardest things you can experience in life and the anniversaries are just as hard.

 

Ava

Hi! My name is Alex and I’m Ava’s mom. Paul, Ava’s father, and I have started this blog to help Ava spread awareness of Heterotaxy. Heterotaxy is rare. There are even doctors who do not fully understand Heterotaxy or how to care for a Heterotaxy baby. I hope reading Ava’s story will help you understand more about Heterotaxy. It wasn’t until after Ava was gone that we truly understood the severity and complexity of her defect.

Ava means a bird and Alexandra means a helper and defender of mankind. Paul and I believed Ava was capable of doing anything and we still do.

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