Aug. 9, 2012
Our second trip to Mott's Children's Hospital:
This trip was basically a follow up and a chance for us to get to meet the surgeon, Dr. Ohye who's skilled hands will be operating on our little baby girl.
During our first visit they had found that her ventricles in her brain were on the high end of normal (at 10) and this time they were measuring lower (good news). It was still hard for them to get good visuals on her entire brain, specifically looking at the corpus callosum, the midline of your brain that connects the two hemispheres (left and right) and it communicates and coordinates functions of the body. The corpus callosum transfers motor, sensory, and cognitive information between the brain hemispheres. The doctor who was looking at it could see the blood flow in the front part but not follow it back to the base of the brain, mainly because of the position she was in. They will keep an eye out on it and believe that it's ok and that there's no need to have an MRI done.
The other thing they found NOW was that here heart RHYTHM is irregular and concerning to the cardiologist. The bottom chamber, the pumping chamber (aka: right ventricle) is NOT firing in proper rhythm with the top chamber (aka: right atrium). The concerns are that it could cause what they call a heart block which has varying degrees, but with our baby having only "half a heart" it's a concern that must be watched closely. Here is a link to better explain heart block on a normal heart: Heart Block
So the pediatric cardiologist we saw there, Dr. Van Der Velde, strongly encouraged us to see our pediatric cardiologist back home in Evansville on a weekly basis to keep an eye on it to make sure it doesn't get any worse. On this day, the top chamber was beating at a normal 120 (+/-) beats per minute and the bottom chamber was only beating at 65 bpm. If it gets worse than that or other concerns arise from it then there is a good chance we will have to have a c-section earlier than our scheduled date. Otherwise, baby girl is growing well and is 2 lbs 2oz.
We did ask to speak with the genetic counselor in MI to see if she might know any more information regarding the abnormal duplication of chromosome 8 and she also said that there is no information on this particular type of duplication. So as far as that goes, it's still remains unknown the implications it could cause. (Frustration!!)
We LOVED Dr. Ohye and were so glad to meet him! He sat with us for at least an hour going over our baby's heart condition again with us, explaining that her heart isn't a straight forward classic case of HLHS. She has Hypoplastic Left Heart Syndrome (HLHS) but also has double outlet right ventricle (DORV) and a atrial septum defect (ASD). Then he went over what it is they do to make the heart work and function as "normal" as they can. He explained the"whys" and the "hows" on the different types of surgeries she will undergo and what they will be doing in each surgery and what it accomplishes. I wish I had been able to record it because he made it so clear to understand!
We will be heading back to MI on September 13th for another follow up!!
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