This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, November 11, 2009

Heartmom Friends

(Brenda with Diego [HLHS], me and Scarlett [TOF], Shelley with Ellery [TOF])

I had mentioned in a previous post that up until Scarlett was 2 months old, I only knew 1 other Heartmom. When I was pregnant, I asked (more like insisted) the cardiologist to be connected with another mom of a baby with a heart condition...preferrably one with Scarlett's same defect. Beth (Scarlett's cardiologist) gave me the phone number of Molly C and I called and left her a voicemail...something along the lines of "hi, u don't know me, but Beth gave me your number...and my daughter is going to be born with the same thing your son/daughter has and I was hoping we can talk..etc..".  Then when she called back we had a very nice, long talk about how, when, where we found out about our baby's defects.

Then of course I had a million questions about what to expect during my hospital stay, surgery, post-surgery, etc...I am so thankful that I was able to meet Molly and her son in person last January (a month before Scarlett was born). Then, the day Scarlett was born, she was there to offer support and encouragement and we have kept in contact ever since, and for that I am thankful.

Well, in that same previous post "Heartmom", I also mentioned how I became acquainted with *several* other heartmoms back in April this year...and I wanted to take the time to mention again how utterly proud and happy I am that I know these other supportive and caring women.

 (Molly W with Mark [HLHS], me and Scarlett [TOF] )

Last month, when I was in the hospital with Scarlett I had 9 (count them, nine) heartmom visitors. In order: Heidi A, Molly W, Jenna M, Kimberly V, Molly C, Radhika R, Heidi S, Brooke P and Rosemarie T.  Allow me to back up a second... I adamantly told my friends and family that I was not allowing any visitors during Scarlett's recovery.  In fact, my aunt who works for St. Joe's came up to the 7th floor and tried to see Scarlett (albeit the day of her surgery), and was turned away by the front desk (check-in station). They told my aunt that Scarlett was not allowed any visitors. So the entire time Scarlett was in there, I didn't have any visitors...except heartmoms.

When my first visitor arrived at the door (day 2 after surgery) to my hospital room, I joked with her ..."how did u make it past the guards?", then I joked: "I guess heartmom's are exempt from the 'no visitor' rule'" ; ) because heartmoms know all the staff on the 7th floor PCTICU, and usually don't have to stop to check-in.  I'm so glad she came, I *love* seeing and talking to other heartmoms.

I said it before and I'll say it again.. no one understands you like another heartmom. No one understands the PCTICU environment, the medicines, the doctors, the IV lines, the nurses, the monitors, the alarms, the 'rounds', the feeding tube, the pulse-ox, the oxygen, the surgery, the recovery, the sleepless nights, the worry, the fear, and the successes like a fellow heartmom.

The clinic where I take Scarlett for her biweekly cardiologist visits is also on the St. Joseph's campus. So, when heartmoms (including myself) take their baby for their routine check-ups, and we know someone who is on the 7th floor, it's very easy and convenient to pop up there just to say "hi" to fellow heartmoms and heartbabies.

I think that can account for at least 5 of the 9 visitors I had (they were there anyway, and made the decision to stop on by since they were in the 'hood). But on the opposite realm, some of these heartmoms not only took the time to come visit me, they purposefully drove down to the hospital for the sole purpose of stopping by to see me and Scarlett. These heartmoms even brought me lunch, brought Scarlett toys, blankets and stuffed animals. They are so nice. I love my community of heartmom friends.

(Heartmoms: Heidi S (mom to Ethan[HLHS], me, Radhika R (mom to Rish [HLHS])

I am on Facebook and I am friends with 38 heartparents (wow! that even shocked me typing it!) I love reading their posts and seeing pictures of their heartbabies. It is so great! Facebook and this blog are such a godsend to me. I am thankful for modern technology, and most of all I am thankful for Heartmom friends. :)

By the way Scarlett is still doing really great. She's trying to crawl and still has moderate separation anxiety. She is 4 weeks post-surgery and she's doing better and better with each passing day. Thank you God for all my blessings today.

1 comment:

  1. Heart moms are the best! And only another heart mom can truly understand this!