Monday, March 14, 2011 3:20 PM, CDT
The last week was a somewhat eventful week for Anastasia, which included an unscheduled trip to see the cardiologist followed by lots of tests (EKG, Echo, Chest X-ray, blood work). She has had a difficult time tolerating the medication, and was throwing up every 12 hours (and we are not talking spit up, we are talking emptying the contents of her stomach throw up) and was very sleepy and lethargic.
Most parents would be jumping for joy that their 8 week old was already sleeping through the night. Me, not so much! It is really difficult to get her to eat if you have to wake her up, and eating is our top priority at the moment. The cardiologist mentioned that we might need to discuss a feeding tube (she had only gained 3 ozs in 10 days), but then said if we were going to go that route that he might go ahead and speak to the surgeon to discuss the possibility of just going forward with the VSD repair sooner rather than later. SCARY! I really want her to be able to wait until she is a safer weight before having the surgery, but I guess it is a balancing act. They reduced her dose of Digoxin so I am hopeful that she will be able to tolerate the new does which in turn will help her heart work better; therefore giving her more energy to feed. It’s frightening that something as simple as sucking on a bottle wears her out so much. It’s hard to believe how quickly she seems to be deteriorating. She has gone from eating 21-24 ozs a day down to 14-17 ozs a day.
I guess we are just holding tight to see how she does this week. I feel like we are in really good hands with Dr. Fish and the Vandy team and they are actively following her progress (for instance they wanted me to call them today to report her feeding and diaper totals over the weekend). Word on the street is that Dr. Fish is the best pediatric cardiologist in town so that gives me some peace of mind. In other news, my mom, sister, niece and nephew are on their way to Nashville. Yippee!! They are driving from Dallas so they won’t be here until Tuesday, but I am SOOO excited!!
That’s all for now! Prayers for Anastasia are always welcome!!
Tuesday, March 1, 2011 10:34 PM, CST
Anastasia got the once over by the Cardiologist today. I am not sure why I was taken so off guard, but for some reason I was not really expecting that she would already be showing signs of her heart condition, but apparently she is. According to the doc most babies start to show signs between 6-8 weeks, so she is right on schedule (she turned 6 weeks on Sunday). Maybe I was so taken aback because we cannot physically see any of the signs yet (thank goodness), but still, I would have thought that somewhere along the way I would have at least put the thought in my head that we would arrive at this day. Maybe it is part of my subconscious denial? It didn’t help that the doc was a complete ass to me today, but I won’t bother ranting about that. Let’s just say I am going to refuse to take the last appointment of the day ever again, which seems to be the only time they want to schedule us! Grrrrrrr……..
Anyway, the signs she is displaying are an enlarging heart (viewed via chest x-ray) and irregular bloodflow in her heart (which seems to be taking a shortcut straight through the hole, instead of taking the normal course). The good news is that she is still gaining weight, albeit she is in the lower end of the weight percentile for her age. She weighed in at 9 lbs 6 ozs. Going forward we will be fortifying her breastmilk with a teaspoon of powered formula for each of her feeds to give her extra calories (the magic number we are aiming for before they will do the surgery is at least 11 pounds). Additionally, she has been started on 2 medications. Digoxin which is given to help the heart beat stronger, and Lasix which is given to help prevent the body from holding too much fluid. We go back in a month at which time they will do another echocardiogram. It looks like we might be looking at surgery sometime in May.
It was a very long afternoon and Stephen and I both feel kind of emotionally drained. It’s a lot to take in and digest. And quite frankly, it’s hard to believe any of this is really happening. I know some sleep will help me gain my perspective back. Thanks to my wonderful mom, who insisted on taking the monitor so she can get up with the baby, I will be able to get some rest tonight!
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