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 9, 2010

Look Who's Walking!

Well, I'd have to say it's official. Scarlett is walking! The babysitter said that all day today, she's been walking from the couch to the playhouse, from the chair to the table, and all over the house in little 6-7 step spurts. She immediately falls to her little bum after 6-7 steps, but she gets right back up and trys again. She's doing great walking along the walls, couches, tables. My little trooper. I can't believe after all she's been through, she can still pull herself up and let go and walk.

She's such a big girl. She now has 5 teeth on the top and 4 teeth on the bottom. I'm introducing new foods everyday. Last week, she tried spaghetti for the first time.

Scarlett is a "big girl" now. She's eating big girl food. Her first time eating spaghetti, she mostly played with her food, but I think she got one or two bites in after all was said and done. She eats taquitos, crackers, yogurt, grilled cheese, chicken nuggets, french fries, green beans, peas, Cheez-Its, Nutragrain bars, and of course mommy's potatoes. I gave her apple for the first time last week too. She's still underweight, and needs extra calories, but she's a GREAT eater (unlike her sister). My little Scarlett will try anything.  Soft, crunchy, wet, dry,...finger foods... or being spoon fed... she loves to eat. : )  Such a blessing. Now if only I could get her to gain some weight!

Beth (Scarlett's cardiologist) sent us some BeneCalorie and Kids Essentials. I need to introduce these supplements to her diet.  I guess we'll see how it works. So far, she's taking pretty nicely to the whole milk (from breastmill). It's been about 2 weeks already. She has a pediatrician appointment next week for her 1-year check-up and monthly synagist shot. I'm keeping my fingers crossed that she gains some weight. I'll keep you posted!

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.

Cardiologist Appt Today

Today I take Scarlett to the cardiologist's office for a routine follow-up appointment. Can you believe it's been 8 weeks since her last appointment? I can't. Last year I was in the office every 2-3 weeks...pretty much the entire year. When Beth (Scarlett's cardiologist) told me in January that she'd see me in 8 weeks I was in disbelief. Wow... I can really go two months in between appointments? That's awesome.

That means that Scarlett is doing great (heart-wise) and only needs to be monitored 6 times a year. That's great. Scarlett is still trying her best to walk unassisted. She took about 6 steps on her own on her birthday, but she's still slow to take off. That's okay, I like watching her crawl around anyway. It reminds me she's still a baby.

**NEWS FLASH** Exciting news for heart parents!!! St. Joseph's Hospital is working toward opening the first pediatric heart transplant program in Phoenix, Arizona. Up until now when a local baby/child was in congestive heart failure (requiring a transplant), they had to literally move out of state and go to Boston or Los Angeles for several months while their child awaited a heart transplant. But I just read tonight that this program will soon be available in Phoenix!! To be performed by Scarlett's team of pediatric cardiac surgeons. This is awesome. Of course I pray that this will never be an issue for my baby, but I am relieved that if it did ever come to that, we won't be further burdened with moving out-of-state. Here is an article about it:

I will post how her cardiologist visit went tomorrow. I'm hoping for more weight gain! Let's keep our fingers crossed.