Had her 2nd annual visit to the cardiologist today. She didn't get to see her regular doc, so it was a bit nerve wracking whether they would know her history. She did great though. The cardiologist said that her heart repair shows no sign of scar tissue, and it is wide and open. ;) Very good. Her small left ventricle is no longer small, in fact, she said that she is going to do some remeasures since she actually thinks it looks bigger. A good thing, but we don't want it to be too big either. I also talked to her about her being short of breath, and she reiterated what her ped said about her tonsils must be bigger since she is showing no signs of being labored with her heart condition. Her growth chart indicates that she is thriving, and as long as she can keep up with the big kids, there is no reason to keep her slowed down.
Now onto the scary stuff. Katelynn was born with having 2 leaflets in her aortic valve instead of the traditional 3. These leaflets open with each gush of blood through the valve, and then stop blood from leaking out. Her 1 year visit revealed this, and her dr assured me that most people do fine with the 2, instead of the 3. She had a small leak last year, and the small leak remains. She will always have the little leak, so they will monitor it. She said that at some point, the leaflets give way, (like in her adulthood, we are talking years from now) and at some point, she may need to have a valve replacement. GULP. But again, she said that we are talking years and years, Kate may be 50 years old by then. Something that yearly cardio visits must be scheduled for.
She was also a little curious why Kate was not checked in the nicu for chromosomal defects. She stated that it is pretty routine that kiddos get tested right after birth for this since they may carry other defects that won't be seen till much later. It concerned me she brought this up now. She wants her tested for Turner's syndrome since the 2 anomaly's come hand in hand with eachother. (the type of heart condition she had/has) So we will make an appointment with her ped in the new year for this to get done. She said that if she was a betting, she would say that Kate does NOT have it based on her features, but that there is a percent of kids that don't show the physical signs, but carry the genes. We would need to make sure she is well treated before she goes into puberty if in fact she does have. This bothers me that she wasn't tested since everyone said that just by her looks she did not appear the need to be tested. But I can understand where she is coming from, much better to know to be prepared.
All in all, good appointment. Very relieved that she is still okay.
2 comments:
sounds awesome, minus the not having all the proper testing done but she's a champ
Yay H! So glad to hear the good no, GREAT news! Sucky though about not being tested....just another thing to worry about as a mom...she will do great though!! Congrats on some good news!!
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