Dodging Bullets

Dodging Bullets

Written Nov 15, 2011 9:48am by Amber Gannon Medina

I remember when I was around 8 months pregnant I was browsing the pregnancy and kids section in our local library (sitting sprawled out on the floor because standing was getting not so fun at that point). A book about kids with congenital heart disease jumped out at me and I hesitantly pulled it down. When I opened the book it immediately turned to the section entitled Hypoplastic Heart Syndrome. Once I finished reading chapter, John walked over to find me and I remember so well what I said. I said, Oh my god John-we really dodged a bullet...

That moment has replayed over and over in my head since Mira was born and diagnosed with the very same Hypoplastic Heart. People at the hospital have asked us over and over again-did you know she had this condition? The answer to that is complicated for me. We found out that Mira had a smaller than normal left ventricle at our 20 week ultrasound. When we got home from that very memorable appointment, I did what everyone told me not to-I googled it. Holy terror! It was so scary and so overwhelming....I just couldn't fathom that my baby would have to go thorough all that pain and suffering and in the end she might still not have a "normal" life. 

Because of Mira's diagnosis we had ultrasounds every 3 weeks. Not only did we begin to see her personality emerge, we also were told she had "grown" out of her hypoplastic diagnosis. We were told she may have to have a non invasive procedure for her aortic arch but that things looked great....The relief was overwhelming and we were overjoyed her left ventricle had caught up with the rest of her heart.

When I look back I can't figure out if I was in denial or if her doctors really did feel that Mira had dodged a bullet. All I know is I am only starting to wrap my head around the fact that all of those google articles I read, that scared me so much, are now what we are experiencing. However, it is so different from what I imagined or read because it is MIRA....It isn't some faceless kid or a study of nameless babies-it is our flesh and blood, a feisty hot blooded blondie with John's lips and my ears. While I may have thought this would make all of the turmoil we are going through more difficult, it actually makes it easier because of our love and the bond we share with her. While I still wonder if I am strong enough to make it through this, I have never doubted once that it was worth it or that Mira doesn't have what it takes to prevail.

Its amazing how well I know her already. Sometimes when we stare at each other (those big blue eyes can talk so loudly!), I feel like I've known her forever. I realize this might be a very normal mother daughter experience but my need for this connection is extremely vital to me, both because we have very few ways to communicate and because I feel that knowing her is very important to her well being. I know her upset and I need to be suctioned face, her I woke up feeling scared look, her stop touching me grimace, and the I am content and just looking around mood.

Yesterday, when we visited her after her chest had been closed, I found I could still feel and see what she needed. Even though she had been paralyzed, heavily sedated and given multiple doses of ativan and morphine-she OPENED her eyes when we came in, and continued to do so throughout the night. While sitting with her, we discovered what she liked-John singing to her, me stroking her head and talking to her-and what she did NOT-namely loud voices and suctioning.

The one thing we weren't sure about is whether she liked her chest closed. Yes, she has her chest closed!!! Let me just get really excited here for a minute-after a month of struggling, Mira has her chest closed!! They warned us before they performed the procedure that they were not sure how Mira would react, and when we came in to see her yesterday afternoon, she was not doing well. Her renal numbers were very very low, her blood gases showed high acidity and she needed blood and albumen. The attending was very concerned with keeping her closed and they had left all the OR machines in her room just in case they needed to act fast.

Her chest looked so pretty! Just a narrow piece of gauze covering her new scar-and except for a little edema she looked really good.I stood there with her for hours and fought so many emotions-first I found I could accept whatever God wanted for Mira and I wanted to let her know I loved her and was there for her. She started to get better and I was truly excited she was moving forward. However, once she started to plateau and then to drop, I felt such intense worry and sorrow and a strong desire to somehow make it all better. 

We left the hospital not knowing how she would do and with instructions to call us if anything happened. I went to bed with Mira's prayer shawl and my heart still resting with her at the hospital. When we woke up this morning, my first thought was-I didn't hear from the hospital!! Yay!! And when we called they told us (they were almost as excited as we were), that she had started doing much much better around 1am, and that her renal numbers and blood gases had improved quite a bit (renals in the mid to upper 50's). 

There are so many conflicting emotions surrounding this good news. I am mostly just really happy and very proud of Mira. I know she worked hard to get through this and I am so impressed by her continued show of strength and chutzpah. However, I am also afraid of feeling too happy and excited because I've found it can hurt more when we experience a set back. However, I know I feel most at peace when I realize this whole journey is in God's hands. What happens with Mira is not decided by me and the only thing I can control is how I react to all of these ups and downs. I've decided to be very very happy about this turn of events-Mira is truly our Miracle and today is a good day!

Let me just say it again, because it feels so good-Mirabelle's chest is closed!! Pictures are coming!