Lia had a great night...once she stopped being pukey from anesthesia, she started drinking and ate a good dinner. The recovery room nurse told us that most kiddos puke after a heart cath, especially those who have an EP study. Weird, huh? She was right...Lia had a rough go for a few hours.  I don't like seeing her that way.  It makes me start to panic that she won't ever be the same spunky, grinning, opinionated kid when she looks like that. But in true Lia Kate Stone rockstar style, she perked up within several hours and is becoming more like herself all the time.

The chair/bed thing in this room is far from comfy, so I started off the night cuddled up to her in the hospital bed. Halfway through the night, though, Lia whispered, "Mommy? I wanna sleep in this bed by myself now."  So kicked out I was. Good for Lia, not good for me... Needless to say, I'm ready to go home and get in my own bed.

Our nurse came in early this morning to take off her pressure dressings from where the catheters were in her groin (both sides).  Let me tell ya, that tape is no joke. It's just another example of how this kid is not like most other kids. She laid there while the nurse slowly worked off the most stuck on tape you have ever seen. It hurt. A lot. And she just took it like a man. Actually better than that... I'm so proud of her. She's such a good little patient. I know she knows no different, but she's special. But again, I guess I'm partial.

The cardiology fellow came in this morning early and checked on us. Dr Nugent (my new fave) just popped in and said we were good to go.  As soon as they can get the paperwork together we will be outa here! I'm so happy...:-) So is this little girl who misses her daddy, brothers and her puppy...

Thank you Lord once again for protecting our baby girl. We are so grateful.

Good news so far... :-)

Dr Nugent (Cath lab doctor) just came out and updated us. He says Lia's heart looks great for Fontan. Her aortic arch, pulmonary arteries, left ventricle, and mitral valve look good. Her pressures in her heart are all optimal for proceeding with the Fontan on May 6th. He was extremely pleased with her coiled off collateral vessel that they dealt with two years ago. All good news....

Now, about her electrophysiology study...they gave her a medication called Adenosine to try and see if they could avoid the full EP study. It was a simple test that could've gone two ways. If she had responded one way, they could have stopped and known for sure that she didn't need the ablation. Well, her heart didn't respond the way they wanted it to in order to not have to do the full study. So they are doing that now. It doesn't mean for sure she will need the ablation, but now they need to do the full study to know for sure. My gut tells me they will do the ablation. That's ok with me if they do. It's just another safety net.... Wait a minute. Dr Scott (EP doctor) just came out and told us that she didn't need the ablation!  So I was wrong...Finally, something in my life I don't mind being wrong about. Haha.

So they are finishing up with her now and we will see her in recovery in a little bit.

Love to you all.....

Still getting started...

The Children's staff just came out to update us.  Lia is asleep, and they are still placing the lines in that they will need to do the Cath. They are putting in two access lines in her groin area, one venous and one arterial. They will also put a line in her neck. That's how they will obtain all the numbers and pressures they are looking for. Tons of family and friends are hanging out, just waiting as they update us. 

Lia's precious preschool class sent us a video of them saying, "We love you Lia!!!"... I can't wait for her to see it. 

Thank you again for all the calls, texts, Instagram posts, and Facebook posts.  We are loving hearing from all of you...and hearing how you all are praying for our baby girl. 

I'll continue to send more updates as we get them.... Lisa

Tomorrow...

Ok I won't lie...this day has been a little rough. It's the whole "weight of dreading something you don't want to do" that I'm hoping ends up being worse than the actual "doing that thing you don't want to do".  That seems to be how it's always been in the past, and I'm hoping that this time tomorrow I'll feel like that burden will be somewhat lifted. Lia's heart cath is tomorrow. I know I said on the previous post that it was the 19th...but that was the wrong date. It's tomorrow morning around 8:30 or 9:00...we will get there at 7:15. 

Today's been one of those days that I've felt a little sorry for myself, and have thought all kinds of strange, irrational thoughts of how I wished some things could be different.  I wish there was no such thing as congenital heart defects. I wish all children could be born perfect and healthy. I wish parents never had to suffer as they watch their child suffer. Most of all, I wish this wasn't so for my child.  I wish she had a whole heart, with four functioning chambers and vessels that came out of the right place and entered the right place. I wish she didn't get tired so easily and could play soccer.   I feel selfish wishing for those things when I know she has done so well, and I don't take that fact for granted for one minute, but still. Sometimes I wish....

Then I remember how blessed we are. God has placed so many people and things perfectly in our life to help us through this.  I'm so thankful for all the big and small blessings. I'm thankful for a strong family of support. Both sides of our families are incredible. We have cried with them, and laughed with them, and been supported by them. We are also surrounded by supportive friends, of whom we consider our family as well. Lifelong friends, college friends, church friends, Rockwall friends, and work friends.....One word. Amazing. We are even strongly supported and loved by friends of friends. 

I am so grateful for little things like good parent-teacher conferences with the boys...and the teachers that are specifically loving, hugging, and watching over them through this. If I had to worry about their grades or behavior in addition to everything else, things could be much more difficult. Little things...

I am grateful for all the tiny moments just today that Lia said hilarious things.  I can literally feel my own heart expand as I watch her grow into this sassy, funny, sweet, real little person.  

  

I am also grateful for the people we are becoming through this. I've spoken before about lessons learned...and there are so many lessons we are learning. That's no coincidence. He's trusted us with Lia, and with her circumstances. He's trusted us to keep moving forward and to help as many people along the way as we can. He's trusted Corey and me to help each other in every moment of doubt and fear and difficulty. Our road ahead is uncertain, but I know we will continue to learn all along the way. I'm thankful for that. Yes, there is a lot to be thankful for....