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.

Change

Her surgery was changed to this Friday, Friday the 13th. It's a good thing I am not superstitious. Although a good friend said 13 was her lucky number and suggested it would become Evie's as well. Here is hoping to the best outcome possible on this Friday the 13th. We appreciate all the prayers and love. Really truly, we are so blessed. I love this little Rose.

(This picture was taken by another friend out here.)

Update

We met with the heart team yesterday and it looks like surgery is scheduled for April 16th. I am glad to finally know when it will happen, but at the same time I am not sure I am ready for this. They did another Echo to check on her hole. It is has not improved at all and in fact they found two more holes. That brings the total to 4. The one in the upper chamber has not healed and so they will fix that one. The large ventricular septal defect, the main hole, is in such a precarious place that they are only 90% sure that they can patch 90% of it. However Nate assures me that 90% closed will be enough. The other two are at the bottom of the ventricle and they couldn't tell how big they were. So we won't know until surgery if they are able to close them as well. They said her defect is tricky and so her surgery is considered high risk, not routine like most vsd's. They said this was one of the biggest holes they have seen. That means she will likely have to stay in the hospital a week to two weeks instead of only 4 days, and the chance that she'll need a pacemaker is very high.  BUT she has gained even more weight! She has now gained a FULL pound since she was born, seven weeks ago.

 

I feel so calm and peaceful about it all. That doesn't mean that I feel like this is going to be a breeze, or even that everything is going to go the way I want it to. It means that I know the Lord is in control and that he is aware of us. It means that should the worst happen, I know without a doubt that it is what is the best. I know there is life after death, I know the plan of salvation is true. Should something happen, I have this baby forever. She is mine. It also means that she could have complications. But it also means that she could be fine. I really don't know. But the Lord does, and I trust him. I really do. I am amazed at the amount of peace and assurance I feel. I always wondered how people struggling with health issues could say they felt "peace" and "calm" while going through their trials. I now know. I am so grateful for that knowledge. I am so grateful for my testimony and my membership in the Church of Jesus Christ of Latter-Day Saints. I don't know how I would deal with all of this without it and without the love of my Savior. I am truly blessed.

 

Again, thank you to all of you. So many who are offering prayers in our behalf, we are strengthened because of you, you have no idea. We are so blessed to know such wonderful people. Thank you!

Conference and gaining weight

As a kid, I never quite understood why twice a year we had to sit and watch old people on T.V. talk about church stuff. I was told General Conference was important because it was when our Prophet and the Apostles spoke to us directly and gave us council. As I grew I knew that it was important, but still didn't get it. It wasn't until I was 16 and was challenged by my seminary teacher to actually watch ALL of conference, take notes, and most importantly, to pray and ask our Heavenly Father something and then to listen for that question to be answered in conference, that I really started to "get" conference. I remember as a 16 year old thinking I would do what the teacher asked, but not really sure that it would work for me. Then conference came and I was amazed that my question was indeed answered and not just once either. Ever since that experience I have LOVED conference. I have looked forward to it with joy and excitement. This year was no different, and in fact I was COUNTING on that promise by my teacher to be true yet again. Things have been tough for us, as is true for just about everyone, but I really needed some encouragement. I really needed a message just for me. Boy did I get one, several in fact. I am amazed again at how personally and intimately our Father in Heaven knows us and how he is kind enough to send messages just to us, just when we need them. This conference really spoke to me, and not just because of Evelyn and all her struggles. It spoke to me as a mother of all my children, to me as a sister, a daughter, a friend. It was what I needed to hear even though I may not have known it was what I needed to hear before hand. I can't wait to listen to and re-read all those messages.

Our kids are probably at the stage I was in as a kid, not quite understanding why we have to spend 4 hours Saturday and 4 hours Sunday watching what they may consider boring, but they were good sports non the less. Thankfully a good friend brought over some conference packets for my kids to work on during to help them listen better. I hadn't had a chance to even think about making them, so I was overjoyed that she thought of us!! This is the kids Sunday morning "listening" :).

 Poor Nate was post-call, he has just worked a 29 hour shift and was pretty sleepy. He had been able to sleep for a few hours and amazingly stayed awake for all of the talks!

 I really love conference and am so thankful that we can watch it from the comfort of our own home. It was amazing!!
Miss Evelyn is having a hard time still. Her heart failure is worsening. The fluid around her heart has double since we left the hospital and she can now no longer take food in on her own at all. The doctors say we would do surgery immediately if it weren't for one thing, she IS gaining!! A lot of people have asked me why, with all her struggles, have they not just done the surgery. The answer is that EVERY once she puts on makes her that much stronger, that much more likely to recover well after the surgery. When they do the surgery they have to stop her heart and put her on a heart-lung machine. They have to cut open her chest, crack her ribs and work on her heart. There can be many complications, and I want her body to be strong enough to eliminate a lot of those risks. THAT is why they wait. Because she is gaining.
Here she is getting a feeding through her tube.

 Look at her cheeks, they are getting fuller again!!! She is almost 9 lbs, hurray Evie!!

I love this little girl more then I could even express. She is such a trooper. I can't wait until this is all behind us and she is able to experience life without so much struggling. We meet with the heart team Thursday to decide what day to do the surgery. It is a lot scary, but it has to be done. Without this I would loose my baby. Wish us luck!!