Lily's Story - The First Two Years

After an easy pregnancy and a long but routine delivery, Lillian Isabella Marie was born on 18 May 2010 at 0047. Her body failed to take over after her umbilical cord was clamped and my body could no longer provide for her. It took her five minutes to take her first spontaneous breath, in the doorway of our delivery room as the nurse was running her to the nursery, no less. These were the some of the longest five minutes of my life. The sheer joy of that little "eh" Lily cried, the most magical sound I have EVER heard, is not surpassed by much. This was our first clue that something might be wrong with our precious daughter... and that she was a fighter.

Most of the next several days of Lily's life are a complete blur to me. She was transferred to the NICU of a hospital two hours from our home where she spent the next 97 days. During her stay, we found a hole in her heart (very large VSD), central sleep apnea (her brain forgetting to breathe, treated in infants with caffeine), the infant version of chronic lung disease (BPD, the cause of her oxygen dependency), and the beginning steps to her eventual cerebral palsy diagnosis (serious muscle tone difficulties including problems with eating)... and a unique genetic anomaly she inherited from her mother that we otherwise no nothing about. While Lily was in the NICU, she fought hard with Mommy by her side and visits from Daddy as often as possible. She got to see big sister Lorelei three times with scheduled Child Life visits. Lily had her heart repaired at seven weeks old and her G-tube placed at twelve weeks old. After correcting an issue with her caffeine for the CSA and failing the newborn hearing screen, Lily was able to go home for the first time on 23 August 2010 at just over three months old.

During the next several months, Lily was readmitted to the hospital four times and had CPR performed at home six times (in six weeks). We also found out that the reason she failed her hearing screen is that our little girl, born hearing, had over the course of her treatment become completely deaf. The hearing loss was probably caused by medications she had to receive; the CPR was due to outgrowing her caffeine dose; the hospitalizations for catching colds including RSV in December 2010. Lily was admitted to PICU and spent eight weeks battling RSV followed by placement of a VP shunt to correct for the severe cause of hydrocephalus (excess brain fluid) they caught on a hunch as Lily masked all of the standard symptoms. During this admission, Lily was switched from caffeine to manage the sleep apnea to BiPAP, a specific form of ventilation causing her to need a face mask and a vent for sleeping. She was discharged 4 February 2011 and spent two months living in the Steven's Hope for Children apartments with our family. Those two months were some of the greatest times we've had as a family. We moved back to our home... and then brought Lily back two days later.

Lily had a cold that morphed into much more. She caught an incredibly rare yeast infection in her blood and seeded blood clots she'd managed to acquire in the hospital. This left her a very sick little girl for her first birthday. Nearly a month after her birthday, on 17 June 2011, our team sat me down to inform me that there was nothing more they could do for Lily. The medications they were using for the infection weren't getting through and she was rapidly deteriorating. It was obvious, and I already knew it... but on my way to that very same meeting, Lily was awake and smiling at me! We decided to fight for as long as she was still fighting and that if medicine was out of options, we were taking her home to enjoy her there. Plans were made to get Lily a trach so she could return home, which discussion of a more permanent line to give her the meds she needed.

That was Friday. Monday, after over six solid weeks of fighting... the infection was gone. Just gone. We figured it had been a miracle and ran with it. Six weeks from that date and we were home. We did our training, prepared our home, and gave Lily six weeks of the medication cocktail she'd been on at the time her infection cleared. 2 August 2011, Lily came home to be with her family.

Lily has been home ever since, even battling intense infections, with a single exception of a ten day stay for antibiotics last February. She's now celebrated the birthdays of her parents and big sister twice each, including a trip to Disneyland. She has been able to travel to see family and can even occasionally take a trip to somewhere fun in town. She's progressed enough to get some really neat equipment to help her, including a device that helps her stand and a pediatric wheelchair that supports her body while out and about. She still battles all of her medical battles with the same graceful joy for life. She makes progress and has setbacks and reminds Mommy that she'll do things in her own time and according to her own interests. And most importantly... she's still in the fight, my brave little girl who teaches me what life and love are all about.

With Friends Like These...

When I arrived at my favorite restaurant, a nice little family owned Vietnamese place where I haven't been in at least three months, the hostess Amy recognized me on sight. Before she could even tell me that they were out of my favorite order, she was asking about Lily and Lorelei. Amy is one of many people in my life who has fallen hopelessly in love with my daughters on our journey. She's never met Lily and I really hope that one day, she will have that opportunity.

We have many people in our lives who feel this way about our girls. It makes so much difference to our situation, coping with something so much bigger than ourselves. Our successes are shared among hundreds, and the sorrows we shared are felt in many hearts. While we may feel alone in the sense that Lily is unique, there are more people than I can keep track of who love Lily, pray for her, do good in her name... They follow her story. They learn new things, see life in a different way. Take the joy from each miracle and let it multiply. We might feel alone, but we aren't.

With friends like these, we never will be.

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.