Isabelle Bentley

We don't have to see Izzie's cardiologist for a year!!!!!!!!!!

Isabelle had her pre-op at Boston Children's today. She had blood drawn (cbc fine but thyroid is a little high - they may be able to reduce her meds). They did a chest xray which looked fine. They did an ekg and an echo. We met with a nurse practitioner, a surgical fellow, anesthesiology and her cardiologist. We found out this surgery will take longer and eh may be here longer and there are more complications than the first time. She's having LVOTO surgery. 

Isabelle's first anniversary of her first heart surgery was today. It's amazing how far she's come in a year!

So got some not great news at the cardiologist today. The left ventricle obstruction is causing her aortic valve to slightly leak so she needs to get a sedated echo at Children's at the end of February to see if we need surgery, nothing or maybe a balloon procedure. 

This peanut is 12lbs 8oz and 22.25 inches.  I know that because we had 2 appointments today that lasted an awful long time.  Cliff notes? There is some stuff to watch for but they are very unlikely to develop into anything.  Detailed notes?  Heart They did an echo on her heart and she has slight narrowing of her mitral valve. It hasn't gotten worse in the last 2 months and if it were going to be a problem, it would've gotten worse, likely. It's at 5mm. She also has a small obstruction in her left ventricle. It's also very small and unlikely to get bigger. Neither of those issues are causing pressure problems so they aren't anything to be concerned with. We will follow up in 2 months or if she starts to breathe heavily or sweat while eating, then I call him and he sees her right away. Fixes could include putting balloons in or surgery.  Brain For her brain, we saw the same guy from Children's that we saw when she was in the hospital for her heart su...

Izzie had her cardiology appointment and weights 10lbs 7oz.  Her murmur sounded louder so they did an EKG and an ultrasound to check it out. Ugh. So. Her mitral valve is getting smaller and it can be a complication with the av canal surgery. We need to keep an eye on it and if need be, more surgery or putting a balloon in to make it bigger - but only if she shows symptoms. Right now she has none. Also, she has a very minor obstruction in her left ventricle (called an LVOT) that looks like muscle. This means it is also narrowing. Same deal as the other thing - could resolve on its own, may need surgery or balloon. Back in 2 months for follow up. 

Today, Izzie got a chest xray which came back with nothing on it. She also had another sedated echo which came back, in the doctor's words, "perfect".  Her potassium level is a little high but they will recheck it before she goes home tomorrow.  From day 1 to day 5. Can you believe this angel had open heart surgery just 5 days ago!?!?! She was very smiley today and she's gained weight since being int he hospital. CJ & Andie came and visited. 

Izzie's pre-op day at Boston Children's Hospital.  Today has been very long. We had to be here at 7:30a to check in. They gave us wicked cool temporary badges as seen below. Then we got bloodwork done. They had a hard time finding her veins. Must be a Fuchs thing. They tried both arms and she screamed the entire time :( Her potassium levels came back a little high but nothing to worry about.  Then she has a chest x-ray but we weren't able to take pics of that.  After, they did an ekg (seen below) and then they measured her height (20.5 inches), weight (8lbs, 8oz), and head circumference (36cm). They checked her blood pressure which since she was screaming was high. Her pulse and oxygen were fine. Then we had our surgical consult where we found out the nitty gritty step-by-step details of her surgery tomorrow. I will detail those tomorrow.  Then we went on a tour of both the cardiac ICU and step down level cardiac ICU.  Then we had our anesthesi...

Izzie had a cardiology appointment today. It went well- her heart is doing fine still. She's supposed to be gaining an ounce a day and she's lost weight so they are going to have me add formula to my breastmilk to make it higher calories.  CJ & Andie visited.  Grandpa was still here too.