Sunday

We're going to take a drive up the coast this afternoon, play in the sand, and then come home and have a BBQ.

But we started out with a little ice cream--really, I put it in a clean bowl with a clean spoon, but Lilah quickly transferred it to her play dishware and is eating it with a Tinkerbell spoon:)

Yesterday, the social worker came by for our first post-placement visit. It went very well.

I'm busy getting things together for our stay in the hospital next month--pictures of the family and house, ring pops and leg warmers...

Lazy Days

 We started with a little blocks...I'll wear anything for a hat, except a hat.

 Then went to Sea World.

 I got to try some cotton candy...

 and it was so good...

I started jumping for joy:)

A Big Day

I received the call from the hospital that we've been waiting for. Lilah's open heart surgery is scheduled for July 25th. We are grateful!

 We started the morning with our usual--hiding in the curtains--this time her sisters joined her.

Then it was onto a game of train.

Then to the park...

but it was too hot. We went home for lunch, a little lawn work, and then went to the pool.

Fun!

Last night we flew ballons (yes, we have kites, somewhere in the garage...anyway, those helium balloons are easier to control).

 What does a toddler do when she doesn't want to share--wrap the balloon ribbon around her tummy!

Today, we went to Chuck E Cheese:

Sunday

 My seaweed loving girls.

 First thing in the morning, I like to put on a little jewelry and play hide and seek in the curtains.

Today's lunch--Chef Boyardee. Yep, it does happen around here. A few days ago, I served a lunch that was all orange--carrots, mandarin oranges and grilled cheese. There were a few comments. There are moments, though, when we're feeling the adjustment more than others. When getting all the kids fed, seeing a smile on their faces and, yes, they're wearing clothes that are clean and match--well, that's an accomplishment.

Update

Lilah's MRI went very well. I spoke with the cardiologist afterward and was very impressed with her. She was far more thorough than the doctor I saw in the office last week. She got out a "heart notebook" and showed me pictures of Lilah's needs. She was very happy with what she saw during the MRI and when I asked her if this was a common repair, she said yes. She explained things to me so I had a clear understanding of what is going on with my daughter. So far, every doctor has been positive. I am very grateful for this. The diagnosis is the same--Tetralogy of Fallot, complicated by the absence of Lilah's pulmonary artery and valve--but the doctors got great images and will, hopefully, have no surprises during surgery.

My older two and Nana came to the hospital to support Lilah. The day was LONG--got up at 6 am, checked in at 8:30 and checked out at 4 pm. My girls were great. Nana was wonderful, too:)

No pictures today--sorry--but this Mama is sick. I started getting sick in China (the last 3 days were brutal) and just when I was beginning to feel pretty good, I came down with a sinus infection.

Cardiac MRI

Lilah's cardiac MRI is scheduled for tomorrow. She will be intubated for the procedure and under general anesthesia. I don't like it, but it's necessary. Being intubated is no fun and I was hoping she'd only have to go through that once-when she had the open heart surgery. Waking up from anesthesia is no fun, either. I think I might have one not-feeling-so-good babe on my hands tomorrow. But she will be one step closer to repair.

Lilah is like a little tornado--always busy, on the go, and she eats as much as 3 babes (it takes a lot of calories to keep her heart working under its current condition). So from midnight on, she will be pretty miserable. No food or milk after midnight and only clear fluids up until 7 am. Right now, as we're battling time zones and adjusting to all the new, Lilah wakes up between 10:30 pm and 3 am for a midnight snack. Tonight, that will have to be chicken broth and jello. (So, if you hear the battle cries, you know where they're coming from :))

I headed to China with very few expectations. I thought Lilah might be tired, weak (Not A Chance). I wondered if she would have trouble adjusting (NOPE!). I hoped for the best, but knew it could be worstcase scenario (as far as her heart goes, it's neither). I'm going to write more on this later, as I know a lot of APs have concerns about this. Yes, we are facing more than we had hoped but I would do this all again in a heartbeat. My girl is perfect.

We're heading off for a swim now. It will be Lilah's first. She loves watching, but when we were washing the car yesterday, she definitely did not like getting wet. So I wonder how this afternoon's activity is going to go.

 My two littles.

My girls.