Friday, October 09, 2015

5 Year Angelversary & CCHD Conference

I hope you all will bear with me. Jessica's angelversary was on Sunday but I am still having difficulty accepting that it's been 5 years since I held my beautiful, amazing, sweet, loving daughter Angel Jess. The pain isn't as raw as it used to be and I am able to focus on other things but sometimes it feels like an eternity until I get to see her again. Since my presentation at the CCHD (Critical Congenital Heart Defects) I have felt my girl pushing me to share more of her story. There are many amazing stories that I haven't put into writing and I've been too grief-stricken to write about them but since my presentation I've realized how important it is for her story to be told. Jessica's legacy should be shared so that it can live on. She was the most brave, amazing, determined, loving, generous, miraculous "little girl" I'll ever know and I'm soooo grateful that I get to be her mom for all eternity.

I was touched by the concern of the doctors, nurses and midwives who attended and it was great to see one of Jessica's peds cardiologists again. After the presentation he told me that Jessica was a pioneer. It was because of mine & my husband's decisions to have her go through certain surgeries and procedures that many CHD children are benefiting from having them available now. Jessica was the 9th child to ever have the surgery called "Unifocalization of the Collaterals" in all of the US. At the time it was the only hope for Jessica of ever receiving her complete repair. Sadly it did not work for Jess but it is saving lives every day now. They do the surgery at a much younger age now but it wasn't available for Jess until she was 5 years old.

I also had to fight the school district for them to honor Jessica's DNR (Do Not Resuscitate) orders. After over 2 years, I was able to talk to the legal team and we came up with an agreement that DNRs would be honored if there was an Emergency Plan. Believe it or not, it came down to me that someone on the Board of Directors said, "We're not in the business of having dead children on campus". That was the reason they didn't want to honor the DNR orders. They were worried that an ambulance wouldn't take her to the hospital if they didn't start CPR. I found out that they would so that helped my case. Jessica earned the right to die peacefully. Besides, her heart was enlarged so if they started compressions it would only damage her already compromised heart and if they did mouth-to-mouth (as it was done back then) they would have to take off her oxygen so that would have been doing more damage than good. As I was telling this story I held up the original "Emergency Plan" that was the first one ever to be done in the school district. Since then both Karl and I have met people who have thanked us for setting it into place because they had children with DNR orders too.

I had the opportunity to talk to the person in charge of newborn screening in all of Arizona and I shared a flyer that was sent to me by Hazel Greig-Midlane from the UK (THANKS AGAIN!) and we are going to work together to create one to send home with every mother of a newborn baby. The flyer lists all the symptoms that a baby with CCHD - Critical Congenital Heart Defects - would have. Oh how I wish I had had one to put on my fridge to help me know that my daughter was in congestive heart failure. Jessica almost died because I didn't know she was dying. We were told numerous times that if we hadn't brought her in that day she wouldn't have survived through one more night.

This is why CHD & CCHD Awareness is so important. We need to save the lives of babies with CCHD by educating new parents about them. Far too many parents don't know the symptoms and aren't as fortunate as we were. We almost missed out on the best 22 years of our lives with Miss Jessica Marie. We are forever grateful for those years.

Many of you have told me that you miss hearing stories about Jessica and I think I am finally ready to start writing and sharing those stories. Thank you all for your continues support and love. <3 span="">

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