Thursday, July 30, 2009

And on the 204th Day...

...God provided a new heart for our little girl! The day began like most of the previous 203. I got up and went to work feeling tired, worn out, wishing it would end...I even came across a cool word that I hadn't used in a long time while reading an article: ennui. I even posted it as "the word of the day" on my Facebook status update. I went about my day and didn't give it anymore thought.

I left work a little early because I had to run by the church to take care of some stuff. Then I went home, changed clothes, and stuck my dinner in the nuker, thinking about what I needed to get done that night. Suddenly the phone rang. The caller ID said it was Cristi. At 6:30, I thought it early for her to be calling, but occasionally she calls me at odd times, so I didn't think about it too much. After all, why should I expect anything? It's been Groundhog Day for 204 days! But, after exchanging marital pleasantries, I hear, "So, are you up for a road trip?" "Come on, are you kidding me?", I respond. "I couldn't kid about that. You'd kill me!" "Yeah, but it's been so long! Do you really want me to come right now?" "Yes." "OK. I can leave in an hour."

I arrived at the hospital about 9:45. Lauren was just finishing up labs and x-rays, but still didn't know what was happening. We knew that if we told her, she'd never go to sleep, and she'd need her rest with the trauma to follow. Cristi did read her the transplant "storybook" from Child Life, though. Lauren liked reading that book. They read it several times that night.

It was great getting to hug Lauren before the big event. After putting her to bed, Cristi and I went and hung out with some dear friends from New Jersey that came over to keep us company. It was nice to be able to think about other things for a while, but strangely, neither of us had the uncontrollable wave of emotion we expected. We also talked to Lauren's doctor, who was away for the week at transplant camp. He told us the heart was not good -- it was perfect! Awesome! Then it was worth the wait! At midnight, we sent our friends on their way. We knew it was going to be a long night, because, at that point, the Philadelphia team still hadn't arrived at the origin to pick up the heart. The adrenaline was wearing off, too. I was getting tired. Cristi and I went back to Lauren's room to get a nap. At this rate, it would be morning before Lauren was out of surgery.

At 1:30, we woke up to find anesthesia in the room. I guess that heart travelled quicker than we thought. Cristi quickly woke Lauren up, who took one look at the anesthesia team and said, "My new strong heart?" Cristi told her, yes, it was time, and as Lauren's nervousness came on her, the anesthesia team sedated her. We walked her all the way to the OR. Her eyes were open, but no one was home. I suppose that was good. Well, here began the journey into the unknown...

We went back to Lauren's room to get some sleep. After just a few minutes (about 2:15), a nurse came in, introduced herself, and told us she'd give us hourly updates, but to expect the surgery could go 4-6 hours, possibly up to 10. At 3:30, she came back and said that they were ready to put the new heart in. At 4:30, she told us they were just finishing up -- after only 2 hours! That could only mean good news! At about 5:00, the surgeon came in and said that everything went extremely well and he was going to go extubate her (take her off the ventilator). We were shocked! That usually takes at least 24 hours! We found out later that that surgeon tends to be very conservative, which makes the extubation that much more remarkable!

At 5:30, we were finally able to see Lauren. She kinda woke up -- enough to mutter a little bit, but stayed pretty much out of it that whole day. The doctors said that they couldn't be happier! We couldn't have been either! So much culminated in that one moment: Joy over a successful surgery and transplant, the realization that the end of this portion of the journey is finally in sight, and the realization that it had only been a few short hours since a family had seen through the grief of losing their child to give ours the gift of life.

We continue to think about the donor family and to be thankful for their generosity. We received a package yesterday that allows us to send an anonymous thank-you note to the family. We can't wait to relay our thanks, tell them about our wonderful little girl, and how many people have been touched by her story.

Lauren continues to do well, and we've passed a major hurdle...but this story is far from over. As Lauren's cardiologist explained to us, we've essentially traded one disease (heart disease) for another (transplant disease). Obviously, one is a better option for life than the other, but she will be on a large drug cocktail for the rest of her life. Her immune system will be suppressed, which means it will be much easier to get sick. And, transplanted hearts don't last forever. We don't know how long it will last. What we do know is that hearts transplanted 15-20 years ago are failing now. Doctors have learned an enormous amount over that 15-20 years, but it's still fairly safe to say that she may have to go through this again. Wow! Hard to think about...

Lauren still has all of her other issues, too -- or at least we don't know how they've been impacted. We're not sure if her pulmonary hypertension has resolved with the new heart. Her cardiologist told us beforehand he believed it would resolve. We should have a good idea about that before Lauren comes back home. She still has poor muscle quality (i.e., not all her muscles are formed correctly). We can hope the new heart will at least give her more stamina that she can pair with her physical and occupational therapies to get stronger. There's also an on-going study that may give us some insight as to potentially helpful treatments. Finally, she's still completely tube-fed. We had a few weeks of working on eating prior to transplant. Unfortunately, Lauren didn't cooperate with the two swallow studies and they terminated the feed-a-Lauren program. Who can blame her? Who likes barium, or having a camera shoved up your nose and down into your throat? We're hoping to start working on that again before discharge. There are so many much to think I won't right now.

Instead, I will rejoice in the answered prayer of a hugely successful surgery and our family being reunited. We don't have an exact date yet, but we have a target timeframe. Lauren will remain in the ICU for 1-2 weeks, then she'll transfer back to the regular cardiac ward for another 1-2 weeks. During that time, they'll be constantly monitoring her progress. After discharge, she'll have to remain in the local area for another couple of months due to the high number of appointments. She'll have doctor appointments twice a week and several heart caths during that time. But that will taper off, and our family will once again be whole again -- probably around Halloween. That's about 10 months of being apart. In that time, our family has changed a lot. Lauren talks all the time now. She's like a little person with her own personality. Addison has turned into a full-fledged Tween while Cristi's been gone. Brennan's grown up, too. We've moved and Cristi doesn't know where anything is in the new house. There will be challenges reintegrating, but I'll take it. We have a date!


  1. Totally thrilled for you!--Suzannah

  2. So amazing!! I love being able to keep up with your family even though there are so many miles between us.

    Praise God and we will continue to pray!!

    Love to you all!!!

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  4. I think I started crying about the 3rd word in and then completely lost it when I got to the part about Lauren waking up and asking "my new strong heart?". I continue to lift you all up to God every day and thank Him for everything not the least of which is giving us this precious life in Lauren that we have ALL been blessed to know and will know for years to come.

    I have to say, I haven't ever been a big fan of Halloween. I like the holiday, sure and love handing out candy to the kids, but I never really got into it.

    Now...I can't wait for Halloween to get here. :)

  5. This "dear friend" has been reduced to tears! Thank you for sharing! Incredible God! Faithful followers! GIGATTAATTGIG!

  6. Hi--I know you have no clue who I am, but I've "known" Cristi for quite a few years on a homeschooling yahoogroup, and have been praying for Lauren and your whole family since before Lauren was born. I've been reading your blog (and Cristi's too, of course) since last year, not sure when I started reading, but have read all the way back. Anyway, Monday night a friend was visiting and I for some reason started telling her all about Lauren, showed her the carepage and the blogs, and we prayed for all of you. That night I didn't sleep well, kept waking up and could only think of Lauren. Tuesday morning (we're 7 hours ahead of you here in Cyprus, it was about midnight your time) I woke up to read at facebook that Lauren was about to go into surgery. I haven't been able to stop singing and crying all week, keep praying for all of you at all hours, and won't stop. Thank you both for being so transparent to the world, for being such an inspiration and witness of God's faithfulness. Your family is also responsible for my children getting a lot more hugs than usual...
    Oh, and I enjoyed your posts awhile back about Germany. :-) My husband is German and I lived in Germany for 17 1/2 years, we just moved to Cyprus six months ago.

    --Sheila Lange (aka Sheila in Cyprus)

  7. You don't know me, but I've been following Lauren's story for a few months now. I totally lost it when I ready "my new strong heart?"

    God is SO good all the time!

  8. Although we didn't get to know each other very well while we were at Fairfax, I kept up with Lauren's journey on her Care Pages site, given to me by Katherine Mc or LeAnn (can't remember). We have prayed for Lauren and are so glad to hear the good news. Savannah and Lauren are about the same age, and I cannot imagine watching her go through something like this. Your faith is an example to us all.

    On a side note, wouldn't it be great if all the people praying for Lauren could let the donor family know how much we appreciate their sacrifice? Wouldn't it be awesome to let them know how many people they do not even know are praying for their loss? I do not know if that is possible, but if I were them, it would make me feel comforted to know I was surrounded in prayer. I am sure there would be many people willing to send them a note...just a thought.

    We praise God for the blessings over the last few days and hope Lauren makes it home soon!

    Laura, Brent, Savannah, and Parker Mundie (sending up prayers from PAFB, FL)

  9. Dear Tim & Cristi,
    We were absolutely thrilled when your Dad sent the e-mail that Lauren was about to have the long-awaited surgery. Our family prayed through the night for you all. Thank you for posting some details. We praise God and ask him to keep your faith strong as you continue on the journey. Our prayers are with you always. Love, Dean & Jeanine Bryce PS-a great belated birthday gift for Tim!

  10. Sheila, you're not quite correct -- while we haven't talked, I've known your name through Cristi -- only I knew you as "Sheila in Germany"! Thanks for all your prayers and support. It continues to amaze me how many people around the world not only know her name, but pray for a little girl they've never even met!

    Laura, I do wish we had gotten to know each other better. :-( That's a great idea you had! We'll consider asking the folks that coordinate contact with the family (because it has to be done anonymously) to see if we could perhaps collect notes to send them as a lump package. If so, we'll put the word out.

  11. Hi Tim,

    So glad that things have been going well, and it so nice to know that you have a time in mind for when your family can be reunited.

    I too have been praying for the donor family. My heart breaks for them.

    Best wishes
    Jen in Oz

  12. I've been reading your story and have been blessed and encouraged to see your families strength during this hard God be the glory! I will keep praying for Lauren.

  13. Tim & Cristi:
    I am a friend of Caryn's and she shared your blogs & CarePage with me last fall so I've been keeping up with the Schwamb family since then. I am THRILLED to learn of the answer to the prayers of so many -- a heart for Lauren. Please know we continue to hold you all before the Throne and are confident HE holds you close in His everlasting arms! Thank you
    for allowing us to 'watch' your walk here. Blessings!