Home at last

Hey everyone! Sorry about taking forever to update, I've been busy with Lilly at home. Yes, we're home! We've had our follow-up with the cardiologist and he said her heart looks great and she is healing wonderfully. He dropped had lasix to once a day because she was getting a little dehydrated, but other than that God is trully Good. We went to the pediatrician today and she is a whole 9 pounds, which is a significant difference since the surgery. Our next appointment will be to get her 1 month shots. (won't be fun). She is awake much more nowadays. She loves to stare at people talking to her. She is now able to focus her eyes and she found her hand. She can't ever decide whether she wants her passie or fingers.

We've been busy with several doctor's appointments, she now has five different doctor's. We will be seeing a geneticist, endocronologist, infectious disease doctor, a cardiologist, and her pediatrician. Babynet will also be coming out the the house each week to make sure that Lilly is meeting her developmental milestones. In the meantime, I start back to school next week and am trying to get ready for that while caring for Lilly. So I'll try to update as soon as I can. God Bless everyone who has and is helping us get through this difficult time.

Sleeping my way to recovery

Lilly is doing exceptionally well. She now has every tube and needle removed except for one IV. She is eating great again and slowly gaining weight. She is sleeping alot, but it's good for her recovery. The doctor said we'll probably be able to head back to Greenville on Tuesday or Wednesday! We're so excited to go home, being in and out of the hospital for two weeks is no fun. We are so pleased with how well she is recovering. We meet with the physical and occupational therapist tomorrow so they can make sure everything went well with the surgery.

Moving out of ICU soon!

Day 2 after surgery, recovering well.

Looking great, today's the day we move out of ICU!

I apologize for not posting an update sooner. Lilly is doing awesome! We are blessed to be where we are with the wonderful doctors and nurses who are caring for her. Yesterday was one of the biggest days for her in regards to recovery. The RA line that goes straight into her right atrium to measure her heart pressures was removed. After this the doctors gave her another echo-cardiogram to make sure her heart was not bleeding from the removal of this line. After an hour they removed the central line that was in her femoral artery and following that her catheter. We got to hold her last night and I even tried to breastfeed her. She had no problems eating, but a little with acid reflux. The nurse said that it should go away with time. She doesn't really know she s had surgery, all she knows is she's hungry and eats too fast. Lilly now only has one IV and the NG tube in incase she needs to be fed or given medicine. Because most of her lines are out we will now be able to move out of ICU to a regular room to further her recovery. I want to thank everybody again for supporting us through all of this! The road ahead of us will be a struggle, but with the support and prayers that we have received I know that we'll be able to get through it. I just have to keep remembering God does not give you anything you cannot handle!