Wednesday, February 22, 2012

Pieces of the Miracle Puzzle

Yesterday was a great day. We had a great nurse, Mommy was able to help change the dressing on Lily's PICC (short for peripherally inserted central catheter, basically a big deal IV), and lots of hospital friends came by to comment on how well she is doing and how big she is getting. Two very nice ladies from the Redlands 5th Ward (the local congregation of our LDS church) brought me food. Carissa brought the most delicious tuna melt sandwich I've ever had and a great selection of fruits. Shirley, who just received the news that her daughter can in fact hear, brought some great snacks to keep the munchies at bay while I'm at bedside.

After rounds for me and work for her my friend Nora took me out to Olive Garden. It's our favorite place to get together when Lily is in the hospital. We have a great dinner and run into one of my favorite people from the hospital cafeteria. Then we go to Kohl's to look for some ICU friendly clothes. I was pleasantly surprised to find that they did have one display full of button up shirts for little girls. We picked up the biggest we could find. Then I saw it.

The absolute perfect Easter dress for Lily.

With a big sister style for Lorelei. Just perfect for our upcoming family pictures. I was wanting to do something focusing on tulips as a reference to the essay "Welcome to Holland" by Emily Perl Kingsley. The dresses have slightly blurred tulips of the widely opening variety, with lots of dark green, orange, and purple... all the favorite colors in our family. And it even has yellow and white, which Lorelei will love because those are Nonni's favorite colors.

By this time, I'm beyond thrilled. I'm so excited in fact that I'm telling my cashier about Lily and her story, being in PICU, and the dresses. She feels so moved to help that she takes coupons that other shoppers have given up without using and gives me both $10 and 30% off. The total discount is so much that if I were to compare it to the price of the dresses at their sale value, I end up paying $1.39 for two gorgeous Easter dresses. They retail at nearly $100, and because of the love and inspiration of other people making sales at the right time and returning unused coupons... these gorgeous Easter dresses that mean so much to my family were basically free.

I cried. I'm even crying writing this. It is this type of goodness in the world, bringing meals to the mother of a hospitalized child, opening a home to allow someone access to showerandlaundry, passing along coupons at just the right time... that makes special needs parenting so much easier to bear, each a piece of the puzzle that together makes a miracle.

Tuesday, February 21, 2012

Fun in the PICU

This has been a very interesting week for Lily. She was admitted to the pediatric intensive care unit (PICU) last Wednesday with pneumonia. Not uncommon for a fragile little girl. Tests were done to verify that her brain shunt is working (it is), that her heart is functioning well (it is), and to see what infections she has. All the while, she's hanging out as the healthiest kid in the PICU, getting bounced room to room and nurse to nurse to meet the needs of the unit. They have some really, really sick kids right now, more so than normal. Lily, however, is being adored by the nurses and doctors with choruses of "She's so big!" and "Six months? You guys are doing great!"

The princess decided to pull a double all-nighter a few days ago, and has been sleeping it off for the last two days. During day one of the sleep fest, Lorelei and Daddy came to visit. We were able to let Lorelei cuddle Lily in the bed while Lily was awake. Lorelei was especially enthusiastic about that since it's one of her favorite things to do at home. Lorelei also left some beautiful artwork on the dry erase board in Lily's room. Her talents as an artist are definitely making themselves known and she is so proud of her work and what it means for Lily. Lorelei was also able to color the pillowcases for Lily's super soft positioning aids. These are called Z-Flo and they are amazing. After coloring with permanent marker and machine washing in hot water, they are pretty cute covers.

Mommy did leave quite a bit on Monday for time with Lorelei. For Mommy-Daughter Monday, we went to a place called Yogurtlicious that is very much like Yogurtland (where we went in Las Vegas). A nice little self-serve frozen yogurt shop. Lorelei really enjoyed choosing her own toppings, especially the edible water beads (aka strawberry boba) and the purple and blue gummy bears. We also took a few other outings in between waiting for the doctors to round.

Lily has been sleeping most of the time since Daddy and Lorelei's visit. Mommy hasn't had too much time to be lonely though. Between medical mama friends and new friends from the local LDS churches, I've been kept in good food with good access to laundry and showers. It also gives me that chance to get out of the hospital and take care of myself. Much needed at that.