Just a few days ago Judah celebrated his 5 month birthday! He got new outfits and a Bumbo chair from his aunt Rachel! Judah is growing up so quickly, he is now up to 24″ long, and weighs over 13 pounds. He is starting to grow out of some of his (our) favorite outfits, but that means we get to buy him new, even cuter outfits.
This week Judah has also started getting real tub baths, and although a little unsure at first, he is warming up to his bathtime and loves to play and splash in the water. He also had a visit from a developmental therapist, who tested him along a number of categories, and he scored very high on just about each one, ranking 90% and higher for where he should be at his age. The therapist, as well as all of our doctors and nurses, tell us that Judah is progressing so well developmentally and socially because of how involved we as parents are, and how much we work with him ourselves.
and now to continue with the story of little Judah’s heart. The past several days had been a lot of waiting for us, as one week ago there was a meeting of many of our doctors, including the cardiologists, surgical team, and others, to discuss the plan of action for our little Wonder Bear. Judah is experiencing somewhat frequent arrhythmias, atrial flutter, pulmonary hypertension, stenosis, and some respiratory difficulties, though you’d never know from looking at his giant cheeks and smiling face. The doctors told us that Judah has been one of their most difficult cases, but also one of their cutest. The plan, as discussed in their meeting, will be for Judah to have another open heart surgery, most likely sometime at the beginning of March.
The doctors discussed several key issues and how they plan to fix them. When Judah was born he had both an ASD (atrial septal defect) and a VSD (ventricular septal defect), basically holes between the chambers of the heart. The VSD was patched in his first open heart surgery, and in many babies with one the ASD closes on its own. The doctors feel it would be best to go ahead and patch the ASD now if Judah will already be in for surgery. Judah experiences some irregular heart rhythms and rates, and is on a number of heart medications and anti-arrhythmic drugs. The doctors would like to get Judah off these drugs, and attempt to fix the irregular rhythms by performing a procedure called a bi-atrial maze. This procedure will try to fix the arrhythmias by changing the electrical patterns within the heart so it will beat normally. However, since this procedure changes the electrical impulses, Judah will require a pacemaker to be implanted. The cath diagnostic and scans of Judah’s heart have also shown that the conduit that was implanted in his heart during his first surgery will need to be replaced, and a valve will need to be placed as well, to make sure the blood in his heart continues to flow to the right chambers.
Until the team is ready for surgery, we expect that Judah will stay at the Children’s Home, where he had been since Monday Feb 4th, but yesterday some oxygen de-saturation and crazy heart rates yet again brought us back to being readmitted into the CICU at the Hospital. We are not sure how long we will be here, if we will make it back to the Children’s Home or if Judah is to remain in the CICU until he can get in for surgery. For now Judah remains cute and smiley, and we remain by his side.