Cleo's Little Heart

Cleo was supposed to get a device placed in her heart on Friday, May 31.

When they sent a little camera in to Cleo's heart through her femoral vein in her groin, they discovered another hole (a rarer type of atrial septal defect than the type we knew she already had) which cannot be closed by a device. There's also a pulmonary vein in a part of her heart where it shouldn't be and that is also not fixable via a catheter procedure. The device was not placed in the hole (atrial septal defect) we already knew about. 

Cleo has to have open heart surgery to repair the newly discovered hole and vein. They will also repair the hole we knew about. We will have the surgery on July 19.

Roger and I are digesting this news as best we can. There's no good explanation that we've heard so far for how her cardiologists missed the second hole in all the years we've been seeing them. Twice a year for 6 years they've done echocardiograms and sonograms.   We were told that the vein and hole are small and could easily be overlooked but that's no excuse.

Ahnya, Robin, Linda and Kaelin were in town for Cleo's procedure and it really helped having them around to deal with the news.  We expect them all to come again in July.  My dad and Vivian will come at some point as well.

 

Cleo is doing okay.  She doesn't know about the upcoming surgery. She has to go for pre-op on July 18. That day, she will also meet with a child life specialist who will prepare her for the surgery and her recovery. It's a tough first 24-48 hours after the surgery.  She will be in ICU for the first 24 hours and will have a chest tube for drainage 24-72 hours after surgery.  She will be in a regular hospital room for 3 days after the stay in ICU.  We are dreading the surgery but there's no point in putting off a surgery she has to have.  People with these types of holes (atrial septal defects) are at a heightened risk of stroke, congestive heart failure, and pulmonary hypertension.

 

June 26, Roger and I are meeting with the surgeon who will perform the surgery.  Cleo will not be present at the meeting.

We know that the surgery will go fine.

Cleo trying out her new bow and arrow. Both she and Sidney love playing with it.

 

Making Cake and Visits in May

A few weeks ago, Roger made a cake and he let Cleo and Sidney help him.

Robin, Kaelin, and Linda came to town the weekend of June 1.  The kids enjoyed themselves in the pool on our deck.

The kids taking turns playing on the computer.

Ahnya teaching Cleo how to play War.

Sidney helping Roger assemble tacos.

Sidney admiring his taco.

June 9 and 10

Sunday, June 9 we had breakfast with my mom at the Westway Diner. Roger's cousin Tiffany met us with her husband Deacon, and daughters Raven and Kayla. I did not get pictures of them.  It was their first trip to NYC.  They live in Jacksonville, FL.

Sidney trying on my mom's sunglasses.

Us in front of Cleo's new favorite store - the Sanrio (Hello Kitty) store on 42nd Street.

City kids!

Eating ice cream from an ice cream truck and walking along the Bangledeshi street festival in Kensington, Brooklyn.

Sunday evening, we had dinner at Rachel's house. Fran brought her kids.  Hunter is next to Jack.

Fran and her big boy!

 Cleo and Roger walking on the damp sidewalk on Monday, June 10.

 Monday evening, we had dinner with Stephanie, Daniel, Aaron and Rebecca at Giovanni's. It's a cute Italian restaurant on Prospect Avenue and 8th Avenue in Park Slope.

Sidney hiding under the umbrella.

Father's Day!

On Father's Day, we went to Super Hero day at the Fernbank Museum of Natural History.

Here are watching a man blow jumbo sized bubbles.

Sidney trying to pop bubbles.

Roger giving Sidney an assist to pop a bubble.

Cleo with black suited Spiderman and Spidergirl.

Cleo with Ms. Marvel and another female superhero.

 Ms. Marvel punching Thor.

Me and my favorite Superhero - Wonder Woman!

Green Lantern and Cleo.

Falcon and Roger.

Black Widow, Thor, Cleo and others.

Wonder Woman, Iron Man and Cleo.

A buxom Super Girl, Cleo and Sidney.

Robin, Batman and Cleo.

Me showing Sidney how to hula hoop.

Afterward we had dinner at Los Bravos, a family friendly Mexican restaurant in Smyrna, GA.  It's hard to get the kids to take serious pictures now. They enjoy making silly faces so much more than regular smiles.