Tuesday, August 25, 2009

33 weeks, 3 days

I know that at least one of my blog followers (besides Tim) knows why the phrase 33 weeks, 3 days is familiar to us.

Lauren arrived unexpectedly as a 33 week, 3 day preemie a little more than three and a half years ago.

Today, after 33 weeks and 3 days at CHoP, Lauren was discharged. She has a new heart, has recovered completely from the viruses, and is doing absolutely fabulous.

Today's fake smile for the camera:


The last time she was in a car seat -- 234 days ago:

She never misses a beat. When we walked down to the parking garage and I lifted her into the car seat, she asked for the exact CD that we were listening to when we drove up here last January. I better figure out where I put it so we can sing "This Little Light of Mine" the next time we're in the car.

God is good all the time, and all the time God is good!

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...
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