Isabelle Bentley

She's going home today! Amazing. We were told it'd be 6-9 days minimum and it's 4... she's done beautifully. 

I can't believe hoq quickly kids recover from FREAKING OPEN HEART SURGERY.  They pulled her chest tube.  What a champ.

Dad is a rock star and staying at the hospital with Isabelle while I go to work and take care of Jackson. Huge thanks to my mom who also is taking care of Jackson. They pulled out her breathing tube and she's awake - one day early!

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. 

This is all the equipment keeping our peanut alive and well.  The vent came out today - she was breathing on her own with it in so they just pulled it. The organization Heartbeats for Down's Syndrome came by with about (I'm guessing) $250 worth of stuff for us and her. If you want to donate to a cause that gives 100% of its profit to families whose kids with Down's Syndrome who are having heart surgery - I'd highly recommend them. The restaurants in the area are pretty expensive so the gift cards are great and so highly appreciated. Thank God parking is only $10 a day here.  She also took her first food by mouth - 1oz of pedialyte. She chowed it down and wanted more but we have to go slow. She was MAD she couldn't have more. We fed her more later. So we had our neuro consult with a resident but will have the full thing with an attending tomorrow. Basically, what it boils down to is this. Your brain is either brain or fluid. She has some ...

Isabelle was supposed to not eat formula past midnight so I fed her at 11:30 last night. And then she could have pedialyte until 4:00a so I woke up and fed her at 3:30 and she went right back to sleep. And then I set my alarm for 6:00 so I could get ready for the day and snuggle her for a half hour. I got to sleep next to her (only 1 parent allowed). It was a chair that unfolded into a bed... and luckily I am able to sleep anywhere as long as I am somewhat reclined but I wouldn't wish that on anyone.  They also came in to give her a surgical scrub twice during the night.  They came to get her for her heart surgery at 7:15a and we got to go down with her and give her last minute hugs. We also got to meet her surgeon - Dr. Chris Baird.  Then we went to the waiting room and set up shop! Both of us did work because it's the easiest way to take our minds off of what was happening. Neither of us are very good with down time and just thinking about it would've eaten us a...

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...