Sunday, October 24, 2010

Sisters by Heart

This weekend, Bodie, Dusk and I had the privilege of seeing one of my most special fellow heart moms, Cindy, whose sweet angel Isaac was Bodie's roommate following his Norwood. Cindy and I became so close as our boys were roommates for pretty much Bodie's entire 5 week stay at Children's after his Norwood. Cindy gave me a beautiful Willow Tree angel called "Sisters by Heart" and the description is "Celebrating a treasured friendship of sharing and understanding." Wow. There is no better way to describe my relationships with my fellow heart moms. These brave women understand. They've been there. They've faced the same, unmentionable fears that I've faced. They've cried the same tears that I've cried, as they've watched their sweet babies in pain, with countless tubes and wires. They've pleaded with God to save their child. They've experienced the same incredible joy I've felt when their child has turned a corner and started really progressing...and the same frustration, disappointment and fear when the child turned right around and started regressing again. 2 steps forward...1...or 2...or 3 steps back is the heart mother's mantra. They've wondered, in their darkest hour whether they will outlive their child, whether they're allowed to have hopes and dreams for their child. No one can understand like these women can. So tonight, I salute these incredible women. I can only hope I can show the same encouragement, love and steadfastness for my heart warrior that they have shown for theirs.

The heart moms I've met in person and had the privilege to walk alongside. I've grown to love their children as much as my own...

Cindy and sweet angel Isaac (Trunctus Arteriosis)

Dana, beautiful mama to feisty Addie (ALCAPA - Anonymous Left Coronary Artery)

I remember the night Addie was admitted to the hospital. She was admitted to 6west (the general cardiac floor) into the telemetry room (4 beds). Poor Dana was beside herself (Addie had not been diagnosed prenatally and was suddenly diagnosed at around 6 months of age and hospitalized pending almost immediate surgery) and Addie ended up rooming with Isaac and Bodie. It was really late at night, and Cindy and I were pretty punchy to put it mildly. At that point, our boys had been roommates for almost a month at CHLA and we were just over the whole experience. We were just cracking ourselves up over stuff that really probably wasn't even remotely funny but, well, you do what you have to do to cope. I distinctly remember telling Dana that Addie wouldn't have to be there forever because "well, they have to send you home sometime right? Right, Cindy? Eventually they'll find an excuse to kick our boys out of here, right?" and telling her what a great roommate Bodie was because he couldn't make any noise due to his vocal cord paresis. I just remember Cindy and I laughing so hard over that. I'm sure Dana thought we were crazy, but we were coping the only way we could. About a month later, upon Bodie's readmission, I met Dana again in the CTICU and a true friendship was born. Dana and I continued to see one other over the next few months as Addie milked her time in the cticu with all she had and Bodie continued to float in and out of the CTICU like they were giving away free candy. Dana is incredibly strong and has such a sweet spirit. I feel SO lucky to have met her and am still looking forward to our first playdate outside of the hospital.

Lucy, light-filled mama to sweet Babs (valve repair/replacement)
Barbara Ann, better known as "Babs," was Bodie's roommate after his Norwood. Lucy and her husband Tommy were there all the time. It was always so comforting to see one or the other there at her bedside every time I walked in to the room. During one of our many conversations, we learned that not only did we share a cardiologist (the amazing Dr. Nancy Kim), but we also shared a gynecologist (Dr. Taz Varkey, who saw me through both the pregnancy of the baby we lost last year, but also the beginning of my pregnancy with Bodie). I loved Lucy right away - she shared our faith values, and just had such an amazing positive spirit.

Jean-Marie, bubbly mama to handsome little dude Liam (Tetralogy of Fallot)

Liam was Bodie's very first roommate. They both had their surgeries the same day as well as their chest closures. Let me tell you, Liam is one strong little dude, totally on the fast track. He was there it felt like 2 seconds, and then bam, was extubated, then eating, then upstairs and then home! Jean-Marie and I bonded almost immediately - I think it had something to do with trying to figure out pumping and walking and standing all while recovering from a c-section. I can remember going over to one another's beds to check on the progress of our kiddos. I distinctly remember one nurse telling me we weren't supposed to talk to other parents or "compare" progress of our kiddos. So maybe she probably was right - there was a teensy bit of jealousy on my part when Jean-Marie was holding Liam and giving him a bottle and Bodie was still completely intubated with no hope of extubation any time soon. ;-) But whatever - we totally ignored the rule and bonded anyway. Gotta love a fellow rulebreaker, especially one as sweet as Jean-Marie!

Sara, advocate mama to hero Townes (HLHS) (

Oh I think you all know how I feel about Sara. She, and her entire family, have literally been our lifeline again and again throughout this whole process. She and I met through the California Heart Connection when I was 7 months pregnant with Bodie and a lifelong friendship was born. The Hale Family lives in El Segundo (less than 10 minutes away from us), Townes and Bodie have had all of their surgeries done by Dr. Starnes at CHLA and our little guys had their last surgeries on the same day (we actually carpooled up a few days when they were in the cticu together). We LOVE Sara. Enough said.

And thank God for the internet, for Facebook and the blogging community. Because of it, I've been able to meet so many other HLHS families and bond with heart moms whose kids are also on this same crazy and uncertain journey that our sweet Bodie is on. It seems crazy to say I love these women I've never actually met in person, but I do. I feel like I know them - we've rejoiced in our kids triumphs together and cried over their struggles together. I am forever indebted to these women:

Jenny, sweet mama to miracle Aly Jean (HLHS) (

Jessica, strong mama to miracle boy Paxton (HLHS)

Kathy, unbelievable CHD avocate mama to chubster Jake (HLHS) (

Nicole, inspiring mama to the amazing Travis (HLHS) (

Stacey, amazing-writer mama to beautiful princess Zoe (

Sigh...there are SO many other heart moms I'd like to include, but (i) it's seriously getting late and I still have to pump and do meds and (ii) most of the other moms I looked up didn't have any pics of themselves with their heart kids on either their blog or Facebook page (seriously, heart moms - get out from behind the camera and show us your lovely faces!!!)

A special tribute to 2 heart mamas who I met recently whose journeys with their special heart babies had barely begun before God called their special boys home. Please say a special prayer for these beautiful heart mamas missing their angels tonight...

Lauren, mama to sweet Angel Caleb (
Jill, fighter mama to warrior angel Joshua (
And finally, a special tribute to a sweet fighter who lost his battle with HLHS earlier this summer...

Miranda, warrior mama to incredible fighter Wyatt

I always felt a special bond with Miranda and Wyatt, I think because I followed Wyatt's journey from when Miranda and I were both pregnant together and our boys were only born a week apart. I am still at a loss over sweet Wyatt's passing and have to honestly tell you that I cried when I pulled his pictures up to find a picture of he and Miranda together.

Fly high sweet angels. Comfort your amazing mommies tonight.


  1. Prayers continue to pour out for all of you. Amy, what an amazing tribute to all the mommies going through what you're going through. I definitely teared up reading each story. You all continue to amaze me with your strength. May the good Lord continue to bless you all.


  2. Thank you Amy for that amazing tribute. You are an inspiration to us as well. I don't know how I would have gotten through this without your friendship. I am so glad to have met you and have you by our side during this journey.

    Mom to Chubster Jacob (hlhs)