Isabelle Bentley

Scott stayed overnight with Izzie. She was struggling with being on room air so they threw a nasal cannula in. She got down to 74 without it. You want to be at 96 or above.  She got a bath this morning. She ate cheerios and yogurt but didn't want to drink anything really. Her oxygen levels were up to 99. Should be going home soon.  She is in a good mood and playing. Doesn't appear to be in too much pain.  She decided she REALLY wanted to feed herself and would not let me feed her.  We were released round noon to go home. 

Take 2.  Isabelle had her tonsils & adenoids out and a second set of ear tubes placed this morning. She was in a great mood, a little runny nose and they said a little wheezy. But I told them that this is her always - it's just how she is/sounds. So they decided to do it. She was in a great mood and playing and moving all over the place.  They gave her versid to go to sleep which quickly made her sleepy.  The surgery only took a little longer because they had trouble finding a vein but other than that it went well. She had a lot of fluid behind her left ear so he drained it and put in a new tube but the right ear had a big enough hole (left in it from the previous tube) that he didn't need to put a tube in. He may need to in the future but it's better to assume it'll stay open.  She spent 6 HOURS in the recovery room because her oxygen level (SATs) was low. It was 56 when she first came off the breathing tube. Most adults are around 96 and she's n...

Isabelle's ear tube surgery got canceled today due to congestion Reschedule tonsils, adenoids and tubes for February 20. 

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!

We got here nice and early but not before taking a family pic at home. They did all the pre-op stuff and then took her away after giving her some Valium to calm here down.  Update #1: They made the incision around 9:40 to look around to see what they are dealing with.  Update #2: They said they have her open and have examined what they are dealing with and it looks like everything's good and that there will be no complications. Her valves look good. Update #3:  She just went on the heart-lung by pass at 10:25.   Update #4: Dr. Breitbart came in around 11:30 to chat. He knows only what we know - nothing more.  Update #5: They told us she is off the heart-lung bypass around 11:25 and are closing her up. Update #6: Everything went great. She's heading up to the cardiac ICU.  Here is a comparison picture for day q from last year to today. Looks about the same.  Here are the machines keeping her alive. 

Happy girl doesn't know she's about to go under for ear tubes. You're gonna do WHAT to me? The surgery took 20 minutes and she woke up fine, we cuddled and she ate. Then we headed out. The guy said her canals are very small and they were filled with fluid. Her right ear had thick fluid in it. She could hear but not very well. He got all the fluid out and placed the tubes in. So now she should hear everything pretty clearly.  We were right down the road from dad so we visited him at work and she was the star of the show!

Not impressed.  She saw her ENT for the first time. So good news, bad news. Her ear canals are wider than most kids with DS which is good. It means she is unlikely to have hearing issues and unlikely to have fluid issues or ear infections. Her tonsils and adenoids and nasal passage ways are very small though which is why she always has sounded stuffed up and always will sound stuffed. It is extremely likely that she will need to have both her tonsils and adenoids removed by her 2nd birthday. They like to do them both together around 2 but if there are issues that hurt her breathing they do one around 1 and one around 2. 

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...

I wish this day didn't have to come so soon after Izzie's birth but it's the first full day I haven't seen Izzie. :( I got my gall bladder taken out but Scott took lots of pics for me. I am in a ton of pain and I miss my kids :( Big thanks to my mom for coming down to help Scott take care of the kids (and me when I get home) for a few days.