Tuesday, June 19, 2012

Pediatric Cardiologist Appointment Yesterday

We had our second visit with the Pediatric Cardiologist yesterday and he is wonderful (great doctor, great bedside manner, and very nice).  He did another fetal echo (ultrasound of her heart) and he did that prior on April 30th.  He thinks that everything still looks the same in terms to appearing like Hypoplastic Left Heart Syndrome.  She wasn't in the best position for the ultrasound but he could tell that her heart is growing and the function is as good as can be with her heart condition.  They will start medicine for her heart very quickly after birth and we will not know how long she can stay with me after delivery until she is here.  When I say "how long she can stay"- I mean do we get to look at her as they rush her off or do we get to hold her for a few minutes.  We know that she will not stay in our room and she will be taken over to the children's hospital very quickly after birth.  This is very heart breaking because my other kids stayed in the room with me almost the whole time after birth so this will be very different.  She will have a geneticist, neonatologist (NICU pediatrician), pediatric cardiologist, pediatric cardiothoracic surgeons, and multiple other people caring for her after birth.


They will be doing ultrasound of her brain, heart, other organs, blood tests, scans of all sorts, etc after birth.  It sounds like we can expect her to be in the NICU for at least 4 weeks but that all depends upon how she is doing.  The first surgery at 7 days old sounds like the hardest because she is so little and fragile.  We just don't know how the Chromosome 17 will effect her or impact her heart (or other issues).  


He did mention that they have only been doing the surgery around 25-30 years so they really don't know what the future holds for everyone that has the three heart surgeries past that point.  He said that some people do very well, some don't, and some need heart transplants (and who knows.. they may all eventually need heart transplants).    


So we go next week to meet the heart surgeons for the first time, tour the NICU, tour the hospital where we will deliver, meet with the high risk doctor again (another ultrasound), and meet the NICU pediatricians for the first time too.  So next week will be crazy, busy, and emotional.  


I still have my good moments/ bad moments and good days/ bad days.  We just don't know what the future holds and that is the scariest part.  So things are stable "per se" for now and no new devastating news but it is also not good at the same time because she still has her heart condition with the 3 open heart surgeries and this genetic condition (and no one knows what that outcome will be).  


Please don't take it personal if I have not written you back, called you, etc as I am overwhelmed with everything right now.  I still love you all and I will slowly but surely get back with you.  Thank you for all of your well wishes, support, and prayers!  Don't stop.. as we have up to 9 weeks left until she is here.  :)  

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