Pregnancy and Infant Loss Remembrance

October 15 marks Pregnancy and Infant Loss Awareness. Last year many friends and family supported our cause to the Cincinnati Fetal Care Center in honor and remembrance of Julia. We were overwhelmed by the love and support. There are many great organizations at your local Children's hospitals and even the well known March of Dimes that works to prevent birth defects and infant mortality.

Over two years ago we found out we were having identical twins. We were faced with impossible decisions that made us question our morals and our faith. I went from trying to detach from a seemingly doomed pregnancy, to giving all my heart and soul to bring these two girls into the world.
Almost two years ago we said good-bye to Julia and welcomed Ava into the world. I would not say it's gotten easier over time. It's a daily battle of mind over matter. I think of how things were supposed to be and tell myself that if they were supposed to be then they would have been. It's a hard lesson to learn that there is just no making sense of some things. I replay the precious moments we had with Julia over and over, and yes, I fantasize that things went differently. I wish I spent more time with her, wish I would not have had the photographer in the room "making memories" but instead focused on leaving that imprint on my heart and mind.

There are some things I can handle better this year than last year. I do not feel a stab of pain when I hear about anything related to identical twins. That was a tough one, given that my best friends are identical twins. I've learned to censor myself when it comes to talking about Julia to complete strangers, and even to people that know what we went through. It is unfair to them and unfair to me. I still get choked up. A lot. I get sidelined by a grief so intense that it takes my breath away. I look at Ava every single day and wonder how this has already shaped her--I believe Julia was the water to Ava's fire--and how it will shape her future when she hears the story one day. I believe Julia hung on just long enough so that Ava could survive.

I am determined to make this a survival story and not one of victims. We are stronger in our marriage and we are stronger in our love for what we have. We believe in miracles, even though sometimes it's not the complete miracle we asked for.

Taken last year. A new tradition of releasing a balloon in honor of Julia on their birthday

Just because

Ava is napping next to me. She has croup. Croup is not fun. Croup is messing with an already precarious sleeping pattern. Anyway, my iPad is keeping me company at the moment and I came across this picture.

Do you hear what I hear?

above picture courtesy Sophia

 

 

Ava had a hearing test at Children's hospital the other day. It's the first to rule out in the process of figuring out why she isn't really talking. I'm no longer in denial about Ava's lack of language. I wanted to give her some time to see if she would pick up her pace at using words, but I felt that the last month not only produced a standstill, it seemed like there was regression. I am fully aware of the wide span of language development at this age. I really wanted to give her the benefit of not comparing her to her early talking older sister. Factor in a never quiet Sophia (seriously, that girl does not stop talking. Ever. She has the gift of gab. God help us all if she takes after my Aunt Jacque. Or my cousin Stacey.) But Ava doesn't really say words. She says stuff with inflection. Does a lot of pointing and whining. She screams for things she wants. It's frustrating for all parties. She also has Miss Chatterbox Sophia to tell me what Ava wants. And then there is the pacifier, which I'm sure doesn't help matters. But it all comes down to her prematurity and that she should be streamlined into programs to evaluate her for a speech delay and to give her the help she needs. So I started making the calls a few weeks ago and discovered that there has been major funding and budget cuts to these programs. Everything is impacted. And I felt like I screwed up on taking the wait and see approach. The resources were there when I was offered them back at Ava's last high risk assessment. Enter the guilt factor, and I kind of kicked into high speed panic trying to get Ava help. After hitting a few roadblocks, I talked to her pediatrician, who sent referrals to the proper channels. She also suggested I get Ava's hearing ruled out, hence the appointment. Perhaps she was hearing us but the sounds were muffled. That would make sense, given that she says words back muffled. I doubted that she had hearing problems. She seems oversensitive to noise, really. But I am fully on board to ruling everything out.

Ava passed the hearing test with flying colors. If there were a parade for this event, she would have been crowned queen. As I was filling out the questions in the waiting room for her appointment, one of the questions asked if I had concerns about her behavior. Um, she's a holy terror. Yes! So wouldn't it be par for the course that Ava sat perfectly still during the entire hearing exam. She did not even squirm. All subjects were amazed at her behavior. I asked if I could bring her back for some peace and quiet in the future. Surely they pump some type of happy gas or Valium into that place, because Ava did not have one outburst. The person performing the test must have thought I was nuts for even mentioning behavioral issues.

So now that she in fact hears as clear as a bell, we move onto the next step and wait for the regional center to call back and start the interview process. I am told this can take 45 days. In the meantime, I will continue to work with her like I have. I also signed up for a group session with her that takes place once a month at a speech pathology center, just to see if I can get some more tools and information on "Expressive Delay" which is the current theory for why Ava isn't talking as much as she should at this point.