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Sep 12, 2017 Latest post:
Oct 11, 2017
August was born on July 6, 2017 via induction due to IUGR. He weighed just over 5 lbs. Right away I noticed that his color was bad and he was immediately placed under a warmer to get his body temp up. It was during this time that a nurse first heard a heart murmur. He had his first echocardiogram done that day and his second the following day. Both confirmed that he has an ASD, a PDA, and branch pulmonary stenosis. We were admitted to the NICU at this time due him being unable to regulate his body temperature and poor feeding but after a couple of days, he improved and we were able to go home.
Not long after, we received a call that revealed that his T-cell counts were abnormal from the newborn screening. We followed up the following week at Lurie's children's hospital in Chicago (about 2 1/2 hours away from home) with an immunologist who ran some tests to rule out a couple of syndromes that could have been associated with his specific heart defects (that were known at the time) and the result of the T-cell count finding.
The following day we followed up with his cardiologist in Peoria, IL. It was at this time that they repeated an echo and were concerned with the possibility of a coarctation of the aorta and suprapulmonary valve stenosis. Both of these things coupled with his already known heart defects were huge red flags when they doctor also saw that his O2 stats were so low (at the time, high 70s-low 80s were normal). They admitted us again and because of the complexity of all issues, didn't come up with a plan other than they hoped he would grow some before the need for a surgery would arise. We went home on oxygen with the idea that we would see cardio every week-2 weeks.
At our last cardiologist appointment, I just did not feel great in my own gut about what was said and so last Thursday (September 7, 2017), after I had seen some feeding changes, breathing changes, color changes in August the week before, we were so thankful that we had already scheduled a follow up appointment at Lurie's in Chicago with a cardiologist who is a friend of a friend's. And that is what has brought us to our most current update....
While here, they confirmed a coarc and took August to the cath lab in hopes of stenting it to relieve pressure off of his overworked heart. Currently, it is very very tired and weak. During the cath they realized that all 4 blood pressures are consistently too high and that the coarc itself was not severe enough to have caused such severe and quick damage to his heart. So they did not do a stent at the time and instead took a better look at the renal arteries to see if they, too, were potentially small.
Between a lot of this testing they have also done some genetic screening to test for things such as Williams syndrome and DiGeorge syndrome. An entire microanalysis was done and was negative. However, according to the results of the cath (showing that his renal arteries are in fact small), genetics will be brought back on board to begin more testing.