Why does the hole in her heart feel like it's in mine?

Back when we were still in the hospital, one of the nurses on our 2nd to last day there came in to check Reese's heart rate and said she thought she heard a murmur. Since this was before her DS diagnosis, they didn't link the two (since 1 out of every 2 babies with DS are born with some sort of heart defect) and put in for Reese to have an Echocardiogram. (learn more about an Echo here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004320/)

I didn't stress too much because the nurse and pediatrician assured me that babies are born with these all the time and they normally heal on their own. When the results came back, the on call pediatrician came in to go over them. She told me the murmur was very small, it should close within 2 months, and I really had nothing to worry about. This is also the same on call pediatrician who told me Reese may have Turner's syndrome, so it was no surprise when we had our second appointment with Dr. Vadala (the same day we received her DS diagnosis) and he explained that the hole wasn't as small as we had been told. He referred us to a cardiologist with Texas Children's and scheduled us an appointment as soon as possible to get their own Echo done. One week later we went to SugarLand to have her new Echo and chest x-rays done. The cardiologist there was awesome; she was so sweet and tried to give us the results without sugar coating them. She pulled out a tablet of paper that has a picture of a heart on it... I guess that's how they draw what's going on in your baby's heart and make it as clear as possible for us "non medical people" to understand. She started scratching out little sections and drew little holes in a few places. With every stroke of her pencil, I felt like she was drawing the holes in my heart. I kept my composure and didn't cry... I tried to keep as positive as possible because she hadn't said out loud if it was kind of bad, or really bad, yet. She explained that Reese has a Ventricular Septal Defect (VSD-http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002089/) and an Atrial Septal Defect (ASD-http://kidshealth.org/parent/medical/heart/asd.html).

Finding out Reese had Down Syndrome was one devastating blow... but you knew that it was something that she would LIVE with. Finding out your baby has tiny holes in her heart is a different kind of blow... because this means heart surgery, which means someone is going to cut your baby's chest open and operate on their tiny little heart, which (to an upset mother) means they may not LIVE. The doctor explained there is a chance for the holes to grow up on their own...but if they don't, then she'd have to have open heart surgery when she was 6 months old.

I know everyone keeps saying, "God only gives you what you can handle"... and I get what you're saying... but I have to disagree. A person can only handle so much, and I absolutely can NOT handle the thought of Reese's tiny heart being opened up. I believe God gives you what he knows will bring you to your knees and chose to turn your life over to him. That night I prayed harder than I've ever prayed before her heart will heal on it's own. You find yourself wishing it was you that had the defect. I would take all of it if Reese didn't have to have one ounce of pain.

The cardiologist referred us to the Texas Children's in The Woodlands so we wouldn't have to drive so far since we would be "regulars'' from here on out. We didn't get in with Dr. Wolfe (our new Cardiologist) for another two weeks. That appointment was very uplifting. He had a lot of optimism for Reese's heart. He said he can see the skin already starting to grow so he has faith that it will grow on it's own. He also lifted the "6 month old-heart surgery" rule and said as long as she's showing improvement, we wont do surgery....which I love the thought of. I also learned that among the 50% rate of babies with DS born with heart defects, a lot of them have very serious defects that require major surgery and that Reese's defect is on the mild side. Like I've said all along, we're very lucky and it could always be worse.

We had a follow up appointment last week with Dr. Wolfe. He walked in the room and said very happily, "somebody's getting fat!'' At this point in Reese's little life, any news that isn't bad news...is GREAT news. He explained baby's with these defects have a hard time eating and she is apparently NOT having this problem. She's grown a pound almost ever doctors visit we've had... I just love my little chunker. He also said the sound of the murmur in the stethoscope is getting louder which is good because if you think of a musical instrument, the smaller the hole, the  louder the sound will project.

So here we are today... just waiting and hoping to see if it will close on it's own. She takes a diuretic daily that decreases the amount of fluid in her lungs caused by the extra work her heart is having to do. It causes for some VERY full diapers, but I'll do whatever the doctor tells me to do if it means she may not have to have surgery.

Now that I've caught you all up on the past two months of Reese's life, I can start writing updates...hopefully they're all positive from here on out!... and if they aren't, then we'll get through them with a little help from our friends ;-)

Two of my fav's

Such a happy girl!

Sitting up like a big girl with mama