Tuesday, January 20, 2009

Happy Birthday Big Girl!

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.

Sunday, January 18, 2009

Picture Update

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).


Friday, January 16, 2009

A "movie" day

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.

Wednesday, January 14, 2009

A very merry un-birthday

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!

Thursday, January 8, 2009

Settling In

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.

Saturday, January 3, 2009

Pecan Paci's

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."

Friday, January 2, 2009

I'm not a copycat

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.

Thursday, January 1, 2009

One Awesome Christmas Gift

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.


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