Isabelle Bentley

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

Good morning peanut! So her chest tube and some other line got pulled today which means we can hold her! Dad got to hold her first! Here she is with most things out. That nasal cannula is just .25L of oxygen and will come out tonight or tomorrow.  The thing on her left foot is just a blood pressure monitor. On the right foot is a pulse ox. On her left arm is an IV so they can draw blood or give her meds. The rest of the stuff is just gauze. Then, because she's doing so well, she got move out of CICU (cardiac ICU) into the step down unit. Unfortunately she shares a room again. It also means we can no longer get a room at the hospital :( Mom's first time holding her. She's eating formula again - like a champ. By the way, here is the change from Friday at 1:00p to Sunday at 1:00p. Babies heal from this surgery SOOO quickly. She's not even on morphine anymore. Just tylenol. SHE HAD FREAKING HEART SURGERY AND IS ON TYLENOL LESS THAN 48 HOURS LATER! ...

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 ...

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...

We all went to a down's syndrome playgroup in Tewksbury and met some nice people. Got lots of advice for the future but also for staying at Children's while she has her surgery and recovers etc...  A "friend" on facebook wrote this book - just got it today. 

Izzie has a nice stash of her own ornaments so far! Top left is from Robin. Next to it on the right is one I bought and next to that is one my mom bought. Then to the right is the hand print one her daycare lady made with her hand. Then bottom left is from Crystal's mom, Cheryl. To the left is from Scott's mom. To the left is one I had made. And to the left is from Sharon.  Snoozing.  The one on the far right was made with her hand by her daycare lady! Scott, Jack, Izzie & I went to visit a student at NHS who has downs syndrome, along with her mom and dad and chatted about what life may be like for Izzie in the future. Scott and I also watched the first three episodes of the A&E show Born this Way about 7 young adults in Los Angeles who have Downs Syndrome. It was really interesting. There is such a range of what they can do. But it also shows their parents and there are definitely ways to raise a kid with DS and ways not to. We...

Jack & Izzie riding in the car together for the first time.  Izzie is the 2nd patient ever at the brand spanking new down syndrome clinic at UMass. It was their first day ever open. Wow. We found out she definitively does not have a clubbed foot. She just holds it weird. We need to stretch it out every day but d not need to cast it every week nor need braces. THANK GOD! And this is her at her 1st ever doctor appointment. She is back up to her birth weight. And her ear canals are big enough that the dr could see her eardrums. Lots of kids with down syndrome have hearing issues because their canals are too small. Her dr said she's very active - more active than most newborns. There is still a grade 2 bleed in her brain but it should go away soon. On a wicked annoying note - my csection wound half opened yesterday at the hospital because one of the stitches was stuck. So now every day for the next 6 weeks a visiting nurse has to come pack the w...

Welcome to life, Ms. Isabelle Susan Linda Bentley. Born 11/7/15 at 11:21p at UMass Memorial. Weighing 4lbs 5oz and measuring 17 inches exactly. So... she kicked Jack's butt by staying in for an extra 9 weeks... but still came 5 days early. I had been having braxton hicks on and off since 18 weeks. Very rarely did I have a real one. But I'd have 50 BH ones a day sometimes. Well a few days before today, I started having some back contractions. Not super painful but definitely different.  I went to bed around 7:00 (yes, I am a grandma). Around 8:30 I woke up and felt a really sharp pain in my cervix and had to pee. So I stood up and my water broke like a waterfall and wouldn't stop. So I screamed for Scott and told him we had to get to the hospital ASAP. I continued to gush the entire way. Gross. We got to labor & delivery and they hooked me up to monitors and tested the fluid. Baby was ok but definitely my water. So c-section was being done in the next hour.  The ...