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.

Tuesday, March 2, 2010

Mommy's Paranoid and No More Pumping!

Today I took Scarlett to the cardiologist for her routine follow-up appointment. I also took Violet for an echocardiogram. Yes, you read right, Violet. Ever since Dr. Alboliras told me that my baby (Scarlett) would be born with a complex congenital heart defect, I've been paranoid that Violet (my 3 year old) might have an undiagnosed CHD too. So for the past year, it's always worried me.

At Violet's 3 year check up last month, I told the pediatrician to listen extra carefully to her heart for any murmurs. Which got us talking about why, which lead to the pediatrician referring Violet for an echo based on family history.  On the car ride to the clinic today I taught Violet a new word "paranoid". I told her mommy's paranoid. Because the truth is, mommy IS paranoid that something might be wrong with her heart, and I'd rather be safe than sorry.

I already had an appointment scheduled for Scarlett today (can you believe it's been 8 weeks since her last appointment?), to check her heart [and weight], but since I was going to be there anyway, I had them schedule an echocardiogram on Violet too. So while daddy and Scarlett were in one exam room, mommy and Violet were in another getting the echo (ultrasound of her heart) done. 

And I'm happy to say that it came back 100% normal. Yay! :) Violet's heart is great.

Scarlett's cardiologist said that her heart looks great too! We don't have to go back for another 2 months! Which is so great because last year we were at the cardiologist's office every 2 weeks, so to be able to wait 2 months is fantastic.

As for Scarlett's weight, she's still small for her age. She weighs 16 pounds, but she's still holding steady on her own growth curve which is slightly under the 0 (zero) percentile. So although she's not on a "normal" growth curve, she is still growing which is a good sign. I have to continue to add butter to her diet and add carbohydrate powder to her milk, but she's doing great.

Speaking of milk.... I'm happy to announce that I have officially STOPPED PUMPING! Yee Haw!  Any mother can breastfeed (no biggie), but it takes an extra dedicated (a.k.a. ~crazy~) mom to exclusively pump for 365 days. (or 372 days in my case). Yes, because of Scarlett's heart condition, she was unable to nurse. She was on a feeding tube for the first 6-8 weeks of her life, I also had to fortify my milk to increase her calorie intake, and in addition to all of that, she aspirated her food and I have to thicken it with a thickening packet. So to this day, Scarlett has never actually 'breastfed' (nursed).

But since it was so important to me to feed Scarlett breastmilk, I'd been pumping, pumping, pumping since day one. Never being able to feel the bond that accompanied nursing her. Instead, I had a special relationship with my breastpump. It's no wonder... since I pumped day and night round the clock... At work, at home, in the car, at my mom's house, my sister's house, my aunt's house, my cousin's house, my friend's house, at baby showers, at bridal showers, in parking lots, in bathrooms, in offices, at the hospital, on the toilet, on the bed, on the couch, on the floor, on the chair, in a moving vehicle (while someone else was driving of course!), in the front seat, in the back seat, in a parking garage, ...yes, I was a regular "Dr. Seuss" (Green Eggs and Ham reference).  I even pumped and dumped when I ate spicy foods or during the 2 times that I consumed an alcoholic beverage in the last year.

At any point in time for the last year you could ask me "What are you doing", and I'd answer "Pumping"... or sometimes I'd just say "What do you think I'm doing?"... Or I'd be talking on the phone while pumping and friends would say "What's that noise", and I'd say "I'm pumping"....or people at work would ask "Where are you going".. and I'd pat my breastpump bag and say "Where do you think I'm going?". Even my Violet knew what mommy was doing. I'd ask her "What's mommy doing?" and she'd say "You're pumping your boobies!".. and I'd say that's right..I'm making milk for Scarlett!!

You may ask..'Aren't you going to miss it?', and I will quickly answer "NO!". Oh, and a note to all my breastfeeding/pumping mom friends out there... Don't Stop Cold Turkey!! Evidentially, you're supposed to stop  g r a d u a l l y.   Uh... duh... why didn't I think of that?  In fact, my body is still sending messages to my boobs to make more milk. Apparently they still haven't gotten the hint that I stopped pumping a week and a half ago!  Hello boobs, this is your brains talking... you can stop now.. thanks.

So, my little Scarlett is officially on whole milk, and mommy is officially done pumping  (or pumping and dumping)!  Yay! Plus, her heart looks and sounds great, Violet's heart is great and there is lots to celebrate.


  1. Congrats to you on parting with "the Pump"! Scarlett & Violet both look perfect and you can rest easier knowing that both of your beautiful daughter's hearts are great! Enjoy the 2 months with no doctor's appointments, it's a totally new experience for you & Scarlett! Awesome news all the way around!

  2. Thanks for posting this! So glad Violet is OK. I shared this on 1in100 too - because we are scheduled to take BOTH of our older kids in for EKGs and cardio checks next week. I don't want to lose sleep any more...Our son Jack's ped heard a murmur several years back. Didn't think anything of it - but of course the context changes when you have a child with a defect! Keep you posted...Annamarie, 1in100

  3. I read you blog today and realized we have so much in common! I am also getting my 3 year old a cardio check because of the HLHS my 1 year old has-I'm paranoid, too! It's just so scary to think Abby could have a CHD and we wouldn't know. Hers won't be until June, though. I also pumped breastmilk since Lauren couldn't nurse, but I only did it for 6 months. I can't believe you did it for 1 year! Way to go! I was once pumping and a visitor came to the door and saw me through the window! I was so upset! I had so much breask milk frozen it took up almost the entire freezer in the basement. I was lucky, though, because we didn't know about the HLHS until the day after she was born and I got to nurse her for 1 whole day! I treasure that day so much! Lauren had an ng tube until 13 months when she just started drinking one day. What a miracle! Lauren is also small for her age, in the 10th percentile. She is 16 months and was born 10/24/08.

  4. Hi!
    I came across your blog today. I am happy to hear that everything is good with Violet and I hope all is well with Scarlett. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    Thanks so much and we look forward to reading more on your blog!
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info: , Page name: cassidylisa

  5. Wonderful news!!! So glad to hear it! BTW...if you are having any trouble drying up that milk I found that (and don't think I'm crazy) placing frozen cabbage leaves on them several times a day helps along w/drink sage tea. I just brewed sage leaves in hot water and drank that about 4 times a day. It dried my milk up in about 3 days. :)