December visit: Weight gain was ok, but she had dropped off on her feeding and was eating even less than the previous month. He's concerned about the PDA causing increased pressure and other things and causing her heart to work too hard. Started her on Enalapril which is a blood pressure medicine to help decrease the pressure in her heart. Presented her case to the pediatric heart surgeons at Joe DiMaggio children's hospital to see if they recommended surgery now or later. Heard back yesterday and they think it would be beneficial for her to go ahead and have the PDA closed sooner rather than later. They're supposed to call sometime next week to schedule a time for January. They have a smaller device that they're using now on little ones that they plan to use for her as well as a smaller catheter that is more flexible. The dr. said that would be better for her due to her dextrocardia and abnormal heart pathways. The hospital doesn't get those until January, but he sounded like that's what they would be using. He thought it would be early January, but depending on scheduling and such I wonder if it would be mid to late January before her surgery would be scheduled. They would do it like a heart cath by threading a catheter up the femoral artery vs. going through her chest. He says it would be outpatient, but with her being so young, we would probably stay overnight. She was also in heart block the whole visit this time with her HR in the 70's.
From our perspective, Susannah is growing way too fast! She does not seem to be in any distress at all and is a very happy and smiley baby! She is close to sitting up on her own and gets up to her hands and knees and rocks back and forth. It won't be long before she'll be crawling! Her first tooth poked through today!! She's still doing pretty well sleeping through the night. She has started getting up once during the night either at 3am or 6am, but it's not every night.
5 months old!!
So sorry to hear about her heart. This sounds so stressful. Heart issues aside, she is doing awesome. She's already getting on hands and knees--and has a tooth poking through! JD is 6 months, doesn't even roll (he does weigh 21 pounds--must be hard, ha!), no sign of teeth, quit sleeping through the night and now wakes up 1x/every night, and gags on food and refuses bottles...but of course, he's happy anyway, so we are too.
ReplyDeleteI will pray for guidance for Sausanna's docs and for her precious little heart ,and for no pain from surgery, when it comes to that.