Tuesday, August 4, 2009

Happy New Year!

I've been thinking of writing this post for quite a while, months even. As the time grew nearer, though, it's taken on various forms in my mind.

I guess I'd better start back at the beginning. When Lauren and I came to CHoP, she started collecting Beads of Courage. It's a program for kids that spend quite a bit of time in the cardiac center here. They earn beads for various tests, procedures, and even for each night the spend in the hospital. We started her collection with this admission. Shortly after we strung the first beads on her necklace, I started thinking about going back and collecting a few of the beads to remember how far she had come prior to this stay. I used to keep a log of hospital admissions in the back of my calendar so that I'd be prepared when she was admitted and some resident stopped by the room at a quarter past midnight to ask how many prior admissions, dates, surgeries, etc. Prior to this January, Lauren had been in the hospital 20 different times, totalling 155 days.

As everyone has probably gathered by reading this blog, I'm a bit of a math nerd. In the back of my mind, I knew that when we finished thirty weeks in the hospital, she would have spent an entire year (365 days) as an inpatient.

As the 30th week approached, I was getting discouraged. Seven months is a long time to wait. I never doubted that God would provide a perfect heart for Lauren, and I never doubted his perfect timing. I had just lost that "maybe today'll be the day" feeling. Lauren's psychologist and Child Life specialist kept encouraging us, and they promised that they had plenty of optimism to share.

I really thought that I'd be posting Facebook status updates on August 4th talking about an entire year of hospital stays and trying to compose an optimistic blog entry to usher in the new year.

Instead, I spent August 4th playing with my miracle as she recovered from her long awaited transplant. She was out of bed and walking around the CICU that evening -- completely disconnected from her IV pole for the first time since January. (The full transplant story can be read on Tim's blog here and will hopefully be the subject of a later blog entry here.)

That evening, I actually started a blog entry. Believe me, it was full of joy, praise, and optimism. At that point, the whole transplant week was still a blur and it all seemed a bit surreal. We were rejoicing with how quickly Lauren was recovering from her surgery. In many ways, she looked so great that it hardly seemed like anything had happened. I started thinking about how Lauren may have spent a year of her life in a hospital room, but that now we were looking at a completely different life.

Lauren's first cardiac cath to check on her new heart went well, in fact much better than expected. All the numbers were in the "textbook range" for a normal heart -- something almost unheard of for a newly transplanted heart. Lauren moved back to her old room on the CCU side and was back on her tricycle. We started making plans for discharge, and it looked like we'd be leaving the hospital barely two weeks post-transplant.

Unfortunately, the joy and optimism and good news were rather fleating. Lauren somehow managed to catch not one, but two nasty viruses. It took a long, long time for her to bounce back to normal. She first ran a fever about two-and-a-half weeks ago, and today is probably the first day that I can say she's almost back to her normal activity level. In the midst of all of this, Lauren's emotions were all over the map. She was understandably fed up with all the pokes and prods and tests, and she just felt miserable much of the time. Her primary doctor keeps telling me that we were really, really lucky that she didn't get much sicker than she did. Adenovirus can be really severe, and she was at greater than normal risk for serious complications because her immunosuppressant drugs were at such high levels for the immediate post-transplant period.

And so here I am, nearly a month post-transplant -- 33 weeks into this hospital stay. I am optimistic, and I am seeing the joy in the little things. I guess I never really expected to exchange our Lauren roller coaster for a Sunday afternoon drive through the country. In some ways our days post-transplant will be easier. I never thought that we'd ever see such an "easy" medicine schedule. (It should be noted that easy is a relative term compared to the routine we were on for the past few years). In other ways, I think we're just beginning to understand what life will be like with a child that's immunocompromised.

I may not know what the future holds, but I know He holds the future. Moreover, I know that God is good all the time, through the calm and through the storm.

Happy New Year to Lauren and to all of us... wherever this journey takes us...


  1. I was thinking about you guys today and hoping all was well. I'm glad Lauren is starting to perk up from her viruses. Take care and know you're in our prayers.

  2. In some ways, going through the post surgery viruses must have been harder than the wait for the heart, huh? It is a journey into the unknown again...casting far away from the shore and into the deep...again! Lauren's life has been like that for you all, and it has to be so much harder for you when her spirits are down. I am praying that she will bounce back emotionally, too. I'm sure the transplant itself was enough to make her have to go through a big adjustment....so much trauma for such a little person! But she's extraodinary, and you and Tim are so faithful, serving our amazing God. You are right He is always good! I'm going to pray for her full recovery and for you and Tim to find a quiet peaceful place inside yourselves to rest and recover from all you've been through! Most of us have to recover from just making a move from house to house....that was hardly a blip on your radar screen! :)
    ((HUGS!)) Jerri

  3. You all continue to be in our prayers. Lauren is one strong little girl and I'm pretty sure she got that from her parents! ((hugs)))

  4. Lauren is a miracle! She has wonderful parents, siblings and grandparents. We pray for each one of you. We thank God for bringing this little angel so far! Our thoughts and prayers are always with you. Dean & Jeanine Bryce

  5. Christi, so good to get an update! I am sorry to hear Lauren had to deal with illnesses already post-transplant. Your blog post is such a blessing in the way you shared your thoughts; I appreciate it very much. I pray you and Lauren are out of the hospital soon and back at home with your family. Much love, Petrie

  6. Christi! Hi!

    I'm so glad it's over...the waiting. That really is the hard part. Now, on to more exciting things!

    I told Tim that when I had my second transplant, it was easier. I was more prepared emotionally, I think.

    I hope you can teach Lauren to keep her hands away from her face. I know for a 3-y/o that is easier said than done. But she must learn to always wash her hands before touching her face. For me, that has really kept the virus at bay. Luckily, I haven't been sick in five-years (knock on wood). :)

    Love you,

    Jill Y

  7. Oh, Cristi! I am shocked at my reaction to reading this... I'm about ready to hyperventilate as the tears come! You have such a way with words... such a way with life... such a way with glorifying God... Like Mary, He chose you! GIGATTAATTGIG!



Related Posts Plugin for WordPress, Blogger...