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 4, 2009

Human Pin Cushion

It's been three weeks and 2 days since Scarlett's 2nd open-heart surgery and every time I change her diaper, I'm reminded that she was a human pin cushion throughout the duration of her hospital stay. The site where her groin arterial IV line was located is still very obvious to see when I'm changing her diaper. Don’t know if I mentioned it or not, but they actually SEW those IV lines in! So she has holes from the arterial IV needle and holes from the multiple stitches to keep it in. (same with the arterial IV line in her neck).

In addition to her left groin, she still has needle prick marks on both hands, both feet, both wrists, right neck, and the insides of both of her elbows (I don't know what that area is called, but its where most lab phlebotomists take blood from and where United Blood Services draws blood from.)

Speaking of United Blood Services, I have an appointment on Monday to donate. This will be my third time donating blood (I’ve attempted before, but I usually don’t pass the iron test). I told our blood donation coordinator, Kathy, that I will ALWAYS be a blood donor because of Scarlett. She had to get blood for both her first and second surgeries.

Well, I’m happy to announce that Scarlett is doing fantastic. Every day is a little better than the previous. She’s getting less and less fussy and more and more independent. Slowly she’s returning to her previous (pre-surgery) self.

At yesterday’s cardiologist appointment she only weighed 13lbs, 4 ounces. I was very sad because last week, she weighed 14lbs 4oz, so she lost a whole pound in a week! [not good] :( But Beth (Scarlett’s cardiologist) wasn’t too too concerned. She said it was because Scarlett was throwing up so much and we had to do 1/2 milk and 1/2 Pedialyte (not enough calories to gain weight successfully) for a few days.

So yesterday Beth said to increase my breastmilk calories from 22 to 24. That means I add 2 teaspoons of Nutramigen baby formula to every 6 ounces of my breastmilk. (No biggie). Hopefully she’ll beef up a little bit. She’s definitely getting her appetite back which is just marvelous. :) We don’t have to go back to the cardiologist for 2 weeks. And maybe this next time it’ll be for 1 month, then 3 months!! I can’t believe or imagine a day when we only have to go once every 3 months! Hello normalcy… here I come!

Oh, and I was a little worried about her coming off the oxygen prematurely, but at yesterday’s cardiologist visit she was 100%!!! Yeeeeeee haw! Fellow heartmom Julie was teasing me yesterday at the CHIEF graduation saying that Scarlett was just ‘showing off’ that she was tube free… like Scarlett was saying ‘look at me, no oxygen ha ha, look at me no feeding tube, ha ha!’, because Julie’s poor baby Eva still has both. : ( poor lil darling. Julie was carrying around Eva in the front with two backpacks in the back. One for the feeding pump and one for the portable oxygen tank. I feel very bad for her, and I count my blessings that Scarlett is doing so well.

Things are getting better and better everyday and I’m so happy. I feel really lucky and truly blessed. :)


  1. She looks so adorable. You are both blessed! She has a wonderful mommy and you have a beautiful daughter. I am so happy to see her tube free and look forward to that day myself (and not just because Hope decides to pull the NG out again!)

    I also want to say "Thank You" from all the heart mommies out there whose children have needed blood. I am not able to donate yet, but plan to as soon as I am able. It is such an easy way to contribute and it warms my heart when I hear that someone is donating their blood to save the lives of others!

  2. She is so beautiful! I remember this was one of the worst things watching my baby go through besides being intubated getting poked over and over again about 1000 times. I hated that her body was a reflection of the war she fought, a battleground of scars. But she survived and so did Scarlett, time will fade these wounds.

    Hooray about her O2 levels that is awesome!