Leaky Valve : (

Well, the cardiologist appointment last week had good news and bad news. But for me, it was more like bad news and more bad news. The “good” news is that she gained weight. She now weighs 17 pounds 2 ounces. According to the cardiologist office, she gained 1 lb 3oz since her last visit. She is still in the zero percentile for growth, so I was still disappointed. The cardiologist said she was pleased with her weight gain, because at least she is gaining.

She tried to make me feel better by saying Scarlett went from the negative 5th percentile to the negative 3rd percentile. I just wish she was on the growth chart again. I was not happy about her weight gain, because when I took her for her 1 year check up, she weighed 17 pounds. So, to me she only gained 2 ounces in 2 months. But maybe I’m mistaken. : (

The other bad news is that her echocardiogram showed she has a leaky valve. The homograft, (pulmonary valve from a cadaver that they implanted in October) is showing some regurgitation backward into the right ventricle. Thereby making her right ventricle work overtime to try to pump that blood back up the homograft.

Because this excess (leaky) blood makes the right ventricle work harder than normal, over time it adds extra pressure on the right ventricle, reducing its ability to pump blood (a condition called right-sided heart failure). Mind you, this is over time. But what we don't now is HOW MUCH TIME. Are we talking weeks? or are we talking months?  I was thinking since her surgery was in October, that I had at least 2-4 years before I heard the words 'leaky valve'. So, yes, I was a little surprised to hear those words this soon after surgery, it's only been 6 months.

I know leaky valves are normal and expected for someone with her heart condition, but it really threw me for a loop. : (  I'm not ready to send her back to the hospital yet.  Dr. Pophal said that he may be able to treat the leaky valve with medicine...but in the end, he did an EKG (in addition to the echocardiogram), and they want to see her back in another month for another echo.
I tried to act calm and cool about it when they told me. I asked if this was a new finding, or if it was leaky at her last echo. Unfortunately, they couldn’t find her last echocardiogram to compare it to, so I was secretly FREAKING OUT inside.

I'm not gonna lie. I'm very worried about it. I know I probably shouldn't be, but when you live with a child that skirts the fine line between life and death, it is very hard not to be worried. The fact that I'm a complete worry wart doesn't help the situation either. Today Scarlett wouldn't eat and she was unordinarily sleepy. I immediately got worried that it's her heart. It could be nothing, but now that I know she has a leaky valve, it's on my mind that any unusual behavior can be heart related.

I will feel better after our next cardiologist appointment. For now, Scarlett is still doing well. She's acting "normal", and she seems happy. Her appetite has decreased, but maybe it's just because she's teething. I still need to buy a new digital camera, and when I do, I'll post more current pics. Thanks for reading.

Growing Up

I can hardly believe that my little baby is already going to be 15 months old. She is doing so awesome. She's practically running now. She is drinking from a sippy cup, wearing size 9-months clothes, eating big people food, dancing when she hears music, and trying desperately to talk.

It's been almost two months since her last cardiologist visit. She is going for a routine echocardiogram and clinic appointment tomorrow. This will be our first 'official' visit with Dr. Pophal. Beth will be there too, but it will probably be the last time she sees Beth, because she has officially transitioned from the "high risk" category to "normal" category, and only needs to be monitored every 2 months. Maybe at tomorrow's visit they'll say that she can go longer in between visits?? Like 3 or 4 months?  She seems to be doing so fantastic. Such a blessing.

I broke my camera somehow on Easter Sunday. These are some of the last pictures I took. As soon as funds are available, I'll buy a new one, so that I can start snapping  and posting new pics of my little princess.

Other exciting news to date: We moved!! If you've been reading my posts since July of last year, you'll know that I was house hunting for 8 months. I finally found our dream home in Glendale, AZ very close to Cardinal Stadium also known as Westgate.  We moved in April 5th and I love it! The neighborhood is pristine and beautiful. Very family friendly. Beautifully landscaped and maintained front yards, nearby parks, and best of all, Scarlett's aunt and cousins are within walking distance (6 houses down the sidewalk!).  I will post more pictures later this week, and definitely more when I get a new camera.

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!

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:

http://www.stjosephs-phx.org/Medical_Services/Congenital_Heart_Center/203531

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

Ethan's Run Today

This morning Violet, Scarlett and I woke up and drove 40 miles to east Mesa to attend "Ethan's Run Hope For Heart Defects". There was quite a good turn out. I was happy to see so many people there braving the brisk weather to support my friend Heidi and the cause in general.

I was suprised that Heidi actually ran in the 10K! (amazing woman...). Many of the heartmoms walked the 1-mile "fun run". Me and two other heartmoms just walked the 1 mile fun-run.... and truthfully we kinda cheated a little and probably only walked half a mile (shhh! don't tell).  It was a lot of fun though. and thank God the weather was agreeable [meaning it didn't rain until the event was almost over!]

ABC 15 [local news channel] interviewed Heidi on Thursday {Ethan's would-be 1st birthday}, and it aired on Friday. Here is a link to the video and the story:

http://www.abc15.com/news/local/story/Mom-creates-Ethan-s-Run-to-help-families-with/mTMOVcX0GUaicWvYRVRgpg.cspx

Here are some pics I took this morning after the race before the weather took a turn for the worse.

 

It was great to see so many familiar faces and see the heartbabies. Next week we get to do it all over again for the American Heart Association's annual "Heart Walk" which will take place next Saturday at Tempe Town Lake.

Baby's First Birthday

Today is Scarlett's Birthday. She did it! She survived her first year of life which actually says a lot. Last week was "Congenital Heart Defect Awareness Week". On my facebook page I posted facts about CHD all week. One of the facts that I listed was that each year 40,000 babies are born in the U.S.A. with a CHD. Of those 4,000 will not live to see their first birthday.  Scarlett has defied the odds. She is a fighter. She is a survivor.

Two open heart surgeries, 2 cat scans, 1 angiogram, 4 blood transfusions, countless chest xrays, echocardiograms, EKGs, needle pricks (for blood draws and shots), heart medications, feeding tubes, & cardiologist visits, she is alive and doing fantastic. If you saw her, you would never know the harrowing year she's been through. She just looks like a happy, healthy little baby.

I wish it were true. I wish she didn't have to have any more surgeries. I wish she didn't have to suffer anymore, but at the same time.... I am just to thankful and happy that I have her in my life. Sometimes I hear or read on other heartmom blogs "I wouldn't have it any other way"...[meaning that they are pround to be a heartmom, or they're proud of their heartbaby], but I guess I'm a little more selfish.

I wish that Scarlett was healthy. If I had my choice... I would chose for her NOT to have a heart defect. I hate to see my baby suffer. Yes, I am proud to be a heartmom, and yes I am a very strong advocate for heartbabies and CHD Awareness, but if I had the choice...I think I wish that CHDs didn't exist. But God chose me. God chose Scarlett. and there is a reason for everything under heaven.

There are tears in my eyes right now thinking about the first year of Scarlett's life. She's been through so much, and yet she is so calm and happy and perfect. My poor little daughter has endured more in her first year of life than most of us will ever have to suffer in a lifetime. She is so brave. She is my inspiration and my hero. Sometimes I just look at her and I start crying. She is such a tough little girl.

Happy Birthday Baby Scarlett. God Bless you and keep you healthy for many more birthdays to come. I love you baby bear.