Anatomy of a princess heart.
7:00 AM Posted In asd , down syndrome , gabby , heart problems , pda , persistent LSVC , vsd 8 Comments »
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.




8 comments:
I pray for your little princess every night, modern medicine is a miracle these days. My uncle is a heart surgeon and I have so much confidence in the skills they provide cardiologists everywhere...I know your love and support for Gabby will bring her to a quick recovery whenever she does have to have the surgery!
Sheree,
As scary as it may be, you have to believe the body is amazing and can perform miracles. Natasha has a PDA and a huge VSD (huge according to the cardiologist). We first saw the cardiologist in Dec 07. He said we would need to have open heart surgery by her 1st b-day (Sept 08) to close it up or it'll cause damage to her heart and lungs. He didn't think it would ever close on it's own. We go back several more times, the last time being in April. At this appt, he sees a piece of tissue covering her huge hole!!! It's not completely sealed off yet so blood is still leaking through. I have researched natural methods to help her body heal (supplements and craniosacral therapy). Our next appt is in Nov. If you want to chat more about it let me know and I'll give you my contact info.
Lisa
Why didn't you post this yesterday? I was studying for my cardiology exam! LOL.
That's a lot for such a little lady! She's doing great, though, blowing everyone out of the water already. Hopefully she'll do the same with this heart stuff.
That is wonderful that you can get the shots! My friend had to FIGHT tooth and nail with her insurance company to get them for her preemie.
I know you worry about her. Sounds like she has a great team of doctors looking out for her!
Wow, your strength truly amazes me Ree! I know Gabby will have a wonderful life, as she is surrounded by such an amazing and supportive family. I have to admit, it is all still confusing to me however, I will be sure to keep you all in my prayers, as I have been. I cant wait to see how you dress Gabby for the holidays, she is always so fashionable!!
You need to start buying Purell in bulk!
Glad to read all the info about Gabby's heart. She's already such a strong little girl.
Ok, cause I am horrible at remembering. She hasn't had surgery for AVCanal yet? I thought they always had it done by 3 months of age now?
nope not yet...it's a partical one so maybe it's not so urgent?
I don't know. I wish I could get a rough estimate of "when" but they won't give me that much. :(
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