I cannot even begin to describe to you what today was like. I'll do my best though. Ryan and I spent most of the night next to Lia, but then decided around 1 am to try and get some sleep so we could be ready for her big day. We set our alarms for 5:30am so we could be back in her room for some more time with her and to be sure we didn't miss a visit from the surgeon who was coming to talk to us around 7 am. After a visit with the anesthesiologist, and the surgeon who explained to us in detail what he was going to do, the surgical nurses came to take our sweet girl to surgery. They let me carry her as far as the operating room doors, where we said our goodbyes, gave lots of kisses, and of course, sobbed. I had Ryan by my side, along with my mom and dad. I was so thankful that they were there. We waited for updates from the nurses in the Ronald McDonald waiting room at the hospital (thanks for the tip, Polly). They checked in with us about every hour to let us know how things were going. The whole procedure took about 2 1/2 hours and then the surgeon came to talk to us. After opening up her chest, and looking at her heart, instead of a BT shunt, which we thought she was getting, he decided to do a central shunt, connecting her aorta directly to her pulmonary artery. The reason for doing this, was so that she could get as much oxygenated blood flow to her lungs as possible.
Once we knew she was back in the PICU, we moved to the waiting room there, and waited and waited and waited for a call from her nurse saying that it was ok for us to come back. Yesterday, I told you how they had come to mentally prepare us for what we were about to see when we saw her, but it was still a total shock. Her poor lifeless body, swollen, tubes everywhere, a ventilator doing all her breathing for her. 11 different machines pumping different medicines into her body. No parent should EVER have to see their child that way. I had to keep telling myself that this was necessary in order for her to heal and for us to move on with our lives. The surgeon decided to leave her chest open, (yes, thats right, no staples, no stitches, completely open) in case there was any swelling with her heart. I guess this is common, but still, just a small patch between me and her heart was very scary. You could see it beating under the patch that covered it. They will most likely close her chest up tomorrow, maybe Wed. depending on her stats and how well she is recovering.
After we knew everything was ok, we went and checked into our room at the RMD House! Yay! We took a long nap, and then had a nice dinner out with Jack and my parents. After dinner we went back to the hospital to say goodnight to Lia, and I thought, "oh, I'll be fine, I've already seen her once in this state..." I was wrong. The second time was even harder than the first. I sobbed. Thank goodness Ryan was there, because I might've collapsed had he not been there for me. I hate this. I hate everything about all of this. I want to come home. I want this to all be over!! Knowing that the shunt is helping her get more oxygen is a relief, but also knowing that all it did was buy us a few more months time before we have to do an even more invasive surgery makes me sick to my stomach that I will have to go through all of this again!
After my melt down at the hospital, I had to say good bye to Jack. Again. So then I sobbed even more in the parking garage. I'm so mentally and physically exhausted that I can't even think straight. I am hoping to get at least 2 good nights sleep here in the RMD House, and then maybe start sleeping with Lia again. We'll just have to see how things go.
I just took a hot shower, and as soon as I finish this up, it's lights out for us. Again, I can't thank all of you enough for all your encouragement, and prayer during this time for us. I posted on Facebook today that I would never be able to respond to everyone who has emailed, called, texted, sent cards, etc., but please know that I am reading ALL the comments, emails, texts, and each one helps me get through the day.
I'm attaching a picture of Lia, post-op. The picture hardly does any justice for what she really looks like in person. I can't wait until our little girl is awake again, looking around the room wide-eyed, wanting to be held, wanting to be fed, and I never thought I would say this, but heck, I'm even excited to get to change a diaper again.
-Ashley
Once we knew she was back in the PICU, we moved to the waiting room there, and waited and waited and waited for a call from her nurse saying that it was ok for us to come back. Yesterday, I told you how they had come to mentally prepare us for what we were about to see when we saw her, but it was still a total shock. Her poor lifeless body, swollen, tubes everywhere, a ventilator doing all her breathing for her. 11 different machines pumping different medicines into her body. No parent should EVER have to see their child that way. I had to keep telling myself that this was necessary in order for her to heal and for us to move on with our lives. The surgeon decided to leave her chest open, (yes, thats right, no staples, no stitches, completely open) in case there was any swelling with her heart. I guess this is common, but still, just a small patch between me and her heart was very scary. You could see it beating under the patch that covered it. They will most likely close her chest up tomorrow, maybe Wed. depending on her stats and how well she is recovering.
After we knew everything was ok, we went and checked into our room at the RMD House! Yay! We took a long nap, and then had a nice dinner out with Jack and my parents. After dinner we went back to the hospital to say goodnight to Lia, and I thought, "oh, I'll be fine, I've already seen her once in this state..." I was wrong. The second time was even harder than the first. I sobbed. Thank goodness Ryan was there, because I might've collapsed had he not been there for me. I hate this. I hate everything about all of this. I want to come home. I want this to all be over!! Knowing that the shunt is helping her get more oxygen is a relief, but also knowing that all it did was buy us a few more months time before we have to do an even more invasive surgery makes me sick to my stomach that I will have to go through all of this again!
After my melt down at the hospital, I had to say good bye to Jack. Again. So then I sobbed even more in the parking garage. I'm so mentally and physically exhausted that I can't even think straight. I am hoping to get at least 2 good nights sleep here in the RMD House, and then maybe start sleeping with Lia again. We'll just have to see how things go.
I just took a hot shower, and as soon as I finish this up, it's lights out for us. Again, I can't thank all of you enough for all your encouragement, and prayer during this time for us. I posted on Facebook today that I would never be able to respond to everyone who has emailed, called, texted, sent cards, etc., but please know that I am reading ALL the comments, emails, texts, and each one helps me get through the day.
I'm attaching a picture of Lia, post-op. The picture hardly does any justice for what she really looks like in person. I can't wait until our little girl is awake again, looking around the room wide-eyed, wanting to be held, wanting to be fed, and I never thought I would say this, but heck, I'm even excited to get to change a diaper again.
-Ashley
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| My sweet Lia, on the road to recovery! This is how she will be for the next several days. You can see the patch covering her opened chest. I hate looking at this picture, but know that someday I will appreciate the memories. I love her so much. |
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Amanda