Mending a Broken Heart

It has taken me a long time to get to this post. I knew it would. I knew we were in for a wild ride, and wild it was. I am just glad to be on this side of it now. Glad to be able to look back and say "we made it."

On Thursday evening my parent flew in to be here with us for the surgery. We had planned on having Evelyn blessed on Sunday, but with the change in surgery date to Friday we had to improvise. We ended up being able to do it at home. I had wanted to invite all our friends and have a lunch and make it as normal as I could, but nothing about Evie has been "normal". I didn't sleep much that night. I wanted to, I knew I needed to, but I couldn't. We had to leave the house by 5:45a.m. and I was up at 4. We got to the hospital and even though they had us give her a special bath the night before, they had us wash her again with special cloths before getting her into her hospital gown. 

 It was hard seeing her in her little gown. I knew what it meant and that was hard. She was so calm and sweet, as usual. (Partially because she was so weak and frail, but more on that later...) We all just sat there, holding her, talking to her... waiting. My wonderful friend Kara came to stay with the other kids, so both my parents could be there with Nate and me. I needed all of their support. All the doctors came in to talk with us before; the surgeon (who assured us this was going to be a piece of cake) the anesthesiologist (who likewise said there were risks but not to worry he'd never seen any of them actually happen to anyone) and several different nurses.

 Finally it was time to go. They led us to the surgical suite, Nate got to go in and help start the sedation process. I stood outside the door crying like a baby. My parents had to wait in the waiting area after walking with us to the doors that led to the surgical area. Then Nate came out and we left. We waited in a family waiting area with all kinds of things to distract us. It didn't help me. They said they would call every hour with updates. So we waited. We had some wonderful friends come visit and bring care packages. Their support and kindness is more appreciated then I think they realize. It was so nice to see friendly familiar faces. And the food they brought didn't hurt either ;)!! The updates were brief and sounded good. At about noon they told me it was almost done and everything went great. We were so happy! They were done faster then they thought and it went so easy!! Then we got a call. Not one I wanted. The nurse was very guarded and only said that they had to put her back on bi-pass and open her back up because it wasn't fixed. I had no idea what that meant. Then about an hour later (and mind you she told me it was going to be another couple of hours...) the surgeon and a nurse came in looking worried. They sat down and the surgeon says, "Wow, what a day. That was quite the surgery." as he rubs his face. Then he proceeds to tell us that this was unlike anything he had ever seen, and he is the head of the heart transplant team and the top pediatric cardiothorasic surgeon for crying out loud!! He said this humbled him and it was one of the hardest surgeries he had ever done. Her hole was bigger, was not where they thought it would be. The anatomy of her heart was not as it was supposed to be, and the holes they found the day before- they ended up being bigger then they thought too. But when he went back in to fix those he couldn't. So he tells us that she will most likely have to have this surgery again, but not until she is one or maybe two. She SHOULD be able to grow and develop with the repair he did. Should. I wanted to hear WOULD. But there is a chance that these other holes could be fixed in a cardiac cath lab instead of it having to be open heart. But only time will tell. I really, REALLY don't want to have to do this again. EVER. They told us we could see her, she was being taken to the PICU. The surgeon told us he had stayed the whole time and he closed her himself. Apparently he never does that. So we headed to the pediatric ICU. This is what I saw.

 I burst into tears in the hall way! I didn't even make it into the room before I lost it! I just could handle seeing her this way! It still makes me cry to see her like that. She was out for five days. It took her an unusually long time to wake up. She was on the ventilator that whole time and that is not as they wanted it either. But she did wake up and she was finally extubated. It was a really long hard process, but she did good.

 Then we noticed that her pupils were different sizes. That wasn't normal. Then she started having weird "episodes". It is really hard to describe what was happening, but she was acting weird and doing weird things with her mouth. Neurology was consulted.

They did an evaluation and decided she needed an EEG. So she got these lovely wires stuck to her head. That is when they noticed that one eye was sagging and wouldn't open all the way. They had us see an Opthamologist. They all agreed it was Horner's Syndrome cause by the central line placed in her neck. Unfortunately that anesthesiologist was able to see one of those side effects for the first time. When they put her IJ in they damaged one of the nerves in her neck. We won't know if the damage is permanent or not for a while. So she looks slightly handicap, but according to the MRI and the EEG her brain is normal. She did have what they think was a couple seizures, but they didn't cause damage and she doesn't appear to be having any more. Wow. I am so glad that it ended up just being that, but I am sad that she had to have anything more wrong. Poor girl has been through SOOOO much. And she isn't out of the woods yet. We got to come home after 10 days, which was great. She is still struggling to eat (she is still only 9lbs. 8 oz as of yesterday), but we are hopeful that she'll get the hang of it and that feeding tube will FINALLY be gone for good. Her eye and everything is still abnormal, but we are hoping it will get better. I can not believe that we are starting to come out of this! She has to be handled with great care still, she still has a million dr appt, she is still on a few medications (her blood pressure was high) BUT she is already looking SO. MUCH. BETTER!! She got her voice back two days ago and let me tell you she is using it!! Gone is my quiet passive little girl, she has some fight in her and she is starting to show it! She finally has energy, she can wiggle around and smile and coo and CRY! It is funny to think that I am happy about that, but to see her really belt out a cry is so amazing!! I am so happy that she has improved so much already!!! She is a fighter and we will make it through all of this. No matter what comes our way. I am so grateful to have my little Evelyn and I am so glad she was able to stay with us. My parents we such a tremendous help, I can't even begin to thank them. My mom, who spent her birthday here, got up every night all night with her so I could sleep as well as cooked and cleaned etc.. My dad took care of the other kids, took them to and from school, helped with homework and even made dinner. So many other people helped and offered their love and support. Thank you to all of you. We needed your love and support and we are so thankful for it. I am just overwhelmed with love and gratitude. I have such a testimony of the Lord and his plan. I don't even pretend to understand it all, but I know he hears and answers our prays and that he knows what is best.
I know that was an incredibly long post, but I had a lot to say. I will have even more to say as I try to get caught up on what all went on these past few weeks (yes there is even more). I just knew I needed to get at least this part up before the memory of it all started to fade. We had so many wonderful experiences through this all and I just wish I could share them all and how it changed and strengthen me. I will forever be grateful for that. And for all those who helped us through this, in whatever way they could. Thank you.