Lily is alive because of her smile. Her beautiful, radiant smile, so full of joy and love in spite of the battles she's been through. That pure joy to my heart that she gave to me as I walked out of her PICU room to attend the meeting no parent ever wants to attend. That smile gave me the courage to tell her team, in the face of stark, cold facts, that yes, we would fight for Lily. Because Lily smiled. Lily was happy. She had been through some horrible battles in her (then) thirteen months, but she was still fighting. She was loved and she was happy. And while she fought, we would fight too.
The meeting was efficient, mostly a formality for the team to make sure that mom and dad were facing the reality of the situation. We made plans to try a few more things (while not being fully convinced the outcome would change) and plans to work toward getting Lily home because we wanted what time we had to be meaningful. I walked out of that meeting, kissed my baby girl, and then called the child life specialist to help me learn how to prepare Lorelei for what lay ahead.
17 June 2011 was easily the worst day of my life. But as bad as that day was... 20 June 2011 was one of the best. The infection we'd been fighting for over a month, seeded in blood clots Lily shouldn't have had... it was gone. And it stayed gone. Nothing really happened over the weekend that would have changed it. It was just a miracle and one of the best ones I've been privileged to experience at that.
Lily went home a mere six weeks later and has been home ever since with only one hiccup. She needed a short course of IV antibiotics and then was home again. She has thrived. Lily has met family and friends, made more people than I can count fall in love with her, and has played more with her sister than I could even count. Lily has learned a few signs and was recently caught signing "I love you" to Lorelei with the most adoring look in her eyes. And tomorrow... Lily reaches another milestone. Her second birthday. A day that eleven months ago seemed so impossible and yet, here she is.
A few more moments like this, and maybe, just maybe, I can exhale. In the meantime, Lily smiles at me and each day I'm reminded why this fight is so worth it. And tomorrow... we're going to party like it's her birthday.
Thursday, May 17, 2012
Wednesday, May 9, 2012
Lily's Birthday - Wish List
Lily also has a wish list of custom gifts. While she would love to have each item on this list, she realizes she shouldn't expect gifts and this list is just for ideas for those who might have wanted to get her something but didn't know what... especially since several of you have asked! We'll try to get pictures to go with every entry, but there are quite a few to start.
1. Video stories in ASL (if you do this, please tell Mommy which book it is so we can make sure we have it or get it for Lily!)
2. Custom trach ties
These can be ordered from http://trendytrachs.com in a size small, or they can be made. Please contact her mommy for details if interested.
3. Custom g-tube dressings
These can be ordered from http://patchworkpeddler.com or made. These are 2"-3" in diameter and the hole in the middle is minimal. Snaps are optional but very useful.
4. Large, long, and possibly frilly bibs
Lily wear bibs often to protect her skin from her drooling, but still loves to be fashionable and loves playing with textures. Her neck is 13" in circumference, which is larger than will fit most bibs that can be bought easily at the store so once again, the princess requires custom style. The following are some examples:
5. Wheelchair seat strap covers
Same as car seat strap covers, but for the wheelchair. The straps sometimes dig into Lily's skin. Should be pretty thin but are really easy to make in really fun prints. Like these, from Twigs and Tweets on Etsy.
6. Texture necklaces like this one.
Or like this one from Baby Birdie Boutique on Etsy. Lily loves to play with textures and colors and bigger, chunkier necklaces are great because she can pick them up again if she drops them.
7. Boppy pillow covers.
Lily still uses her Boppy pillow almost daily for positioning. She loves it! The one pictured is from Amazon.com, but these can be bought almost anywhere that sells baby things and can be made pretty easily by the sewing-inclined.
1. Video stories in ASL (if you do this, please tell Mommy which book it is so we can make sure we have it or get it for Lily!)
2. Custom trach ties
These can be ordered from http://trendytrachs.com in a size small, or they can be made. Please contact her mommy for details if interested.
3. Custom g-tube dressings
These can be ordered from http://patchworkpeddler.com or made. These are 2"-3" in diameter and the hole in the middle is minimal. Snaps are optional but very useful.
4. Large, long, and possibly frilly bibs
Lily wear bibs often to protect her skin from her drooling, but still loves to be fashionable and loves playing with textures. Her neck is 13" in circumference, which is larger than will fit most bibs that can be bought easily at the store so once again, the princess requires custom style. The following are some examples:
5. Wheelchair seat strap covers
Same as car seat strap covers, but for the wheelchair. The straps sometimes dig into Lily's skin. Should be pretty thin but are really easy to make in really fun prints. Like these, from Twigs and Tweets on Etsy.
6. Texture necklaces like this one.
7. Boppy pillow covers.
Lily still uses her Boppy pillow almost daily for positioning. She loves it! The one pictured is from Amazon.com, but these can be bought almost anywhere that sells baby things and can be made pretty easily by the sewing-inclined.
Thursday, May 3, 2012
Lily's Birthday - Inviting Avery
Some of you may have already heard about little miss Avery, of Avery's Bucket List. She is an amazing little girl with amazing parents who, about a month ago, were handed a major diagnosis of Spinal Muscular Atrophy, type 1. Instead of staying with the initial shock of something so major, they decided to aim high and really celebrate the rest of Avery's life by making her Bucket List and trying to cross off as many things as possible, including never letting SMA take Avery's smile away.
Sadly, Avery had the chance to cross that off on April 30th when she returned to heaven as a 5 month old little girl. One of her bucket list items was to go to a birthday party. Since Lily's virtual party is being celebrated everywhere, I'd like to specifically invite one Avery Lynn Canahuati to Lily's party on May 18th. She is invited celebrate with us with our many other angel friends in heaven. Lily says she doesn't even care if they wear orange.
With all that we've battled with Lily, fighters like little Avery and her parents inspire us. Our hearts go out to them at this time and we thank them most sincerely for sharing Avery with the world.
The Facebook link to Lily's virtual party is http://www.facebook.com/events/304850569590582/. Everyone who is interested is invited to attend.
Lily's Birthday - Awareness List
Because we expect that the list of things Lily would like to help raise awareness for will be quite long, I've created a blog post just for that.
Avery, of Avery's Bucket List - averycan.blogspot.com
Avery's favorite charities - sophiascure.org and fightsma.org
Avery, of Avery's Bucket List - averycan.blogspot.com
Avery's favorite charities - sophiascure.org and fightsma.org
Lily's Birthday - Good Karma List
One of Lily's wishes is to add good karma to the world in her name. Here's her list of ideas for how to do that. Some of them involve money, others just time.
1. Donate blood. Lily has received blood something like eight times. That means at least eight people who have saved her life without even knowing it. Infant open heart surgery requires two or three transfused units of blood even if the operation goes smoothly. Lily had hers at seven weeks. (And we would especially love to thank everyone who has donated to Lily, even though they'll never know she got it.)
P.S. For the friends in Lily's home town, the blood bank bus will be out at Toyota this week between 9:00 a.m. and 2:30 p.m. and at Kerr McGee on Wednesday, May 16th from 12:00 p.m. to 6:30 p.m.
2. Make an informed decision regarding organ donation... and act on it. Lily has many friends who are alive simply because of selfless acts by many grieving families. While we realize and respect that not everyone wishes to be an organ donor, we ask that everyone makes an informed decision. And if you chose to be a donor, sign up on an organ donation registry. For more information on organ donation, visit donatelife.net.
And thank you to everyone in Lily's life who has already made and acted on their decision.
3. Support awareness of any medical condition affecting children. Lily remains, for the most part, undiagnosed. But she has many friends who are diagnosed who want to get their stories out there. Help the world change for good, help keep the public aware of these conditions, and help create a world that welcomes children of all abilities and with any condition.
Miracle friends, if you have a link you'd like added to this, please let us know. It can be a site for awareness run by an organization or a family's blog detailing their journey with a medical miracle (and angels are welcome too). For personal blogs, we do ask that you have permission to share if the blog isn't yours.
4. Do a kind deed for another person. Whether it's helping someone out to their car at the store, making your husband's favorite dinner even though you don't like it, or letting your kids get away with something they would normally be in trouble for doing, just do something nice. Doing multiple nice things is a major plus.
5. Donate to something. Anything will work, whether it is a cause for Lily and her friends, the Ronald McDonald House coin collecting at McDonald's, the teenager trying to make it on a mission trip, or the person asking for change who can't afford to do something they need. Donate free of judgment to something and give a huge karma boost to the world by choosing humanity over money. It doesn't matter if it is a single penny or $500,000. Just consider it.
And, since time is money.... donating time as a volunteer would count for this too. Taking the time to deliver Meals on Wheels, clean up your community, fill a volunteer role at your local hospital, or even just taking a meal to a friend having a hard day shows so much compassion. Lily likes compassion.
6. Cherish your family and friends. Hold your children close. Call long distance family. Let the people you love know that you love them. Because tomorrow isn't a promise and today is a gift. Live in the moment and cherish it all.
1. Donate blood. Lily has received blood something like eight times. That means at least eight people who have saved her life without even knowing it. Infant open heart surgery requires two or three transfused units of blood even if the operation goes smoothly. Lily had hers at seven weeks. (And we would especially love to thank everyone who has donated to Lily, even though they'll never know she got it.)
P.S. For the friends in Lily's home town, the blood bank bus will be out at Toyota this week between 9:00 a.m. and 2:30 p.m. and at Kerr McGee on Wednesday, May 16th from 12:00 p.m. to 6:30 p.m.
2. Make an informed decision regarding organ donation... and act on it. Lily has many friends who are alive simply because of selfless acts by many grieving families. While we realize and respect that not everyone wishes to be an organ donor, we ask that everyone makes an informed decision. And if you chose to be a donor, sign up on an organ donation registry. For more information on organ donation, visit donatelife.net.
And thank you to everyone in Lily's life who has already made and acted on their decision.
3. Support awareness of any medical condition affecting children. Lily remains, for the most part, undiagnosed. But she has many friends who are diagnosed who want to get their stories out there. Help the world change for good, help keep the public aware of these conditions, and help create a world that welcomes children of all abilities and with any condition.
Miracle friends, if you have a link you'd like added to this, please let us know. It can be a site for awareness run by an organization or a family's blog detailing their journey with a medical miracle (and angels are welcome too). For personal blogs, we do ask that you have permission to share if the blog isn't yours.
4. Do a kind deed for another person. Whether it's helping someone out to their car at the store, making your husband's favorite dinner even though you don't like it, or letting your kids get away with something they would normally be in trouble for doing, just do something nice. Doing multiple nice things is a major plus.
5. Donate to something. Anything will work, whether it is a cause for Lily and her friends, the Ronald McDonald House coin collecting at McDonald's, the teenager trying to make it on a mission trip, or the person asking for change who can't afford to do something they need. Donate free of judgment to something and give a huge karma boost to the world by choosing humanity over money. It doesn't matter if it is a single penny or $500,000. Just consider it.
And, since time is money.... donating time as a volunteer would count for this too. Taking the time to deliver Meals on Wheels, clean up your community, fill a volunteer role at your local hospital, or even just taking a meal to a friend having a hard day shows so much compassion. Lily likes compassion.
6. Cherish your family and friends. Hold your children close. Call long distance family. Let the people you love know that you love them. Because tomorrow isn't a promise and today is a gift. Live in the moment and cherish it all.
Tuesday, May 1, 2012
Lily's Birthday - Party
Presents Lily would like you to please, please, please get her for her birthday:
1. A big virtual birthday party, full of people from all over the world celebrating Lily and all of her miracles over the past two years. Lily specifically requests that guests wear orange and encourages them to have mini-parties wherever they are. She also thinks that her birthday is a great reason to have cupcakes as a midnight snack (she was born just after midnight) or for breakfast and then go do something fun all day.
2. Pictures of her friends and loved ones in their orange, including any new friends. Group pictures are lovely, but Lily would specifically like shots of each person individually, submitted with their names as they'd like Lily to know them. Getting both is like getting a well decorated present and playing with the wrapping paper and ribbon... and still having a gift for later. These can be submitted to princesslilysmiracle via her gmail.com email account. (Please, no robots unless they are also wearing orange.)
3. Pictures of anything else. Really, anything. Everyday object and famous locations. Raspberries, couches, books, toys, toothbrushes, footballs... you name it. Lily loves to use her eyes to learn about the world and these pictures are incredibly helpful to her. If you really want to get creative, take pictures of the item in use, in context, out of context, up close, far away, etc. For example, a football could be photographed on a field, with a helmet and uniform jersey, with a baseball and a soccer ball, with a football player, as a closeup of the laces or skin, as a traditional football or a foam football, or with Aunt Dallas at Mommy's wedding. (Okay, we already have a picture of that last one.) You can send one picture or a hundred or none. Lily's only request is that your picture violates no copyrights.
4. The gift of sharing her language. Whether you learn to sign fluently or just learn how to sign "Happy Birthday!" or "I love you!", Lily asks that all of her guests who are able to do so learn to share her language. http://aslpro.com is a good resource for a quick sign, and Signing Time (signingtime.com) has a great series of videos for teaching sign to small children.
5. Prayers and good karma. Lily feels she can never have enough of either and loves both prayers and good acts done in her name. Below is a link to a list of ideas she encourages everyone to try.
The Good Karma List
1. A big virtual birthday party, full of people from all over the world celebrating Lily and all of her miracles over the past two years. Lily specifically requests that guests wear orange and encourages them to have mini-parties wherever they are. She also thinks that her birthday is a great reason to have cupcakes as a midnight snack (she was born just after midnight) or for breakfast and then go do something fun all day.
2. Pictures of her friends and loved ones in their orange, including any new friends. Group pictures are lovely, but Lily would specifically like shots of each person individually, submitted with their names as they'd like Lily to know them. Getting both is like getting a well decorated present and playing with the wrapping paper and ribbon... and still having a gift for later. These can be submitted to princesslilysmiracle via her gmail.com email account. (Please, no robots unless they are also wearing orange.)
3. Pictures of anything else. Really, anything. Everyday object and famous locations. Raspberries, couches, books, toys, toothbrushes, footballs... you name it. Lily loves to use her eyes to learn about the world and these pictures are incredibly helpful to her. If you really want to get creative, take pictures of the item in use, in context, out of context, up close, far away, etc. For example, a football could be photographed on a field, with a helmet and uniform jersey, with a baseball and a soccer ball, with a football player, as a closeup of the laces or skin, as a traditional football or a foam football, or with Aunt Dallas at Mommy's wedding. (Okay, we already have a picture of that last one.) You can send one picture or a hundred or none. Lily's only request is that your picture violates no copyrights.
4. The gift of sharing her language. Whether you learn to sign fluently or just learn how to sign "Happy Birthday!" or "I love you!", Lily asks that all of her guests who are able to do so learn to share her language. http://aslpro.com is a good resource for a quick sign, and Signing Time (signingtime.com) has a great series of videos for teaching sign to small children.
5. Prayers and good karma. Lily feels she can never have enough of either and loves both prayers and good acts done in her name. Below is a link to a list of ideas she encourages everyone to try.
The Good Karma List
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.
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.
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