Look how far we've come

Friday, June 19, 2009

One year post op and 17 months old

Today we celebrate the anniversary of Lily's surgery to repair her defects. I can't believe it's been a year! I remember so clearly what I was doing at this time a year ago - pacing the same-day-surgery waiting room with a sleeping baby, updating everyone constantly, stressing out! If only I could have napped! But it came, and it went smoothly, and I'm amazed at the changes I've seen in Lillian over the past year! She was such a trooper, and she's grown and developed so much! I believe she's about 22 pounds now, not sure how tall. I had to fold up the soft pink blanket I bought her the day we left the hospital last summer. It was kind of my "healthy heart" present to her, and now she's way too big for it! But it was used almost every day over the winter. It's sitting in her closet now and it's something I know I'll keep forever.

As you all celebrate this milestone with me, please keep Tiffany Robinson in your prayers, as Sunday is the anniversary of her daughter's death following a stroke she had post-ToF repair. Her surgery was the same time as Lillian's - you can go back in my updates and read her story.

Yesterday Lily turned 17 months old! She still only has 1 tooth, she's not really talking yet and not walking - but she's getting soooo close! She will bear walk and stand herself up for a few seconds, and then she sits down like "what am I doing up here?" She's very expressive - her facial expressions crack me up sometimes. When she's happy or excited, she gets big eyes and claps and goes "yaaaaaaaaaaaaaaaaaaaaay!" I'm SO not concerned about her speech yet, I remember what a rough start she had and she's so stubborn, she will talk when she damn well pleases. She gives the best kisses. When I go "kiss!" and pucker up my lips, she scrunches up her nose, puckers her lips, and leans in to me. It's adorable!

Our next cardiology appointment is October 6th at 9:45 am. Little over 3.5 months away!

Tuesday, June 16, 2009

Sorry for neglecting

I got wrapped up in her carepage and kept forgetting to copy and paste posts. Then it became months with no updates and I just let it slide.



In a nutshell, Lillian is doing quite well right now! Her last cardiology appt was in April and it showed normal heart functioning numbers, with slight enlargement on the left side still. Her next appt is 10/6.



She is crawling, she will stand for a couple seconds alone, she cruises furniture like a champ. She is not walking yet, not talking, and only has 1 tooth.



She weighs about 22 pounds right now, which is low on the charts for her age but she looks chunky and huge to me! We are coming up on her turning 17 months old on the 18th and the 1 year anniversary of her surgery and I cannot believe it's been a year, and I'm astonished at the changes in her since her repair.



She has been very sleepy the last few days and it kind of concerns me. She slept Sunday from 9:30-11:15am and then 1pm-3:30pm. Yesterday she slept from 10:45am-12:30pm and then was back asleep 45 minutes later and slept from 1:15-4:15pm. This is quite uncharacteristic of her. Hopefully it's just a growth spurt maybe? Of course with her history I will always worry.

More consistent updates to follow, I promise!