The Phamily Blog

I scheduled an appointment with Gabby's cardiologist for this past Tuesday just to ask some questions and try and set my mind at ease just a smidge. I have been pretty nonchalant about all of this but being in that doctors office, asking those questions...it kinda hit me. In twenty days I have to hand over my sweet, sweet baby. I can't even begin to describe the ways in which she has touched my heart.

I know all children are a blessing to their parents but this is different. Again...there are no words to explain it, so I'm not even about to try.

Anyway, so there I sat with my notepaper with the scribbled list of questions I had for Dr. Rivera:

*okay so which holes are being repaired again?

Two ASD's (atrial septal defect), one VSD (ventricular septal defect), and a leaky Mitral Valve.

*how do they repair the holes? Sutures? Patch?

They patch the holes. Dr. Rivera then grabbed a specimen container in which he kept some sample patches. They looked like white cloth bandages...weird!

*Recovery?

(this is where I got teary eyed and scared)

Dr. Rivera suddenly took a more serious, somber tone.

"You should know that seeing Gabby following surgery will be very difficult for you. (GULP)

She will have one tube down her throat to help her breathe. There will be a tube down her nose for feeding. She will have a catheter. She will have four small tubes in her abdomen to help drain fluid. She will have an I.V. Her scar will be quite large...probably around 5 or 6 inches long down the center of her chest."

Bring on the water works! Ugh. This sucks.

I don't know why it didn't hit me until then. I mean...I knew this was going to be a serious procedure. I think I must have been in denial until that moment. My cheeriness I had when I walked into the office had quickly faded. I was sad for my baby.

There is one question I was NOT about to ask. Call it denial, I don't care...I wasn't going there. Still, Dr. Rivera asked "is there anything else you'd like to ask me?" I shook my head no. "Nothing?!"

Nope.

"You know, I can't pretend like I know what you're going through with all of this because I have never had to go through it myself but I would like you to know that in all of my years of doing this...I have NEVER lost a patient."

Really? (BIG sigh of relief)

"Well, no...I take that back...I did lose one baby but it was right at birth and I knew before the baby was even born that he probably wasn't going to survive...this baby was in BAD shape."

Apparently that was supposed to make me feel better...didn't really work though. Still, I am grateful that he has seen only one death thus far.

Dr. Rivera continued and told me that he has researched these surgeons thouroughly and has complete faith in their abilities. "Even in such involved procedures such as Gabby's, everything always turns out well."

"Oh, so Gabby's procedure is fairly involved?" (Dumb question right? Is there such a thing as an open heart surgery that is not fairly invloved? I don't think so.)

"Yeah...I'd say so, but honestly, everything is going to be fine."

I think I finally let out a huge sigh at this point. He made me feel a lot better and I do have complete faith that everything will go smoothly. Still, I had one more question before walking out of his office.

*We had planned a trip to Hawaii exactly three months after her surgery? Be honest doc...is it a bad idea?

"It'll be fine, just one thing though... you need to MAKE SURE you bring your cardiologist with you." (wink)



So there you have it. Everyday closer to June 24th brings a deeper feeling of uneasiness. I'm ready to be done with this.

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.