Today started off as a great day! We got a call in our room early this morning from Lia's nurse saying that they were going to close her chest! We were so excited, so we hurried over to the hospital to see her quick before they kicked us out to get the procedure started. After her chest was closed, they let us come back to see her, and she even opened her eyes a little bit! She also moved her fingers and toes several times today. I know its nothing major, but it just made my day!
Lia's surgeon ordered another echo (after her chest was closed) just to make sure the shunt was working properly. Thats when my day turned into the exact opposite of great. Upon review of her echo, turns out her shunt had NO blood flow through it. I sound like a broken record, don't I? That is the exact reason she had to have her second surgery! So now, one week in Kansas City, two open heart surgeries, and we are no further than where we were a week ago. I was PISSED. Why wouldn't they check something like that before they closed her chest? I wanted to scream. All I could do was sit there and cry, knowing that they were about to tell me that she needed yet another surgery. I haven't been able to hold her since Tuesday, and just when I think I'm that much closer to getting that chance, I find out that its going to be another week at least before I get to hold her again!
Lia's surgeon has decided to go ahead and do her
full repair on Monday. He said that she will have to go on bypass again (for the 3rd time) during her surgery, and in the time that it would take him to try and do another shunt, he could just go ahead and do her full repair in the same time. Yes, full repairs are possible on newborns, no, it's not common, and will be a much longer recovery for her little body. You might remember me saying that they would've liked her to get a little older so she could handle the more invasive surgery better. I feel bittersweet about this. I am happy to get it over with and put it all behind us, but so sad and scared to put my 18 day old baby through her THIRD open heart sugery in ONE WEEK! Please please please pray for us. Monday morning at 7 am is her surgery.
I would never be able to get through all this without the support of my family. My in laws are here with us now and are staying through Monday. My mom, dad, Jack, sister and her husband, and my brother and his fiance will all be here Sunday in order to be with us Monday morning. I know it is not my job to understand why all of this is happening, but it's so hard not to question it. I am trying so hard to let God carry all these burdens for me and am praying for peace and understanding. It's WAY easier said than done though.
They are keeping Lia sedated through the weekend in order to have a few more days of recovery from her first two surgeries under her belt before her big day on Monday. She is stable enough to get through the weekend with no working shunt. I love that baby girl more than anything! I just want things to be "normal" again. I want to take her home and put clothes on her. I want to snuggle with her, and put bows in her hair. I want to take her for a walk, feed her, give her baths, smell the top of her head. I don't want to watch any more monitors, stare are her swollen body, and her chest tubes and pic lines, I don't want to see a ventilator doing all her breathing for her. I don't want to sit in that ICU room anymore!
Feels good to get that out. I go from sad, to mad, to sad, to calm, to mad, to sad about 1,000 different times a day. Thank goodness I have Ryan here. He is my rock. This is the hardest, most stressful thing I have ever gone through. I wouldn't wish this upon anyone.
 |
| Lia and her nurse, Beth. Beth is an Iowa grad!! Yay! |
 |
| Grandpa Maury and Lia |
 |
I know this is hard to see, but this is Lia's x-ray after they closed her chest today. If you look close you can see the wire holding her sternum together (which will be coming out in a few days) and you can alse see her chest tube, feeding tube, and breathing tube!
|
 |
| Jack got to go to Monkey Joe's tonight with my parents and his cousin, Eli. He had a fun time! |
 |
| Looks like fun! |
Just in case you forgot how cute she was...LOVE HER! I can't wait until she looks like this again!
Comments
You went to high school with my husband and I have been following what has been happening with your family. I have no words that can express how sorry I am that you all have to go through this. I wish her the best and will be thinking and praying for you all tomorrow morning. If you need anything please let us know. We are in IA but we can send anything your way, don't hesitate to ask. Stay strong, you will all be home, together, before you know it.
My heart goes out to you both, and to your parents. I will pray that God will bring Lia home safe and sound soon! I will be thinking of you on Monday and praying you all find strength to get through this.
MarKay Stuart