Jade Evelyn (2008)

My daughter was diagnosed with a murmur at two weeks, and then around one month she was diagnosed with a VSD and PS. At the time the doctor said they might correct themselves, but at her next appointment he said it looked like the PS was getting a little worse and the "if" became "when."

She's 3 months old now and has always had nursing issues but lately I am lucky if I can get her to nurse more than 2-5 minutes tops while awake. Most of her nursing is done while she's asleep and can't fight me, which, of course, means very little sleep for me, but it's worth it.

She's finally gaining rather decently—not because she's eating any better, but just because I'm feeding her little by little steadily over each 24 hours and taking supplements to richen my breast milk.

She had thrush for 2 months and we suspected reflux, but a recent upper GI came back negative for reflux and the thrush is finally gone (Hallelujah!!), so now we're left with heart issues as the reason she doesn't eat well at all. She refuses a bottle, so any supplementation with formula has to be done by force, which is horrible for both of us. She's gone from the 40th percentile to weight to the 5th in just 3 months.

I recently talked with the cardiologist and he said if she's having this much trouble nursing and the GI came back showing no reflux, in his mind it's time to go ahead and do the repairs—possibly as early as the middle of September. One thing he mentioned looking for (but not having seen yet) was her liver to begin to enlarge, which could signal congestive heart failure.

I also got the results of her failure to thrive blood panel from the pediatrician yesterday. Apparently her liver test results came back abnormal, which has me concerned, in light of my conversation with the cardiologist and what he said about her liver, but we'll see what the cardiologist says when we see him Tuesday.

October 2006 Update

Jade's surgery has now been schedule for October 17th, 2006.

August 2008 Update

Such a lot has happened since my last update.

Jade's surgery scheduled for October of 2006 had to be rescheduled due to a cold.  Then, at the last minute, they decided to do a diagnostic cath on the rescheduled date, since one hadn't been done yet.  Now, remember, up to  this point we'd been told that surgery was an inevitability.  So imagine our surprise when they came in and told us that she most likely wouldn't need surgery at all. Apparently, in the weeks between her surgery referral and the cath, the VSD had closed to the point that surgery was no longer necessary.  The doctors were amazed and haven't seen anything like it.  Furthering their amazement is the fact that the cath showed that the original size of her defect was actually much larger than they'd realized - it was the size of her aorta.

It took a while to really sink in, but we were so thankful.  Her eating improved greatly, and while she's still an itty bitty thing at age two,  at least we've ruled out it being heart related.  She's a very healthy, EXTREMELY active two-year old. She does still have some anomalous muscle bundles that are forming a double chambered right ventricle, which the doctor wants to keep an eye on, but the only reason she'd need surgery at this point is if those bundles begin to grow together and  begin raising the pressure in her right ventricle.