Second Meeting with Pediatric Cardiologist

August 21, 2014

Today we met with another cardiologist from Lurie Children's Hospital Heart Center for our second echocardiogram.  As expected, it took a while, but it went well and she was able to get a better view of the heart than they were able to last month.  Now that we were over the initial shock of all of this, we were able to actually ask coherent questions and understand the answers that were given to us.  Here is a rundown of what we learned today: the baby is 100% fine right now and the pregnancy is normal.  There will be no special procedures during labor and the birth will occur normally.  After delivery, she will be moved cardiac care unit at Lurie Children's Hospitalfor assessment and monitoring.  She will be a true Cardiac Kid.  Go Browns.  At some point soon after birth, they will give her another echo that will provide a clearer picture of how her heart is looking.  This will lead to one of two options.  1.) The pulmonary valve will be constricted and she will need a shunt put in.  2.) The valve will be open enough to where she will not need that initial surgery.  Either way, it looks like a week or two in the hospital for her before she can come home. At some time, most likely between 4 and 6 months later, she will need to have open heart surgery on the pulmonary valve to expand it's capacity to pump blood to the lungs, as well as have the VSD (hole in her heart) closed.  This will be another couple of weeks in the hospital as well.  The actual time frame for the surgery will not be determined until it is time to have the surgery.  She will be going to the doctor every 2-3 weeks for the beginning of her life.  They will be monitoring the amount of oxygen in her blood; her development; and weight.  We will also be keeping the doctors informed if she ever becomes a "blue baby" or has a "tet spell" (when the blue baby symptoms do not dissipate after she finishes crying).  "Blue baby" does not actually mean she turns into a smurf, her lips may turn a little purple, but it is not as extreme as the name leads you to believe. In any case, she will have to be monitored closely at home. When they complete the second surgery, life should become fairly normal.  She will recover in a few weeks and we will just need to keep an eye on her while going in for regular visits to the cardiologist. Surgery will then be required in her early teen years to put an actual replacement valve in (the first full surgery they expand the valve).  They need to wait until then so they can insert an adult size valve.  They currently have a way to go in through a vein with a stent and put the replacement valve in without requiring open heart surgery.  However, it currently does not work if done on the first true replacement valve as the expanded valve cannot handle the pressure from the stent.  The cardiologist stated they have made amazing strides in the last 5 years on this type of surgery, so we are optimistic that by the time BabySchu2 needs the surgery in her teen years she will not require open heart surgery.  The quality of the valves has also come a long way, so they are confident that this teenage years surgery should be the last.

 

 

*Originally posted to our family blog.

 

 

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