Through the Calm and Through the Storm

Faith lessons -- then and now

2009-10-04T21:32:00.003-04:00

I thought God had spent the past nine months or so teaching me almost all I needed to know about faith. I learned how to trust God with all the "big things" in my life. I practiced "faith" for days and weeks and then months as I waited in Philadelphia with Lauren.

I was wrong. I'm really just a beginner at figuring out this whole faith-thing.

Now that Lauren's back at home, God has different faith lessons for me -- lessons about having faith when it comes to the "little things." When I was lying on the sleep couch in Lauren's hospital room, I had absolutely no control of the situation. I really had no choice but to trust God and to have faith in his promises. I sang "You Never Let Go" and thought about the storms of this life. In some ways, it's easy to have faith during the storms.

This morning, I was able to worship back home at Fairfax. (Tim and I high-five in the parking lot between services as we swap Lauren watching duties.) As we sang through the first verse of "You Never Let Go," I remembered all the times that Lauren and I listened to that song and all the times that she asked me to sing "the part about the light." That line goes something like this: "I can see a light that is coming for the heart that holds on, a glorious light beyond all compare." I'll admit to at least a couple of tears as I sang and remembered how far Lauren has come in the past few months.

But then, as we sang through the chorus a second time, I started thinking some more (or rather, God started talking to me.) That song isn't talking about how God didn't let go of us in the past. It's also talking about how right now God is still holding us and how He will continue to hold us close until He can bring us home. He never did let go of me, and He never will let go of me.

I guess that's what I've been learning all this week. You see, it's one thing to trust God with all of the things that I can't control. It's quite another thing to trust God will all the things that I somehow think I can control.

A few people have asked me how my first full week at home went. It's a good feeling to be back home and to be back together as a family.

On the other hand, our family has a crazy life. The best analogy I came up with is that being in charge of my family is a lot like juggling while riding a unicycle. I can juggle (a little) and I used to be able to ride a unicycle. I never even attempted to do both; it just seemed impossible to me. My days last week were filled with three kids with various appointments, tube-feedings and mealtimes, a few activities, a half-dozen or more medicines, a handful of calls or emails to various specialists, a few more calls to our insurance company, laundry, grocery shopping, cooking dinner, a few miscellaneous errands, one child that I'd like to keep germ-free, and two kids with homeschool work to be done. For someone that had recently perfected the art of just "hanging out" in the playroom, it was a daunting prospect.

That's where faith comes in. There's a big part of me that thinks I should be able to handle all of that and then some. (There's also a part of me that wants to run and hide.) God never intended for me to leave the hospital and go my merry way all by myself. He always intended to hold me.

Perhaps the harder faith lesson for me now is to learn to trust God with all the little things, to trust that he'll catch the unicycle before I fall over or that he'll catch a few of the eggs that I'm juggling.

33 weeks, 3 days

2009-08-25T23:31:00.003-04:00

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!

Happy New Year!

2009-08-04T20:01:00.002-04:00

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...

While we're waiting...

2009-07-06T22:04:00.002-04:00

A few months ago I saw the movie Fireproof, and I'm once again reminded of the lyrics to a great song from that movie:

While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

As of today, we've been waiting for six months for Lauren to get her new heart.

A few weeks ago, Lauren's physical therapist did a gross motor assessment that didn't show as much improvement as I had hoped. I was also thinking about how Lauren's still not eating anything by mouth. I had such high hopes for what Lauren could accomplish while we were here waiting. After spending a while moping about what hadn't happened, I started trying to think about what sort of progress she has made.

In the past six months, Lauren has gained approximately 3 kg. That's roughly six-and-a-half pounds for those of you that haven't lived in a hospital long enough to start thinking metric measurements.

In the past six months, she's gotten 6-7 cm taller (roughly 2.5 inches). She needed a wardrobe change to go along with the changing of the seasons since we've gotten here.

Six months ago, Lauren walked into the playroom and worked some of the wooden knob puzzles. The ones where the cat piece fits into the cat-shaped hole. She struggled with putting together 12 pieces that made up a picture. Lately, she's easily finishing several 63 piece puzzles. The other day, an older girl (seven) tried to tell her that she couldn't pick that hard of a puzzle. Lauren proved her wrong.

Lauren's talking all the time. She was talking before we got here, but she's made huge improvements. Last night I walked into her room, and she started explaining how "IV team was coming up to flush my PICC line and that they didn't need to do a new IV, just fix the PICC line because the pump had been beeping."

In the past six months, Lauren's picked up quite a medical vocabulary. She knew most of the names of her medicines when we got here, but lately she learned that the often have a generic and a brand name. One night she made her nurse look up the generic name for Singulair. The only thing funnier than hearing her say "Montelukast" is hearing her talk about "Chlorathiazide or Diuril."

Unfortunately, in the past six months, Lauren's also learned to say "wutter." You know you've been in Philly too long when...

I've learned in the past six months that Lauren has an amazing memory. She's big on asking people what their names are, and she rarely forgets a name. For most of the people she sees regularly, she has some sort of "inside joke" with them. For instance, she knows which nursing student will let her draw on her gloves, which nurses will let her hold their ID badge, and which nurse will let her cut tape into little pieces. She calls one of the fellows, "Sticky Tape," which we think refers back to the night back in January when he commented on a Dora episode. Over the weekend, Lauren was talking to one of the nurses on the floor and remembered that she had helped us when Lauren accidentally pulled out her g-tube three months ago.

In the past six months, Lauren's gained a lot of strength (even if she hasn't picked up on many motor milestones). She regularly works out in the gym and is now up to a full 30 minutes on the treadmill. A few weeks ago, she was doing interval training. She'd be walking at her normal pace, and then they'd turn the speed up so that she was jogging for a minute or so. She'd recover at a walking pace for two minutes and then they'd increase the incline so that she was climbing uphill.

Even when Lauren's not in the gym, she's always on the go. I clipped a pedometer onto her pants a week or so ago for fun. She hit a little over 15,000 steps that day. Color me impressed!

Another big accomplishment is that she's starting to jump a little bit. Yesterday afternoon, she was doing quite well and got her feet slightly off the ground a time or two. She has to count, "One, two, three, jump" or it doesn't count, though.

Lauren's made many, many art projects in the playroom. We've been encouraging her to write at least an "L" so that her pages will have her name on them. Even though she can only write an L, she can now spell her first name.

In the past few weeks, Lauren finally convinced me to share my laptop. She can now type her name by herself and play a few online games. I was impressed with just how quickly she picked up on various mouse skills and how quickly she's learned to hunt and peck when I spell words for her to type.

And, finally, I can't think back on the past six months and not marvel at how much her imagination has blossomed. I think that's what Sunday afternoons with nothing going on will do to us. Much of this past weekend was spent picking imaginary apples in the empty unit down the hall. We then got some plates and plasticware out of the kitchen so that we could bake apple pies to share with most everybody on the floor.

About a month ago, Lauren asked one of the nurses to juggle for her. He asked what he should juggle, and she answered, "Pagers." He responded that he only had one and that she's have to go find two more that people didn't mind if theirs got dropped. She turned around, pretended to pick something up off of a nearby counter, and handed him two imaginary pagers. Yes, I was laughing out loud when he then juggled the "three" pagers by tossing his from side-to-side.

Another line from John Waller's song "While I'm Waiting" is "I'm waiting on you Lord, and I am hopeful."

We are hopeful tonight and every night. I know that God has a perfect plan for Lauren and for all of us. I read Isaiah 30:18 last week. "Yet the Lord longs to be gracious to you... Blessed all all who wait for him!" The Message translates this verse slightly differently, "But God's not finished. He's waiting around to be gracious to you. He's gathering strength to show mercy to you. God takes the time to do everything right - everything. Those who wait around for him are the lucky ones." One of these days I'll be able to remind Lauren of all the ways God blessed us while we wait.

A glimpse...

2009-06-03T20:22:00.004-04:00

A week or so ago, Tim stole my latest cute Lauren story and posted about it on his blog. http://simplefamilycomplexlife.blogspot.com/2009/05/candid-conversations-with-three-year.html

I was blessed this afternoon to witness another incredibly hysterical glimpse into Lauren's brain and to see how she's processing everything.

After not-naptime this afternoon, Lauren started playing with the dollhouse that's temporarily moved into her room. She told me I needed to talk to Sara (one of the transplant nurse practitioners) and handed me the Daddy doll. OK -- I'm game for playing along.

C - "What do I need to talk to Sara about?"
L - "The cath lab."

Now I realize that someone's probably heard too many people making veiled references to an upcoming trip to the cath lab. No better time than the present to start working through it and preparing ourselves.

My discussion with Sara went on for quite a while. Soon Lauren was pulling more characters into the story. Apparently, dollhouse-sister needed to go to the cath lab. Dollhouse-mom finished talking to Sara (dollhouse-dad) and also talked to Dr. K (female cardiologist played by a My Little Pony), Patsy (another female nurse practitioner played by a small rag doll), and Dr. S (male cardiologist played by a blond Kelly doll). When Mommy pushed the bed down to the cath lab, we found Dr. H (another male cardiologist) who was being played by a frog. After the cath, dollhouse-sister moved to a "yellow room".

Along the way, we're talking about how the room will be on the other side of the building (CICU versus CCU) and about how dollhouse-sister's not scared and so on.

Later, our child life specialist Meredith comes in and gets to join the fun. About that time, Lauren decides that it's time for dollhouse-sister to have an operation and get a new, strong heart. Once again, Mommy gets to push the bed to the Operating Room, talk to the doctors, and so on. Thankfully, I'm joined this time by Daddy. (Unfortunately, the only character left to play the Daddy role was a wind-up seal.) Meanwhile, dollhouse-sister is lying on the bed in the Operating Room with Meredith (a small, blue plastic teddy bear) holding one hand and a dalmation puppy giving sleepy medicine through her PICC line. Lauren pretended to lift up sister's shirt, took out the sick heart, and put in a new, strong heart. Then Mommy got to push the bed back to the yellow room.

Thankfully, dollhouse-sister recovered quite nicely and went home. Daddy (the seal) drove the car (stroller) to the new house.

All told, we probably spent nearly an hour playing "cath lab." How wonderful it is to have such a vivid imagination and to be able to cope with all that she's had to learn lately!

Springtime (at last)

2009-04-18T22:04:00.011-04:00

I'm not sure how I feel about starting a new season in Philadelphia. Warmer days are sort of clashing with my whole Groundhog Day mindset. Nonetheless, we've finally had a few days of spring-like weather to enjoy here, and I might grow to enjoy springtime up here.

Over the past few weeks, we've had a child-life intern working on our floor. He will be greatly missed. Yesterday was his last day, and four of the patients (pretty much everyone that felt up to a field trip) got to go outside for a small farewell party.

I promised several people that I'd share pictures of the "big outing".

I couldn't help but post a picture of just some of the crowd and our assorted equipment. There were four patients, four parents, three portable monitors (note that portable does not necessarily mean easy to carry), two IV poles, a wagon, a tricycle, two nurses, three people from child-life, an oxygen tank just in case, bubble mix, a kite, and two cans of silly string.

It was absolutely gorgeous outside, even if it was a bit sunny for the little ones who hadn't been out in quite a while.

While we were outside, Meredith, one of our child life specialists, decided it was a perfect day for ice cream. Since Lauren hasn't ever had any milk products before, I decided that it wouldn't be the smartest of ideas to let her have a sundae. Instead, I told her to just bring a cup of water from McDonalds. She looked at me doubtfully, but it worked. Lauren was absolutely thrilled with her cup of water, even if she can't drink out of a straw yet. When we got back inside I even had to pour the "McDonalds water" into her sippy cup so that she could carry it around with her the rest of the day and try to sip it.

We were doubly blessed with another gorgeous day today. After Lauren's nap, we were sitting in the playroom, and she asked me if today was a "going-outside" day. Meredith overheard her asking and decided to see if it would be okay to do a repeat performance again this afternoon. (The doctors have to approve her going off the floor, there has to be enough nursing staff, etc, etc.) We took less people this afternoon, and it was wonderful to watch Lauren just relaxing in the sunshine.

I think I could get used to these sorts of days.

Three month mile marker

2009-04-07T10:20:00.006-04:00

Once again, I can't manage to combine a slideshow and comments in the same post. Instead of continuing to struggle with it, I'll just leave it be as two posts.

In no particular order, I've chosen some of my favorite pictures taken while Lauren's been in Philadelphia so far.

PS -- Tim, I'll get you a band-aid picture on the next "poke day". Katherine, you can tell Nelson that the rainbow picture was taken out of Lauren's room. We'll post more pictures of her room for him soon.

Count your blessings...

2009-04-04T22:43:00.004-04:00

It's been kind of a rough week in Philadelphia. Tomorrow is Hospital Day #91, a full three months since we got here. I think the wait is starting to get to all of us -- Lauren has started screaming at the sight of anyone in surgical garb (mask, hat, blue scrubs). I have three knitting/crochet projects in progress and at least a couple books, but I'm pretty much bored with them.

Medically, there are a few little things that are popping up here and there. She's actually been hooked up to EEG wires (20 something of them glued to her head) since last Thursday in an attempt to figure out why she was falling so often. Of course, she hasn't done it at all since then. Overall, she's stable, and we're grateful that she's still doing so well while we wait.

Instead of focusing on all the little things around here that are starting to get on my nerves, I've decided to "count my blessings" and I'll share a few tonight.

1. Internet: We have wireless internet throughout the hospital. That means that I can at least keep somewhat in touch with everybody. Tim jokes that I get all my news via Facebook. That's not entirely true -- sometimes I open the free Metro newspaper that I pick up in the mornings. Wireless internet also means that I can watch movies and TV shows after Lauren goes to bed.

2. Child Life: I'm really not sure how well we'd be doing if we didn't have the Child Life specialists to help plan activities, provide toys, hold our hands during procedures, advocate on Lauren's behalf, and so much more. Last Friday night, one of them kicked me out of the playroom and stayed late playing with Lauren so that I could eat dinner with Tim.

3. One of the top hospitals: As much as I do worry about Lauren's condition, I know that she's getting the absolute best possible care. Every night I fall asleep knowing that someone will watch over her while we sleep. (Even better, they are so incredibly quiet through the night that I don't even notice their comings and goings.)

4. Awesome grandparents: Addison and Brennan are doing quite well, and we're very thankful for the help of Oma and Col. Opa, and Nana and Papa. Both Nana and Oma tell me how much the kids are learning in school, how helpful they are being, and how much they're eating.

5. An outpouring of support from all over: It is such a comfort to know that there are people all over the world praying for Lauren, and we truly feel loved. We've received all sorts of care packages to make our stay easier. I could go on and on, but I'll just share one small story from this week. The other day, Lauren was coloring with markers in the playroom. I later realized that we had coloring pencils, watercolors, crayons, and coloring books, but no markers. I figured that I could pick some up the next time I went out. The next night, I was trying my hardest to keep Lauren on a mat in our room so that she wouldn't get hurt if she fell. We opened a package that contained not only markers, but also glitter stickers and jewels that provided enough entertainment to last for more than just that evening that I was trying to fill.

There are so many other blessing I could list. Things like a night with no line at the washing machine, a good BLT sandwich from the street vendor, the one time last week that the cafeteria got Lauren's meal order correct, the joy on another mom's face when I found some Diet Dr. Pepper to share, good chocolate candy, bunny ears on top of the EEG wrappings, glitter art projects hanging on the walls, Rock Band photos, a jar of white chocolate peanut butter, and so much more.

I've gotten a bit bored of just taking photos of Lauren each day. Maybe I should expand my horizon and take pictures of the little things that I'm grateful for each day.

Please, Daddy?

2009-04-01T09:54:00.003-04:00

Look what I'm learning to do in the playroom these days. I think I'm going to need one of my own. Please?!?

Maybe not...

2009-03-12T21:43:00.003-04:00

I assume that most of the people that have stumbled across my blog have already heard our not-so-big news via facebook or on Lauren's carepage.

I can't help but think of Paul Harvey as I share "the rest of the story."

Honestly, this week has been awfully tough on me. It's been a little thing here, some other thing here, and just the never-endedness of it at times. I stayed up late last night chatting with Tim so that we could straighten out all the everythings that are going on at home. As luck would have it, Lauren woke up super-early. Our morning schedule kind of fell apart, and we were just hanging out in the playroom looking for the elusive "something else" to keep us busy. One of the child-life specialists even asked me how I was doing because I looked so out of sorts this morning. (She later told me that she thought that was the first time I looked upset and actually admitted it to her.)

Around 10:30, the transplant coordinator stopped by to tell me that something was in the works. Of course, we've been warned time and time again that there may be false-starts. I called Tim, but I was cautiously guarded for some time. They said they'd know more in about an hour.

Several hours passed without much more news. Meanwhile, Lauren's feeds were held and IV fluids started so that she'd be ready for surgery.

The longer I waited, the more excited I got. I knew that no news meant that things were still going well and nothing had stuck out as a reason to turn-down the heart.

By late afternoon, a good five hours after I first heard about the possibility, Lauren's primary cardiologist was looking quite excited. I actually can't ever remember him looking excited or pleased -- ever. He walked by once and just nodded his head. I kept hoping and praying.

By four o'clock, I was quite optimistic. Dr. H looked at me and said, "It's a go." At about the same time, he turned to the cardiology fellow and told him to activate the orders. I joked that it sounded like a nuclear attack.

Unfortunately, less than an hour later, the coordinator came back to tell me that they had decided against the heart after all. I was a bit too shocked to get all the details. Apparently, they were waiting on the last lab tests to come back, the ones for the off-the-wall stuff that never comes up positive during these screens. As soon as she heard what the result was, she knew it was a no-go. Both of the transplant surgeons agreed. I called Tim and stopped him just minutes before he was going to board a train to come up here.

It's been an emotional rollercoaster to say the least. I really don't know how I'm feeling. When I heard that it wasn't going to happen today, the transplant nurse coordinator asked how I was doing. I, of course, answered that I was okay, it'll be okay. I'll never forget that she just looked at me and said, "Liar." She was right.

As I've been typing, I've been playing a song over and over on the computer. I started this blog remembering the song "You Never Let Go." Lauren and I listen to that song often.

Tonight, I'm listening to John Waller's "While I'm Waiting" from the movie Fireproof.

I'm waiting! I'm waiting on You, LORD!
And, I am hopeful. I'm waiting on You, LORD!
Though it is painful. But patiently, I will wait.
I will move ahead, bold and confident,
taking every step in obedience, while I'm waiting.
I will serve You, while I'm waiting!
I will worship, while I'm waiting!

I really don't know what all I'm feeling tonight -- I'm tired, I'm frustrated, I long to be like the precious three-year-old who was for the most part oblivious to all the excitement and spent the day making glitter messes in the playroom, I wish I were home and not giving Brennan extra hugs over the phone when he couldn't fall asleep, I'm still hopeful, I'm perhaps more hopeful than I was a week ago when this all seemed forever away, I'm wishing that my magic 8-ball would give clearer answers, I'm definitely not giving up hope...

Most of all, I'm confident that God has a plan and that he is in control. A good friend reminds me that God is Good all the time, and all the time God is Good -- GIGATTAATTGIG.

Tomorrow, I'll be moving ahead... while I'm waiting. I pray that I'll be bold and confident. At the very least, I pray that I'll be able to keep moving along fast enough to keep up with a certain three-year-old on a tricycle.

Maybe?

2009-03-12T15:58:00.001-04:00

I just posted an update on Lauren's carepage. The latest word from the cardiologist is "It's a go" and then he turned to the fellow and said, "Activate the orders."

We'll keep you all posted and welcome your prayers!

Unfair!

2009-03-02T10:37:00.003-05:00

I'm not normally one to complain, and I rarely say that something's unfair. I couldn't help but whining a little bit this morning.

Lauren went down to the cath lab around 10:00. Tim usually walks over to Starbucks during her heart caths while I wait behind. Since he's not here today, I decided to brave the cold and go get a latte by myself. Of course, there's a thick layer of slush on all the sidewalks, the wind is blowing in my face, the snow is still coming down, yada, yada.

As I leave CHoP, I called Tim's cell phone. It immediately rolls over to his voicemail. There's only one reason for his phone to be turned off this morning -- his flight left on time and he's in the air... to Tampa.

I think I have the right to say it's unfair today. Fortunately, the wind was at my back on the way back to the hospital and I have a good cup of coffee now. All's good.

The Good, the Bad, the Exciting, and the Really Funny

2009-02-24T22:46:00.011-05:00

I've divided my long-overdue update into the Good, the Bad, the Exciting, the Funny, and the Really Funny.

On a good note, Lauren's remained stable health-wise. She's still on a continuous infusion of Milrinone into her PICC line. Over the weekend, her chest x-rays looked a bit worse than usual so they've been tweaking some of her meds. Overall, nobody seems too concerned about how her heart is holding up. She had an echocardiogram done earlier this morning, but I haven't heard the results yet. We know that it won't ever look "good" but I'm praying that it's still "stable."

She's still getting used to the idea of lollipops. She's happy to play "peak-a-boo" and put them into her mouth. She's not too thrilled with the idea of actually tasting anything. One of her favorite things to do is to have me take pictures during her sessions with the speech/feeding team.

In addition to her sessions with occupational therapists and a physical therapist, she's added in "gym time" with Dr. Mike, an exercise physiologist that works with the cardiac patients. She lifts weights, and he even got her on the treadmill for a while. She wasn't thrilled the first day, but yesterday she walked for 5 minutes.

Perhaps the biggest news on the sixth floor is that the physical therapist let Lauren ride a tricycle last week and then left it for her to continue riding. She spends most of her days doing laps around the floor with most of the doctors commenting about how she's like the Energizer Bunny -- she just doesn't stop. Yesterday, she was going practically non-stop all morning long, and I had to pull her off the bike for a three hour nap.

The bad news is that there's a nasty virus (norovirus) running rampant around here these days. In order to stop the spread, the cardiac floor has shut down the playroom, closed the family lounges, and limited visitors. I was too afraid to let the big kids come visit last weekend, and it later turned out that they wouldn't have been allowed up here anyway. We hope these extra precautions will be short-lived. (Unfortunately, I can hear the crowd downstairs in the ER as I type this update.) Thankfully, neither Lauren nor I have gotten sick -- we're becoming quite fanatically about handwashing and it helps that we're sequestered up on the cardiac floor, not roaming about too much.

Yesterday's exciting news came when Lauren was asked to pose for some pictures for CHoP's marketing department. They didn't have a specific job in mind, but they'll keep her pictures on file to be used when something comes up. Lauren had a blast posing for the camera. They took some shots of her in her bed right after she woke up from her nap. Then we let her out in the hallway on the tricycle. The photographer took tons and tons of pictures of her riding around with a big grin on her face. At one point, Lauren even took remote directions when he went to the other side of the building and to take pictures of her riding across the bridge. I saw a few of the cute pictures while they were here, and I'll get a CD of all of them in a few weeks. I can't wait to share them.

I've been collecting some of the funnier moments to share. For instance, the other night one of the nurses noticed that she knew all of her colors and asked if she went to preschool. Lauren answered, "No, just to the playroom." (I thought it was particularly funny that the student nurse was impressed that Lauren knew the colors of the heart leads and missed the fact that Lauren knew where to reattach all the wires.)

The other afternoon, Lauren talked her nurse into letting her hold her pager. One of the respiratory therapists was sitting out in the hall and noticed Lauren with the pager. It was just too tempting so she sent a text page. I wish I could've gotten a picture of Lauren's face when the pager started beeping and vibrating in her hand.

Lauren's funniest moment so far this week was just a few minutes ago. One of Lauren's favorite nurses is taking care of her tonight. We had walked down the hall to tell him that she was getting into the shower. He checked some of her IV pumps and since it was the beginning of a new shift, asked her what her name was. She looked up and said, "Goof-ball." (He's known for walking into her room and saying, "Hey, goofball.")

And, lest anyone think that Lauren has a corner on the funny moments, I'll share one of my own. I've often thought it was funny that one of my favorite lunches is to get a lamb gyro (a Greek sandwich) from the Oriental couple that runs a particular food stand in the parking lot across the street. Yesterday, I walked over and some guy started talking to me in line. Being from further south than Philadelphia, I politely responded and we chatted a bit back and forth while waiting for our food. As I walked away, he followed after me and asked if I was ever free on the weekends. I guess hospital life isn't treating me too badly if the guy that drives a cement mixer is trying to ask me out.

Thank you to everyone for your prayers and words of encouragement. Some days are definitely harder than others up here. It's slowly dawning on me how long this might take and how long our family is going to be split apart. I'll keep taking it one day at a time and keep looking for the bright moments to cherish.

A big day!!!

2009-02-17T08:13:00.005-05:00

Lauren's still not sure what she thinks of the whole idea. She'll play games hiding the lollipop in her mouth, but she's not thrilled when it touches her tongue. I keep reminding myself "Baby Steps."

It was so much fun this morning to let her pick out a lollipop for breakfast when I had another McMuffin.

For Lauren's new friends, she hasn't been allowed to eat anything by mouth since November 2006. This is a big step in the right direction.

I'm just so proud of her...

2009-02-04T20:52:00.003-05:00

I wondered how well a three-year-old would cope with an extended hospital stay and all that goes along with it. I'm finding out that this little girl is even more amazing than we thought. She's rapidly adjusting to our new schedule and is impressing everyone with how much she picks up on.

Every morning, she wakes me up (bright and early) asking for a Dora video. Once the portable TV is in her bed, she tells me to go get a shower. When I check back in on her afterwards, she suggests that I go get breakfast while she watches another Dora show. Thankfully, after the morning Doras, we get a TV break until lunch-time. In some ways, I can mark the passage of time by how many Doras we've watched. :)

She copes so well with all the medical "stuff" that I can't help but be amazed. She's helps the nurses push all of her meds through the g-tube and reminds them if they forget to do anything when they check vital signs. She has her own stethoscope, and this afternoon she looped it around her neck and walked back to the playroom to listen to her baby's heart.

Yesterday was her second attempt this week at getting enough blood to run labs. Our child-life specialist suggested when we got here that we take her to the treatment room to do anything uncomfortable. It really does help her to know that her room is a "no pokes" room. Anyway, she was doing occupational therapy in the gym yesterday morning when they came to get her for the blood draw. She immediately knew what was going on when we left to go to the treatment room. She also knows exactly what she's entitled to when they draw labs. She specifies that she prefers to sit up and will even tell the phlebotomist which arm (or foot) would be better. She knows to ask her nurse for the Dora band-aids, and she knows Miss Meredith will bring the special "poke toys" to distract her. Of course, she also tells Miss Meredith to put away the "poke toys" when we're done because she doesn't need them anymore. After two failed attempts at drawing blood yesterday, she hopped down off the table and scurried back to the playroom to claim more stickers for her collection.

I'm torn. A three-year-old shouldn't have to know the system this well. On the other hand, I can't help but be just as proud as I can be that she faces everything so bravely. She's definitely one special girl!

Slideshow Explanation

2009-02-02T21:02:00.002-05:00

For some reason, I can't manage to insert both words and a slideshow on the same post. Instead of posting a huge update with all of the latest pictures, I turned them into the slideshow below. It's some of my favorite pictures to depict the past week or so at the hospital. It includes the fun we had while stuck in the room on contact isolation, the exciting first trips to the playroom, and the precious snuggles with family. One other exciting picture is of Brennan enjoying an Egg McMuffin for breakfast after outgrowing his allergy.

Thanks for following our story and praying for all of us!

Day-by-day update

2009-02-02T20:49:00.001-05:00

Happy Birthday Big Girl!

2009-01-20T21:08:00.008-05:00

I think all of us were eagerly awaiting a day that we could spend together as a family. Once again, I'll post pictures instead of describing the play-by-play action. Fortunately, since we had three digital cameras with us today, we have a few photos -- a little over 200 by my count. Don't worry; I'll only post about half of them. :)

The big kids brought posters to decorate Lauren's room. Even tonight she was pointing up at them and telling me that Brennan drew Boots and Addison drew Dora.

We all gathered around in Lauren's room and opened presents this morning. She was so excited. Every once in a while, she seemed a bit confused about what we were saying. We finally realized that when we'd say that the present was from so-and-so, she thought they should open it. I think she was remembering back at Christmas when she had to take turns unwrapping gifts.

After lunch, Tim, the big kids, and I headed off to the Franklin Institute to see the Chronicles of Narnia exhibit. Sadly, I only have one picture to share from our afternoon:

I honestly thought that Tim was going to break down in tears when we got to the "No Photography" sign. Nevertheless, it was a wonderful exhibit -- lots of real stuff to see from the movies and enough hands-on stuff to make it fun. Addison and Brennan both thought one of the highlights was sitting on the White Witche's throne. It was actually ice-cold.

While we were away, Lauren kept Nana and Papa busy with tea parties, playdough, books, and all of her new toys. I'm not sure what was better for Lauren -- new things to play with or new people to play with.

We're not sure what happens once you've been knighted by the ladybug fairy:

Of course, no birthday celebration is quite complete without a cake and candles to blow out. Nana and Addison did a great job baking and decorating a cake for us to enjoy.

It was a wonderful day spent together -- lots of smiles, cuddles and fun!

And then, sadly, it was time for one more story from Daddy and one more giant hug from Brennan, and we had to part ways for a while longer.

Picture Update

2009-01-18T20:31:00.023-05:00

To make up for the dreadful lack of pictures in the last update, I'll include more tonight -- sort of a peek into our life at CHoP. I'm still working towards my goal of collecting at least one picture per day to put in an album.

January 9, 2009

January 10th and 11th. On Sunday, she felt well enough to stand up and play for a few minutes at a time.

January 12th -- One of Lauren's hospital "quirks" is picking out which diaper we use. All of the Pampers have Elmo on the back, but only some of them have Elmo on the front. She's quickly developing a Sesame Street heirarchy as to which diapers out of the package get used first. Oddly, Zoe is the lowest on the totem pole.

January 13th -- Art Therapy

January 15th -- Singing her favorite song "This Little Light of Mine" and later picking out her instrument during music therapy

January 16th

January 17th -- reluctantly playing "Peek a Boo" with me so I can take a pictures. She's far more interested in seeing the digital images on the camera than posing.

January 18th -- Praise and Worship Music; Lauren kept requesting You are God Alone (the EverPraise version so she could hear Daddy).

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A "movie" day

2009-01-16T21:26:00.003-05:00

Today was filled with much drama and a healthy dose of comedy -- hence I've dubbed it a movie day.

Late yesterday, I was hooking up Lauren's g-tube for a feed and realized that the extension wasn't spinning around the button quite right. From past experience, I knew that it was only a matter of time before the button became unusable. Not only unusable from a feeding perspective, but it would've left an open hole in the button for stomach contents to come back out of. (If you haven't already figured this out -- it might not be a wise idea to read my blog when you're eating.)

Lauren's nurse talked to the nurse practitioner for the transplant service who had thankfully had quite a bit of prior g-tube experience. She felt comfortable trying to remove the old button, but it wouldn't come out. We used half a roll of tape to secure it all together and hoped that it would last through the night.

This afternoon, two other nurse practioners that deal with g-tubes all the time came up to see if they could do a button change. Again, the old button wasn't coming out.

By now it was nearing mid-afternoon before a holiday weekend. The nurse practitioner thinks that maybe it can be done in Interventional Radiology (because they'd be able to see what was going on inside the stomach instead of just working blindly). Unfortunately, Lauren's cardiologist didn't want to use any sedation while doing it. I have no idea how we would've pulled that one off -- Lauren was already freaking out about changing the button in the first place. The IR suite would've really freaked her out.

About this time, one of the surgical np's decided to call the surgeon on call (who coincidentally has operated on Lauren three times in the past). He basically told them that they were all wimps and he'd come see what he could do.

Sure enough, he got the button out with very little trouble. Lauren did a great job as well. She was understandably upset with everyone messing with her tubey, but she cooperated and was just so brave. She's been such a trooper through all of this stuff.

So that's the drama for the day. The comedy came when I realized that it has been several days since Lauren took a bath. She was none too impressed with the bathtub in our previous room and wanted no part of trying out the shower in our new room. I told her nurse that I thought she'd be okay with it after the first time so I was just going to be the mean mommy that threw her in the shower tonight. It has a hand-held sprayer so I figured that even if I just hosed her down a little, it'd be better than nothing.

I started the water so that it'd warm up to a decent temperature, and we try to wrestle Lauren out of her clothes. I'm negotiating who is going to remove the heart monitor stickers, and her nurse is getting ready to wrap her PICC line in plastic to keep it dry. About this time, the sprayer falls off it's perch in the shower and starts spraying all of us. Lauren's nurse and I both got quite wet. Thankfully, Lauren was turned in such a way that the PICC line stayed dry.

In the end, Lauren decided that the shower-torture was not quite as bad as it first seemed. When she got out, I wrapped her up a towel and picked her up so she could see in the mirror. We do this at home, and I always call her "my little baby." She giggled when I did that tonight. I guess I was forgiven for shower-torture this time. We'll see what happens next week.

A very merry un-birthday

2009-01-14T20:36:00.030-05:00

I was thinking sometime in the middle of the night last night about how three years ago I was lying in a hospital bed. Little did we know that I'd spend two more of Lauren's birthdays sleeping beside her in a hospital. (I was a lot more comfortable on my sleep-couch last night than I remember being when I was at Bethesda trying not to deliver Lauren.)

It was a quiet morning at the hospital for Lauren and me. The Child-Life team brought in a big sign this morning. Lauren was excited when she saw the "L for Lauren," and she caught on quickly that she was now 3.

Our Child-Life specialist had asked if we wanted to acknowledge her birthday today or if we just wanted to save it all until next week when the big kids came up. I realized that we'd never be able to stop everyone from noticing/commenting that it was her birthday. In my mind, today was her "unbirthday" and we'd really celebrate on the 20th.

By some strange coincidence, Lauren didn't have any scheduled activities today -- no art therapy, music therapy, physical therapy, occupational therapy, nothing. We had a lot of tea parties this morning, instead.

By lunchtime, I was starting to go stir-crazy and Lauren was starting to get tired. She snuggled up beside me on the couch to watch Dora. She then asked me to put a pillow in my lap so she could lay down. I gladly let her. When she fell asleep, my arm was resting on her and she had wrapped her fingers around one of mine. I couldn't help but remember when she was so tiny and so sick in the NICU and how excited we would be when she'd "hold our hands." I also remember praying that we'd have many, many days together after she left the hospital.

God does answer prayer. I held my answered prayer in my lap and thanked God for letting me snuggle with her on her third birthday.

I woke up some time later wondering how many more tea parties we'd have before bedtime and how many Dora movies it would take to pass the time. I wasn't sure I was ready for more play-dough cookies. And, honestly, I was a bit sad to be spending her birthday alone with her in the hospital.

I should back up a moment to remember a message I sent to a dear friend we knew several years ago. She asked what kind of support system we had in Philly. I simply responded that I was counting on God to provide a support system. At times like these, faith might be all I have left but it's more than enough to see us through.

And so today, God provided a sunshiney afternoon for both Lauren and I. Shortly after I woke up from Lauren's nap, my friend Lynda came by with presents, decorations, and milk-free cookies for mommy. We've know each other for several years, but most of our interactions are online.

A little while later, we had new friends show up. Steve and Patti Sikes came over with surprises for Lauren and me as well. God has a way of putting people in just the right places at just the right times. Sometimes I'm amazed at how small our world really is. My good friend back in DC, Vanessa, was visiting her Uncle Steve and Aunt Patti several weeks ago and told them about Lauren. They live near here and offerred to come visit. As we all talked, we realized that Tim actually knew Steve's brother years ago in Oklahoma. (See what I mean about small world.)

Afterwards, the child-life team brought in presents and sang Happy Birthday. By this point, Lauren was really getting into the hang of this birthday thing.

And so it was a "Very, Merry, Un-Birthday" to Lauren. We celebrated a happy, healthy day today with lots of fun and surprises. What a big girl she's becoming! We are truly blessed!

Settling In

2009-01-08T21:18:00.015-05:00

One of the reasons I started this blog was so that I could have a place to record all the big and little events of Lauren's transplant journey. I'm also taking lots and lots of pictures. The other day I read about a scrapbooking challenge to take a picture every day in 2009 and make them into a scrapbook. I didn't start on January 1st, but I think it could be a great project to chronicle this hospital stay. I figure that if I post the pictures here and record some of the stories, then I'll have a good jump-start on turning it into an album someday (perhaps I'll have some free time in late 2013).

I guess a bit of background is in order so that everyone can appreciate the first picture. Our small group at church meets every Sunday night and shares prayer requests. It became our tradition to go around the circle with everyone taking a turn. Occasionally, someone would say, "I've got a LIG." That stands for "Life Is Good" -- basically, that there's nothing special they'd like to request prayers for.

Some of you may have heard about our crazy August. Brennan was admitted to Walter Reed for a three-day video EEG that showed epileptic activity. He was discharged late Wednesday night. On Thursday morning, Lauren fell out of her seat at the kitchen table and broke her arm. I headed to Philadelphia to have it set. On Sunday, Tim's turn came during prayer requests. He calmly said, "Life is Good." I was sitting next to him, and I thought that it was the funniest thing I had heard in a long, long time. I just couldn't stop laughing.

Afterwards, I remembered a company that makes t-shirts and other items with the "Life is Good" logo. For my birthday, Tim got me the t-shirt I strongly hinted that I just had to have. (It's chocolate brown, and the "life is good" wording is printed underneath a steaming cup of coffee.) For Christmas, my little sister gave the whole family shirts. We decided that we should all wear them when Lauren went to the hospital.

And so, pictures of the kiddos in their shirts the morning that we left:

The original plan was for Tim to drive up to Philadelphia with us, but he managed to get a better offer for that day. (Be sure to see his blog for pictures of the President.) Lauren talked me into letting her control the music choices for most of the drive. Her favorite was singing "This Little Light of Mine." The version she likes is on a CD from a musician that routinely plays for the children at CHoP. I think Lauren will be thrilled when he comes by next week. When we stopped for lunch, I managed to get a picture of her performing.

Tim has joked that I packed for this deployment with military precision. I have him fooled. :) But, actually, I did have a plan for getting all the necessary stuff into the hospital without being too loaded down. My plan went out the window when Lauren decided that she was going to walk instead of riding in the stroller. Baby ended up riding in there, but she doesn't weigh enough to let me hang stuff from the handles of the umbrella stroller without it tipping over. I carried several bags and helped Lauren push Baby up to the cardiac floor. She walked right up to the front desk of the CICU and told them her name.

Of course, as soon as we walked back to a room, Lauren starts protesting, "No pokes!" She's sadly been up here too many times and knows what to expect. Her second complaint was over the fact that they had set up a crib for her. We managed to convince her that it would be okay to sit in the crib and have a tea party until they were able to get a big-girl bed. Later that afternoon, they were able to get an IV in with minimal tears. Big kudos to the IV tech, her nurses, and the child-life specialist.

Throughout it all, Lauren was pegging the "cuteness meter." She helped put on the cardiac leads, played tea party with all the doctors and nurses, and asked her nurse for lotion to smear on her nose.

Because she was in an ICU pod and not a private room, there was not room for me to stay with her overnight. Her nurses said that she hardly stirred all night. I guess trying that hard to look cute will wear a girl out. In fact, she thought the next day's dark, rainy weather made a perfect morning for sleeping in late. She didn't wake up until sometime after Tim and I finished our Starbucks.

It was a busy day for Tim and me; we had multiple meetings with the transplant team -- cardiologists, psychologist, social worker, child-life specialist, and more. Lauren's big excitement was a new PICC line. The cardiac anesthesia team came to transport her down to Interventional Radiology for it to be inserted. Lauren wanted no part of going anywhere in her bed. Thankfully, the anesthesiologists started a bit of the "happy juice" before we even started moving. She calmed down and was starting to wobble as they pushed her down the hall.

After the PICC placement, Lauren moved to a private room. I settled in for the first of many nights on the couch beside her. Thankfully, we both got quite a good night's sleep.

This morning, Lauren finally moved to a room on the cardiac step-down side. After a few days of life in an ICU pod (four beds to the room) and night in a room on the ICU side, we're happy to be in a regular room. She's still on continuous heart-monitoring, but the nurses don't have to do the other checks quite so often. It feels good to know that we can start settling in and working towards a schedule. Lauren was happy to walk over to the playroom for music therapy this morning, and she played with play dough for a while this afternoon. Unfortunately, she started to feel a bit puny and spent much of the afternoon hanging out on the couch in her room, napping and snuggling with Mom and Dad. We're hoping that it's just a puny day and not the start of a cold or something.

Perhaps the biggest news for today came during a meeting with one of the transplant cardiologists. She got a text page from the nurse coordinator saying that Lauren was officially listed for transplant. The waiting starts.

Pecan Paci's

2009-01-03T07:04:00.003-05:00

Over the past few years, I've tackled quite a few allergy-friendly baking challenges so that I could make food that is safe for Brennan who is allergic to milk, eggs, and peanuts. (Special thanks to all my friends at www.kidswithfoodallergies.org for teaching me all I needed to know about allergy-friendly cooking.) For this Christmas, he requested that I make pecan tassies for dessert.

Pecan tassies are mini-pecan pies, roughly the size of one big bite (i.e. Tim sized) or two regular sized bites. I used Oma's recipe for the crust, but subsituted soy cream cheese for the regular kind. For the filling, I have a recipe that uses honey and powdered sugar instead of the typical corn syrup and egg pecan pie filling. And, finally, Brennan's great-grandmother provides hand-shelled pecans from the tree in her backyard so that they aren't contaminated with peanuts.

I must say that they turned out quite well this year, and they were a perfect end to our *traditional* steak dinner on Christmas Day. Lauren was quite interested in feeding me my share of the tassies. In her cute two-year-old way, she renamed them "pecan paci's."

Later, the guys were trying to get her to say it correctly. They's say, "Tuh-tuh-tuh-tassies," and she'd respond, "Tuh-tuh-tuh-paci's."

I have a feeling that when this recipe gets passed along, it'll be labeled "Pecan Paci's."

I'm not a copycat

2009-01-02T08:52:00.002-05:00

I know there's several people that follow both my blog and Tim's. For the record, we typed our two versions of the day spent snow tubing completely independently of each other. He would hardly let me walk into the room when he was working on his.

I guess any similarities between the two are purely coincidence. Or, perhaps, it's proof that we aren't just joking when we say we share a brain.

One Awesome Christmas Gift

2009-01-01T19:28:00.006-05:00

We had a very wonderful Christmas this year. In addition to lots of wonderful gifts from relatives near and far, we received some money to spend as a family. In lieu of buying more "stuff", we decided to spend it on a fun outing that we could all enjoy. And so... early this morning, we headed north to go snow tubing for the day.

I could try to tell you just how much fun we all had, but I figure most people would rather see the smiles on my kids' faces.