Isabelle Bentley

Someone turned 9 months old today! UTV ride. We also got the complete neurological write up from Children's today. Read it if interested: I had the pleasure of seeing Isabelle Bentley in the Stroke and Cerebrovascular Disorders Program in conjunction with my attending physician, Michael Rivkin. Isabelle was referred for initial consultation regarding her chief complaint of abnormal MRI. History is provided by her mother and review of the medical record. Although you are familiar with the patient's history, please allow me to relate pertinent portions of it for our records.  The patient is an 8 month-old girl with history of Trisomy 21, AV canal s/p repair in March, and hypothyroidism presenting for evaluation of an abnormal MRI. Isabelle was born at 36.2 weeks.  Prenatal imaging notable for AV canal and ventriculomegaly.  Diagnosis of Trisomy 21 made prenatally.  Isabelle had a head US shortly after birth that was notable for grade II IVH...

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...

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 ...

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...

We went to her neurology appointment and they were basically like "why is she here?"... They said she's doing great and the brain bleed will reabsorb and not cause her any issues. They said we will likely never see them again. LOL.  Then we went with grandma & grandpa Bentley to Jack's swim lesson!