Isabelle Bentley

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 ...

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...

Uncle CJ came and visited.  Grandma Fuchs came down yesterday to watch Jack. Today is "spread the word to end the word" day so here is the meme I made.  It cut of the bottom but it should say "buy a thesaurus".

Boston Children's was able to fit Izzie in for a "feed & wrap" MRI today which means she needed to not eat and then when we go t there, feed her so she hopefully fell asleep and then we wrap her nice and tight so shes warm. It was not sedated. If today did not work out then she would've had to go back tomorrow for a sedated one and be admitted overnight.  Luckily, after 45 minutes of me rocking her after feeding, she went to sleep and they were able to do the MRI. She did wake p crying a few times but we were able to get her to go back to sleep but a 45 minute ultrasound turned into 2.5 hours. Poor kiddo. (Reminder, I had an MRI done this summer on her brain so I had to get into the machine... and I always knew I was a little claustrophobic but never knew I was THAT bad because I cried the entire time and had to be taken out several times. They are looking for this suspicious thing in her brain that could be 1 of 5 things: 1. the brain bleed she had when she...

Today was Izzie's 1st leap day! It was also her first trip to the aquarium.

We went to grandma & grandpa Bentleys's to celebrate his 60th birthday!

After going to get Jack's hair cut, we went to the Ecotarium.

Zzzzzz. So today was... frustrating. On Wednesday I got a phone call from her pediatrician that the brain scan we had done like 2 weeks ago came back with subtle results but that we'd have to talk to a neurosurgeon about what that meant. Today was that day. Scott took Izzie to the appointment. Basically, her brain bleed is still there and is not shrinking which is leading them to think it may be fluid . If it's fluid, it needs to be watched and MAY need to be drained using shunts . However the neurosurgeon wants her to have an MRI BEFORE her surgery which is exactly one week from today. We found this out around 4p today... a Friday. (WHen I google signs of having hydrocephalus (water in the brain) Izzie has NONE of them so I am hoping it's just a brain bleed that's taking its sweet time to resolve).  In order for babies to have MRIs they need to be under general anesthesia. Many questions we have but can't be answered until Monday. Some are: Should a 7lb 14...

Look at that tummy! One of the moms whose daughter had heart surgery told us to take pictures of her abdomen before surgery since there will forever be a scar there after. She said she wished she had. EIT said she's doing great. She tends to tilt her head to the left but other than that, she's doing well. 

Snuggling on the couch after she got her blood drawn for her thyroid which is now measuring at 1.1 (needed to be above .08 and under 6.5).

What a cutiepie. Great eye contact. 

Tummy time!

We went to visit grandma & grandpa Bentley. Aunt Amanda and Mackenzie were there too!

I finally found my boba wrap - not that I could've used it on her before now - she was too floppy. But her head control is MUCH better. She loved it.  Jack, Scott, Izzie & I went to a Down's Syndrome playgroup and then out to lunch for a fundraiser for this organization called Heartbeats for Down's Syndrome . They bring a care basket and gift cards to the hospital while your child with DS is getting their heart surgery. 

Cuddling. This picture does not do it justice but this girl has more clothes than I do. These are her 3 month ones. I washed and folded them. She does not need ANNNNY more 3 month clothes. LOL. I do love all the zebra outfits coming up. She's still in newborn but kind of on the edge.

Watching her brother swim.

This past week she has begun sucking her thumb. Adorable.  Daddy time!

Peanut had a brain scan to check on that brain bleed. Haven't heard results yet. They also scanned her thyroid. It was fine.  Then she had an appointment with her endocrinologist.  Then playtime with her big brother.