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.

Sunday, September 26, 2010

Crystal Ball

Sometimes I wish I had a crystal ball. Not because I'm selfish I want to forsee the winning lottery numbers (although that would be nice too),... Not because I want a fortune teller to tell me what happens in the future as far as riches, wealth, career, or to see my fortune.. but because, I wish I knew that Scarlett was going to be okay for the next 6 months.

It has been 4 months since Dr. Pophal told me that she has a leaky heart valve. I wish I had known 4 months ago that she will be okay and not to stress or worry or freak out about small things like sweating or blue fingers and lips.

Speaking of blue fingers and lips... The other day my mom and the babysitter fed Scarlett a blue popscicle. Which consequently turned Scarlett's lips and fingers blue. I came home from work and noticed that her hands were blue but I dismissed it because it was her palms and I figured she got ahold of a blue marker.   But then when I was changing her diaper I noticed a slight blue hue around her lips. A blue moustache haze. and I immediately freaked out and started panicking. Because I know that blue moustache means not nough oxygen to her blood.. which means something's wrong. So I grabbed her blue hands and flipped them over and analyzed her fingernail beds in fear and panic. They were pink...and normal.

My stress was alleviated. I rolled my eyes and deduced that SOMEONE gave her a blue popscicle or something like a blue popscicle. Sure enouch my mom fessed up. I posted on facebook that night "The fastest way to give this heartmom a panic attack is to feed my baby a blue popscicle and not tell me!"  I hereby decree that blue popscicles are banned from my home!! ; )

But seriously... I wish I had a crystal ball that I could look into and know that she will be okay until February 2011. Or even  April or May 2011..., so that I wouldn't freak out about every little thing that I think is a sign of heart failure. I guess that is still kind of selfish. It's not necessarily knowing the lottery numbers, but it is giving me peace of mind that she is going to be okay for the next 6 months, so that I can rest easy.  That's all I ask. Just to know when her next surgery will be so I can relax a little. Then again, of course I wish that she never had to have another surgery ever again.

To dream the impossible dream. That she will be okay. That she'll never have to be cut open again, that her heart will repair itself, that she won't need another surgery, CT scan, Heart Cath or MRI..To imagine and wish, and hope and pray and dream that she could be a healthy normal child. That she didn't have wires holding her chest shut. That she didn't have regular monthly cardiologist visits, regular echocardiograms. That she'll live to a ripe old age and never have to worry about her limitations and never have to worry, and wonder and fear "when is the next surgery?", "How long will this one last?"

So, yes, I truly wish I had a crystal ball that could tell me how long she has 'until the next one'. Because living in constant fear of the unknown is not a place for anyone to be. I don't wish this anxiety and fear on my worst enemy... okay... maybe my WORST enemy, but even then, why would I want anyone to live like this?  Even now, peole ask me "How's the baby doing" [obviously these people don't read my blog!], and I say, "Well, she's doing okay, but she has a leaky heart valve and might have to have surgery in the next 6-8 months", then my voice gets shaky, and tears well up in my eyes, and I say "I'm sorry, I get emotional when I start talking about it"... then sure enough I start crying. I'm such a pansy.

Well, of course, I don't have crystal ball, and last time I checked, they're not for sale on Craigslist. So, I'm left to just take each day as it comes and just treasure the time I have with Scarlett because she is my little miracle baby and heart warrior. She is a survivor, and she is my hero.

Saturday, September 4, 2010

Cardiologist Update

I took Scarlett to the cardiologist Thursday and had good news for a change. Either that, or I'm just looking on the bright side that it wasn't *bad* news again. Dr. Pophal said that her overall heart function is the same. Meaning, it is not better, but it is not worse either. Status quo. She still has the leak, and there is still pressure on her right ventricle, but for now, she is still gaining weight (although VERY GRADUALLY), and she is not in any immediate danger or threat of surgery in the near future. Dr. P said that she probably has at least 6 months..... Which believe it or not was a huge relief.

Because after that botched MRI, I wasn't sure if we were looking at surgery for Christmas or right after New Year's. Seeing as her heart went from no leak to 'moderate' leak in 5 months, I guess I figured it would go from moderate to severe in another 5 months. But as it looks, six months from now is end of February/beginning of March which means it would be at least 10 months from the day I heard "she has a leak".

At the same time, even though she probably won't need another surgery between now and March, they still want to see her every month for weight checks, and echos to check on the leak and pressure. I can handle that. Dr. Pophal said that we need to get her to gain some weight before her next surgery.  Which brings me to my next topic.

Scarlett weighed approximately 18 pounds 4 ounces. She only gained 4 ounces in a month, which is still progress, but very minimal progress. We talked about her nutritian, and about changing game plans to try to get her to eat. Dr. Pophal is going to put her on a heart medication called Degoxin, which will help strengthen her heart and make her feel better (& hopefully increase her appetite).

 I barely gave her her first dose on Friday night, so we'll see how it goes.