Isabelle Bentley

Izzie had a cardiology follow up today. So they've been watching two minor things that have happened since her surgery. One is an obstruction in her left ventricle. One is a leaky mitral valve. The left ventricle obstruction has stabilized and is unlikely to ever turn into anything. As with most things, anything is possible.  The mitral valve has gotten leakier. Only slightly. They're gonna watch her for awhile and make sure it doesn't get worse and they can't find a reason why it's leakier. He said it could just be one of those things where it's worse some days and we caught it on a bad day. There are several things that can cause it to be leakier, none of them were found in her.  Grandma Fuchs is down for a few days helping me since Scott is in Atlanta this week. Isabelle sat in the cart for the first time. She LOVED it. 

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. 

Isabelle has an ekg and echo today and they determined there are a few things we need to keep an eye on. UGH. Here is the summary from the docto r: S he has a couple of small “patch margin” VSDs and one very small patch margin ASD.  There is very mild left ventricular outflow tract (LVOT) obstruction, likely the result of the mitral valve repair (we see this with some regularity and when mild it is no cause for concern).  There was mild mitral regurgitation (often seen after this type of repair).  The left ventricular function looked normal.  I just looked over the pre-discharge echo report (thanks for giving me access!  Dr. Breitbart’s office hasn’t faxed over a copy yet) and everything that I mention above was noted on the pre-discharge echo with the exception of the patch margin ASD (the VSD was noted but not the ASD), and the LVOT obstruction.  We were likely able to see these today and not in the pre-discharge study perhaps because she was so angry...

Ugh. Two appointments today too.  First up was a cardiology appointment. They hooked her up to machines. Her heart is looking great (for what it has) - best case scenario. It's balanced still. Neither side is working harder. The doctor said she's doing so well that she may not even need surgery at 4 months - she could go until 6 months. The bigger, the better... and since she is SLOWLY gaining weight, it might be better to wait if we can. He doesn't even want to see her for 2 months. We're still waiting for the cardiologist from Children's to call.  Then she saw the eye doctor. It's still too early to tell if she will need glasses however there are 2 things that could be very serious in newborns with downs syndrome. One is cataracts and the other I forget but good news - she has neither and it's very unlikely to develop after her current age. YAY.

She had her cardiology follow up and he said she's doing as well as she can be with what she has - best case scenario. Her VSD is very small so it's not letting tons of extra blood flow to her lungs which would cause issues breathing and eating. Her 2 ASDs are doing fine. Her heart is still well balanced.  We visited my friend Jen and her 3 kids today!

She's back up to 4lbs 6oz. She needs to keep gaining though. I ended up in the ER tonight with massive pain and gallstones but was released - need to get surgery in the next few weeks. HUGE thanks to Amber and Jeff for watching Izzie and Scott's mom and dad for taking Jack. DOn't know where we'd be without help from great friends and family. <3

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.