Coming Soon...Open Heart Surgery!

5:06 PM Posted In , , 18 Comments »
:(


Gabby had a follow up appointment today with her cardiologist. All looked well (they did an EKG) but unfortunately, her weight gain (or lack thereof) raised some concern. She is starting to fall off of her curve which suggests her heart is working a little too hard and she is burning all of the calories she is consuming and then some.


Though her EKG looked good, he decided to call in a sonographer to do an ECHO. The ECHO confirmed that though the holes are not getting larger, they're also not getting any smaller. Although, I am happy to report one did close, YAY! He says the others will not close on there own and he doesn't want her to fall off the chart anymore than she already has.


The fact that Gabby has been so alert and energized these past nine months has kinda sent me down a road of wishful thinking. I didn't want to go that route, but of course, I did. I psyched myself up and thought she probably wasn't going to need this surgery. No such luck though.


I have to admit, it will be nice to get this over with. And, I have a great feeling that once she has this surgery, she will achieve her milestones much quicker which will be really exciting. Of course, no mother wants to hear that her baby has to have open heart surgery, but I guess it's par for the course (well...our course, anyway).


Her cardiologist had us get a chest xray and he will be sending that, along with today's EKG and ECHO to UCSF (dude...that's a lot of acronyms). The doctors at UCSF will ultimately decide when to schedule her for surgery. Hopefully they will get back to our cardiologist in a timely manner so we can get this marked on the calendar.


I am surprisingly calm...for now. My biggest worry right now is how I will manage being in S.F. for however long we'll need to be there along with Cameron, school, etc... I think I need to go take a yoga class!
Anyway, that's the update! I'll continue to keep you all updated on what's going on. Hope everyone is having a fantastic week.
Ciao.

Anatomy of a princess heart.

7:00 AM Posted In , , , , , , 8 Comments »
I get a lot of questions about Gabby's heart and to be honest...uh, I really don't fully understand unless I have a picture in front of me so I thought I would explain that here!

I made a few diagrams with a picture of a normal heart next to a picture of one of her defects starting with the Atrial Septal Defect. This means there is a hole between the hearts two upper chambers. Gabby has two ASD's.
Sorry the pics are so small...I thought you would be able to click on them to enlarge them but that's not working for me. You still kinda get the picture!

Next is the Ventricular Septal Defect. This is a hole between the hearts two lower chambers.



Partial AV Canal Defect: There are two common types of atrioventricular canal defect — partial and complete. The partial form involves only the two upper chambers of the heart. The complete form allows blood to travel freely among all four chambers of the heart. Both types allow extra blood to circulate to the lungs. Ensuing problems overwork the heart and cause it to enlarge.
Atrioventricular canal defect is often associated with Down syndrome.

Persistent Left Superior Vena Cava...this isn't really an "issue" but she has this going on too...

Okay and now I just realized that I forgot to do a diagram for her PDA (Patent Ductus Arteriosus) so I'll just copy and paste about that:

Patent ductus arteriosus (PDA) is a heart problem that occurs soon after birth in some babies. In PDA, there is an abnormal circulation of blood between two of the major arteries near the heart. Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, which is an essential part of the fetal circulation. After birth, the vessel is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries.

So there you have it! The princess was among the 40-50% of babies with Down syndrome born with congenital heart defects. She is monitored very closely by her regular pediatrician as well as a pediatric cardiologist. In fact, we had an appointment today for a follow up EKG. Everything looked well. We are scheduled for another one in three months. To be honest, the more it get's put off, the more nervous I get. Of course I am terrified of my baby having open heart surgery, but at the same time, I just want her fixed.

Her cardiologist noted today that in the past seven weeks she has gained exactly one pound...no more, no less. This isn't great and it isn't horrible. We will have to continue to watch her closely through these winter months, especially. Gabby has qualified for Synagis which is a series of injections given monthly from November through April to help preven RSV. RSV is common in premature babies as well as babies with heart problems. Dr. Riverra told me today that if Gabby get's RSV and heart surgery is needed, it CANNOT be performed for at least two months after the onset of RSV. So, we were sent home with special instructions to be EXTREMELY careful around ill people. Everyone in my house HAS to get a flu shot. No way around it. It's going to be a stressful winter.

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