Squawk!

So a lot of people keep asking, "How's Eva??" or "How are you doing??"

The first question is a lot easier to answer than the latter. Eva is doing great. We had a difficult transition from the hospital to home, but once she settled back into a routine she has been nothing but smiles, giggles, and squawks. On Saturday, Eva discovered her voice and has been letting EVERYONE know about it. We get odd looks at the grocery store as Eva squawks and squawks, but happy to have a little talker. The new medicine seems to be doing what it's supposed to do and we only have to give it to her twice a day. This is a huge relief as we can now let her sleep through the night and actually attempt to be sane parents. As for the actual condition ... she still has the problem and the hope is that it will go away in a year. We will just have to wait and see.

As for Corrie and I, it is a little bit of a different story. Yesterday at church we looked at Hannah's prayer. It is a profoundly honest prayer, as Hannah laments to God for losses in her life. Hannah was unable to have children. During the worship gathering, we were invited to honestly acknowledge the pain, losses and lies in our life and encouraged to live in God's truths. As this was happening, people anonymously texted what they were going through and they showed up on the screens in the auditorium. Suddenly, the things that Corrie and I have endured the past month became very small. Abuse. Affairs. Alcoholism. Abandonment. Those were just a few of the things that showed up. The reality is that all of us have pain. All of us have difficulties. All of us suffer, experience sorrow and loss. It's part of the human condition. While I don't want to minimize what our family has experienced over the past month, I have come to realize that as Corrie and I have honestly taken this pain to God, we have found that He is there with us. As we have taken this pain to all of you, we have realized that you are all there with us. We are not alone.

And in the powerful words of Michael Jackson: You are not alone either.

We have found great comfort in this fact.

This week is our first week back to our new normal. Corrie will work a full week. I will work a full week. Our incredible childcare will finally get to work a full week (thanks Emilie and KG!). We are learning how to live and breath all over again.

I gotta go change a diaper.

Home.

We are home.

Eva is crying hysterically.

Yes, we are home.

Thanks for all your love and support this past week. Eva loves her vacation time at the hospital and is nothing but smiles and coos, at home, it's an entirely different story. We have decided to turn her nursery into the most sterile, bane and lifeless looking room in the house to try to convince her she's still at the  hospital.

Now we're going to try to get some grocery shopping done. Ahhh, the little things.

Hospital-ity

We made it through another couple of days in the hospital and hopefully should be headed home tomorrow. All is going well, and luckily the most traumatic part of today was having to listen to Eva cry while her blood was drawn. They are going to test her blood to determine if her body is handling the new medicine appropriately. The doctors will look at the results in the morning and if all is well we should be discharged soon thereafter. (It should be noted that I hid in the corner while Adam comforted her during the blood draw. I can handle her turning pale and blue and listless from heart issues, but I can't see a needle.)

Eva has loved being in the hospital. She thinks this is some sort of luxury cruise. She coos and smiles for all the nurses, doctors, volunteers, interns, residents, students, etc who are parading through her room at all hours of the day. She has had a few momentous moments too. She rolled over for the first time (stomach to back) and has finally learned how to put her pacifier in her mouth. But her favorite new trick of the day was learning to shake the wires attached to her chest like a tambourine. All afternoon she was banging them against her hip while kicking her legs, sounding off all sorts of beeps and bells and making the nurses run in. Then she would give them a gurgly smile and yell, "gotcha." (or at least that is my interpretation of her babble.)

The hospital has been harder on me. It breaks my heart being here and seeing all the kids that are hurting and all the people that love these kids. Passing through the lobby today I overheard a group of people praying and I caught one line, "Lord, let her have the opportunity to grow up." The opportunity to grow up is something that should just be taken for granted. I get overwhelmed by the pain I see here and then I get equally overwhelmed by the goodness in this place. There are so many people here that give so much. There is a volunteer that works the front desk that hand appliques little dolls for all the kids as they check out. There are friends and family constantly filling the lobby bringing food, hugs, and prayers.

We have been lucky to receive so much of this goodness. I have been so encouraged and blessed by the emails, text messages, food drop offs, and well wishes of so many friends and family. Thank you all. I feel so lucky to be so well cared for and for my daughter to be so loved. I am not sure I could have made it through this last month without all of you. I have felt so fragile and anxious so much of the time, but I truly feel like the love from all of you has made God tangible to me. I am not sure why God allows hardships to happen. Why earthquakes can destroy and children can be sick. But I am grateful that in those hardships He allows us to see the best and most brilliant side of humanity in the way we generously love and care for each other.

Eva Update #6

So we have found ourselves back in the hospital once again. In an odd way, this place is becoming a home away from home. Everyone is so friendly and supportive, but since everyone here has a sick kid, it can get pretty depressing. I now understand why there are clowns in the world.

For those with short attention spans, Eva is fine and we're stuck here until Thursday morning to make sure she takes the new drug okay. We got placed in a single room that has wifi, so we basically watch a monitor while getting work done on our laptops. Should be an exhilarating couple of days.

For those who want all the gritty details ... We arrived at 8am on Monday packed and ready for 3 days of hospital. Our cardiologist told us to see her first and then she would walk us over to our hospital room. We waited until 10am until we finally saw the doctor. While it was a long wait (we ran out of diapers!), it was our best visit with her yet. She fully explained the WPW condition to us including worse case scenarios. It was good to know that no matter how "bad" she might look during one of these SVT (rapid heart beat) episodes she's not gonna die :) Her body and her heart can handle all of this ... we're just lucky enough to have actually caught it and diagnosed it at such a young age. The concern is that the meds she has been taking aren't effective since she keeps having SVT episodes about every 10 days. This new drug (flecainide) is supposed to be much more effective, but can be a little more rough on the body. If Eva was going to have an adverse reaction, she would have it within 3 days, which is why we have to stay here while they monitor her. We are also being placed under the care of a new doctor who specializes in electrical issues related to the heart. Apparently he's a world renowned doctor, so we're lucky to have his support.

Once she left, we sat for another hour waiting for the hospital room. Still with a dirty diaper, but Eva was as happy as could be. She hasn't had a crying fit the entire day, which is pretty crazy for her! She has been smiling and giggling and kicking. She is learning to roll over, so she keeps squirming and making loud noises. She has been really fun to watch.

By 11am they finally checked us into a room. The resident doctor is the same one who has been on call during each of our visits. He's from Israel and as Jewish as can be. For some reason he has taken a liking to Corrie and I ... I think it's because I'm a pastor and she's an attorney. He'll often stick around just to talk about faith. He's going to bring in a cross that he laid on top of the tomb where Jesus was supposedly buried. Should be fun to see.

All this to say, we feel Eva is being very well taken care of.

The only bad news is that we probably won't get discharged until Thursday morning. This will make for one long week. We can't have any visitors, but some friends from our church (Flood) have organized people to bring us lunch and dinner for the next several days. Both of our jobs have been very understanding. Corrie will work from her laptop all week. I'm going to make all my regular appointments, but will spend most of my time here as well.

Through this we have learned that community is essential for survival. We could not make it through all this without your love and support and the incredible encouragement and blessing of our church. Hopefully this new drug will do what it should do and we won't find ourselves back here again. They still say that her condition isn't any worse than anyone else ... we just happen to be good at catching the SVT. 80% of kids grow out of it in the year ... hopefully that will be Eva. If not, it still isn't life threatening and most likely not life altering ... just something we'll have to track as she grows up.

Hopefully you can all breathe a big sigh of relief. I know we have.

Love,

Adam, Corrie & Eva

ps. Thanks Uncle Sam! I love my new mobile!!

Our first post!

Welcome to our blog. We will use this as a place to share anything going on with our family. Feel free to subscribe by clicking the link to your right (grandparents ... this is for you!) and you'll get an email every time we update.

More importantly, for those interested in Eva's recent heart condition, we have decided to post everything here. Those that want updates, can subscribe here as we'll stop sending out mass emails.

Thanks for being a part of our community!

I'm sure whenever Corrie starts writing these they'll get a lot more interesting.

Adam

ps. I'm going to post the past several updates regarding Eva's health. For those who want the full update, you can simply read through all the posts.

Eva Update #5

So we were hoping there wouldn't be any more of these ... but here's the latest news on Eva:


Since being released from the hospital in mid-December, Eva has had two more episodes with a rapid heart beat. Once while we were in LA with Corrie's parents on 12/26 and then another this afternoon. We were able to break her out of the episodes on our own and her doctor was "excited" that we are catching and stopping them.

The unfortunate news is that since she has had two episodes within 10 days, they now want to put her on a different medication. At 8am on Monday, we will be headed back to the hospital so that they can put her on the new medication and they will have to monitor her for 3 days! We are not looking forward to another hospital stay.

Emotionally this has really taken its toll on us. We are keeping the faith and remaining in relatively good spirits, but it is extremely difficult to adjust to life in the 'real world.' Corrie began working full time again this week and my work season is picking up now that students are back.

Pray for peace and patience. While we wish things were different, we have to learn to live in this new normal for our little family.

Thanks for journeying through this with us.

Love,

Adam & Corrie