DUARTE FAMILY

Mothers Day, 2011

2011-05-08T22:19:00.000-07:00

Dear Mom,

I missed you today. How I wish I could have spent the day with you. I miss our talks, I miss your laugh, I miss your touch.

I was so lucky to be your daughter. I could not have hand picked a better mom and I am so grateful for the life and the love you gave me.

I hope you can feel my love today. I hope you know how very much I love you.

Happy Heavenly Mothers day.

Forever your daughter,

Shelly

Dear Faith,

I missed you so much today. Your presence is missed every day, but days like today...make your absence felt even stronger.

I hope you, too, can feel my love. I hope you know how much I loved being your mommy.

I miss you. I will miss you always.

I love you my baby girl. Mommy loves you.

Feb. 26, 2011

2011-02-26T10:53:00.000-08:00

Dear Faith,

We have lots of snow at our house! Definitely enough to make snowmen and sled down the hill! We have been out of power but it came back on this morning. So glad it did because it was FREEZING!! I couldn't help but think how you would have reacted to all of this. Without power, you would not have been able to have your air purifier plugged in that created the white noise you loved to sleep to. I think you would have had to snuggle in bed with mom and dad. :) We actually had to do that with Melina because we were concerned with her getting too cold.

Speaking of Melina, she is doing wonderful. She will be 11 months old on Monday. She is getting so big and making some small attempts at crawling. She is starting to throw little fits and has a definite personality. I am beginning to think we may have our hands full with her!!!

We have our first Lacrosse game today for Dominic. I can't wait to see how his team will do. They have quite a bit of athletic talent on their team, however it is a small team....so we shall see. Lacrosse is my favorite sport to watch so I am excited! Tomorrow they have a double header in Redding. Do you remember when we went to Redding two years ago? I sure do. It was SO hot and I was very concerned about you. We went and sat in the back of our van to shade you from the sun. I remember having my feelings hurt because none of my friends kept us company. But now, looking back on it, I am grateful it was time for just you and I. You took a nap in the back and I just loved watching you sleep so peacefully. I sure wish we could go again together....

I took Dominic and Jessica to Disneyland a couple weeks ago. Again, a place that kept me constantly thinking of you. The three of us had a really good time. We got to go for 3 days and it was nice to spend quality time with Dom and Jess. The lines were short and we got to go on every ride we wanted. The longest line we stood in was to take a picture with Tinkerbell for Jocyleen. When we got up to Tink...she didn't even look like her! We waited 45 minutes for that!! But, it is a good picture that will give us memories to laugh at for years to come.

Grandma (mima) had a birthday yesterday. I didn't get to celebrate it how I wanted to since we were snowed in. However, I had candles lit and had a glass of wine in her honor. I hope you got to share her special day with her.

I miss you so much Faith. Whoever said that time heals....didn't know what they were talking about. It doesn't heal. It just provides you with the time to get a band-aid to cover up that wound....but the wound is still there. I think about you constantly and the realization that you are not physically with us is stronger now. I miss your laugh, your enthusiasm, your love.... I hope you are happy wherever you are and I hope you can feel all the love we continue to have for you.

Love,

Mom

7 years old

2011-01-17T09:06:00.001-08:00

Happy Birthday Faith. Hope the heavens are throwing you a beautiful party! We love and miss you so very much. Wish we could be with you.

What a Grieving Mother Really Thinks...poem

2011-01-16T09:32:00.000-08:00

Hello old friend,

Oh yes you know

I lost my child a while ago.

No, no please...don't look away

and change the subject

it's ok.

You see at first I couldn't feel

It took so long...but now it's real.

I hurt so much inside you see

I need to talk

Come sit with me?

You see,

I was numb for so very long

And people said,

"My she is so strong"

They did not know I couldn't feel

My broken heart made it all unreal.

but then one day, as I awoke

I clutched my chest,

Began to choke,

Such a scream,

Such a wail,

Broke from me....

My child!

The horror of reality.

But everyone has moved on, you see,

except for me.

Now when I need friends most of all,

Between us there now stands a wall.

My pain is more than they can bare,

When I mention my child

I see their blank stare.

"But I thought you were over it"

Their eyes seem to say -

No, no

I cannot listen to this, not today

So I smile and pretend...and say...

"Oh, I'm ok"

But inside I am crying

as I turn away.

And so my old friend,

I shall paint on that smile

As I have from the start.

You never knowing all the while

All I've said to you in my heart.

Author unknown

Missing you

2010-12-19T15:20:00.000-08:00

Missing you Faith.......missing you so very much. The brightness of the Holiday season just can't compare to the light you had within.

December, 2010

2010-12-05T08:51:00.000-08:00

Its been a long time! We have been so busy! However, it has been worth it. Football and cheer season went great! Andrew and Dominic's football teams both went to the Championships! Andrew's team won and are the Champions! Monty did an amazing job at running the snackbar and I really enjoyed this season as Cheer Coordinator.

But, no worries on not being busy...lol. Jessica is on a competition cheer squad now with her gymnastics center. She was asked to fill in for one of the girls and they wanted her to stay on! She has practice 3 days a week and usually one to two competitions a month. Lacey is on their special needs cheerleading squad so her team has performances as well! Andrew starts basketball next week and Dominic will start LaCrosse at the beginning of next year.

Melina is now 8 months old and is such a happy little girl. She receives therapy once a week through Infant Program. Developmentally she is at about 4 1/2 to 5 months old, so not too bad! Adoption should be complete in Jan or Feb.

I am still not that into the Holidays as it is hard without two key people in our lives, but I am trying to get myself in the mood. My cousin Nicole will be here with her daughter, Taylor, who is 21 months. So, with Taylor and Melina it should be fun and I keep trying to remind myself of that. It is always enjoyable to see the magic of the holidays through a child's eyes.

Monty and I recently went to UC Davis Children's hospital and were part of a panel speaking on grief and loss. At first, I didn't want to go. I was a mess initially and was not able to speak when it was my turn. Luckily, another mother spoke in my place and they were able to come back to me. By that time, I was able to pull it together and speak about our experience. I must say, it was one of the best things I have done. I came out of it feeling useful.....being able to use our experience for something good and productive. It also felt really good to share Faith will people who wanted to hear about her. I expected to come out of there feeling sad and exhausted. Instead, I came out on a natural high.....loving that I got to remember Faith and use that memory for a greater good. They asked if we would do it again and I hope they ask!

I am part of a network of parents that have angel children. It is a good place to share your feelings with people that understand. I have recently been told how much I have changed and have been reflecting on that. I guess I have and I guess it is to be expected. I am not really sure what I can do about it either. I think differently now. I don't like conflict. I am stronger in some ways, but so much weaker in others. I feel like people forget that I have been through life's worst pain. I know this is partly my fault because I don't show it. I don't like to be a burden on others and I definitely don't expect anyone to understand. I don't WANT them to understand because that would mean they would have to go through the worst of the worst....losing a child. So, this network has become a valuable part of my life to express and vent without judgment.

Anyway, through this Angel network, I came across this poem. It is a great one. So true and maybe gives a little insight and understanding. I thought I would share it.

My Mom's a Liar

Ask My Mom How She Is...

My Mom, she tells a lot of lies,
She never did before.
But from now until she dies,
She'll tell a whole lot more.

Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.

Ask my Mom how she is,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night ?

Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom,
just tell the truth,
Just say your heart is broken.

She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am Here in Heaven.
I cannot hug her from here.
If she lies to you don't listen,
Hug her and hold her near.

On the day we meet again,
We'll smile and I'll be bold.
I'll say, "You're lucky to get in here,
Mom, With all the lies you told!

Summer

2010-07-28T07:49:00.001-07:00

The craziness has begun! Football and Cheerleading season started this week. We are down on the field everyday from 4pm until 8pm. Andrew is on the Pee Wee football team and Dominic and Jessica are both Midgets this year. It will make the rest of the summer fly by! I am the Cheer Coordinator and Monty is in charge of the snack bar. With 7 children at the moment, including a baby, you can imagine how busy things will be! But, it is a good busy because we all enjoy it and have good friends involved in the program. Besides, it is always worth it for the kids!!!

Greg is still in Texas and apparently enjoying it. He has been working construction but is trying to finish up completing all his licensing this week to look for an EMT job. We miss him like crazy but are glad he is happy.

The baby is now 4 months old. She has good head control and is beginning to smile. I think she will be pretty high functioning since she is not too far behind developmentally so far. She is a beautiful, chubby baby that is VERY loved around here! She has a second mommy in Jessica, which is also nice for me! :) Things are looking positive for an adoption around November so we are trying to get all our paperwork in order. We can't wait to finalize!

Lacey turned 10 last week and Andrew turns 9 tomorrow. Jessica will be 12 next month. So, the ages at home are: 17, 13, 12, two 10 year olds, 9 and a 4 month old. (Greg is 19). It may sound like a lot, but they are really good, independant kids. I am a lucky mom!

Hope everyone is enjoying their summer!

"I don't know how you do it"

2010-07-13T04:33:00.000-07:00

I can't sleep because my mind is circling with the thought of how many times I have heard...."I don't know how you do it". I will be honest, I don't know how I do it either. I think that is why I am awake too early this morning trying to figure it out. I don't like the idea that people think I possibly didn't love my daughter as much as they love their kids which couldn't be farther from the truth!!! But, that is what comments like those make you feel like (and I know that is not the intent of them).

In fact, for those of you that know me and knew Faith and I together, we were obsessed with each other! Seriously. There are people in this life that I believe are destined to be together. Some people use the term soul mate. I have to agree with that term, although most people use it to describe their partner in life. I do not believe it has to be your partner. I believe it can be anyone: a parent, a friend, your partner, a child...

I am convinced Faith and I were meant to be together. She was absolutely a soul mate of mine: a person with whom you have an extremely deep connection that was put in your life for a reason. Our connection was the strongest I have ever felt in my life. I guess, in a way, that gives me comfort because it gives me a belief there is a higher power. It gives me the belief that there is something beyond what is here on Earth. It gives me the belief that things do happen for a reason and we have to have Faith in that eventhough it doesn't always make sense.

I have never been one to play the victim role. I think there is always someone out there that has it harder than I do. I do not feel like anything productive can come out of dwelling on the bad things that have happened to us and reliving it over and over. I will be honest that I did that for awhile. Then my counselor asked me if I like being in a painful moment over and over. Of course not! She then walked me through the fact that going back in those painful moments only hurts and does not change anything. If I could have changed something, I would have. If I could have changed places with Faith, I would have done it in a heartbeat. No questions asked. Any parent would. But, obviously I was not given that choice and here I am...

Life is all about choices. I choose to try to primarily think of the happy times with Faith and my mom. I choose to feel extremely lucky and grateful for the time I had... instead of dwelling on the time I don't have. I am choosing to continue to live because, really, what other choice do I have? I choose to try to give my other children a good life and be PRESENT for them. If I continued to allow myself to be "victim" of all the bad things that happened to me, not only would it hurt me, it would hurt them. They don't deserve that.

I will admit it is a struggle everyday, every hour. I have to do a lot of mental work and sometimes it is exhausting. But, I do it because I want Faith to be proud of me. I want Faith to know that I am living my life with love and courage in her honor because that is how she lived. I know she would want me to be good to myself, her father and to her brothers and sisters. I want to hopefully help someone else through my experience. I want to do the best I can so that when I do see her again, she will say "you did good mommy".

:(

2010-06-25T07:04:00.000-07:00

Somedays are just SO hard.......

Summer

2010-06-07T07:45:00.000-07:00

Finally the weather seems to have given us the sunshine we have been waiting for! Summer has arrived and most of my kids are out of school or will be by the end of this week. I am ready for sleeping in a bit and enjoying our pool with family and friends.

Speaking of schools, I have finally made my mind up about what school my kids will go to next year. I am relieved to have made a choice because I have been struggling with this decision for a long time. So, now, all of my kids will go to the Charter school near us and they are very excited. Dominic and Jessica have already been going and love it. Hopefully, Lacey and Andrew will too!

My new little one is doing GREAT. She is such a joy and is a really good baby. She has been sleeping through the night for about a month now and is starting to smile and coo. She is 2 1/2 months old. The other kids adore her and since they are older, are a big help to me. She is definitely going to be one spoiled little girl! :)

My oldest, Greg, moved to Texas. His best friend (since 2nd grade) lives there and he decided to join him. He can complete more schooling in Texas for a lot less than in California. I miss him and it is strange to think he is so far away. However, while he is young and does not have the responsibility of a wife or kids he might as well have new experiences. He just better come back once he gets that wife and kids!!!! lol.

Football/cheer season is approaching and we are starting to get busy with that. I am the cheer coordinator and have been pouring through catalogs trying to pick our uniforms for this year. That is the best part of the job! Monty will be running the snack bar at our home games, so very soon our Saturdays will be extremely busy. I need to buy a baby carrier so I can do my job with baby in tow! Wish me luck.

Enjoy the sunshine.

Shelly

Wings

2010-06-02T07:56:00.000-07:00

I have officially survived all my firsts since Faith passed away. Yesterday, June 1st, was the day Faith earned her wings. Needless to say, it was an emotional day. It was challenging trying to keep my mind from putting myself back in that horrible moment one year ago. I only want to remember the happy times with her, the laughter, the kisses, the music, the love......

Mothers Day, 2010

2010-05-09T21:30:00.000-07:00

I have wonderful children! I am extremely grateful for the children that I have and how special they make me feel. They allowed me to sleep in and continued to ask me throughout the day if I needed anything. They are such loving, selfless human beings who truly want people to be happy without anything in return. That is a quality that is hard to come by now-a-days. I love them so much!!

However, this was my first without Faith. No mother to spoil and no Faith to help brighten my day. A strange mix of happiness for the ones I have and sadness for the ones I have lost. It is hard to fully articulate the emotions of the day. But, I did my best to keep them inside and keep smiling for the rest of my family.

It is almost a year and I will have overcome all my firsts.

Miss you still.........always

2010-04-30T18:06:00.000-07:00

Even though I have this new, amazing addition to our family.....I still miss Faith just as strongly(maybe even more so, if that is actually possible). Faith loved babies and I can hear her voice, filled with excitement, about our new one. She would have been such a sweet big sister. Even during her final days, when she would hear a baby cry in the hospital, her brow would crease in concern. I would have to whisper in her ear that the baby was ok and stroke her brow to calm her down. That was the beautiful spirit of my Faith. She had her own concerns, but still was able to feel beyond herself into the anguish of another.

We are almost to our year mark and I am flooded with memories. My main thing right now, though, is wishing I could hold her. Maybe it is getting to hold this new one that conjures up those thoughts. I am not sure. But, I still remember what it was like to hold her. I can still bring up those memories of how she felt and how she smelled and I sure hope that never goes away!

Dominic, Jessica and Andrew are at a children's grief camp this weekend. It is specifically for children that have experienced a significant loss. It sounds like they have a great program of mixing fun with sharing memories and I hope they enjoy it. I hope they will benefit from this experience.

Sending love your way my Faith. Mommy loves you.

Exciting News!

2010-04-19T17:11:00.000-07:00

I am happy to report that we have a new addition to the Duarte Family! At this point, she is a foster placement, but we are hoping it will become an adoptive placement. So far, things are looking positive...but, of course, we have to be careful getting too excited (although obviously hard to do).

Due to the fact that she is a foster placement, unfortunately I cannot give out too much information at this time or post any photo's. I will tell you that she is beautiful and is 3 weeks old. She has some cardiac issues, just as Faith did, but luckily not as serious.

We feel extremely fortunate to have this child in our home and are falling more in love everyday. The events that led her to arrival with us are very "strange" and "coincidental" and I am positive some individuals from up above helped make it happen. :) I can't wait to have confidentiality lifted so I can share it all. Hopefully, we won't have to wait too long for that to happen.

"Keep Faith" things are meant to be for this amazing little girl to continue to stay with us.

The beginning

2010-04-01T09:22:00.001-07:00

This week marks the date (March 30th) when our hell began one year ago.

Judgement

2010-02-24T17:15:00.000-08:00

So tomorrow I have my licensing person coming out for inspection to reinstate my foster care license. I don't even understand why it was put on hold in the first place, but I have finally felt like opening back up and seeing what comes my way. I am very nervous about tomorrow because there is so much judgement involved. They come in and judge the way your home looks and have the right to judge you as a person when they don't really know you. Luckily, this is the person I have had for the past 10 years, but it is still frightening to think someone has your future in their hands.

I have met some resistance to my wanting to take children before a year from Faith's passing. It is strange to me to think that they truly think people will magically be "better"after a year..whatever "better" is. It will be nine months since Faith passed away next week and to be perfectly honest, some things are harder. Like I have said before, in ways it becomes a bit easier with time because you realize you have to accept that you will be living with this pain; but..yes, some things are harder to deal with! I feel her absence more now. I feel more lonely not having my special sidekick. Basically I FEEL what life is like without her instead of that nice sense of shock that carries you through initially.

I do understand the year in a way. You need time to let that shock wear off. You need time to know what you are actually feeling and you need time to learn to cope. However, grief is life long. It will never go away and it will be a continued process of dealing with the hole left in your heart. A continuing process of healing that will be with you until the day you die. But, in my opinion, it is up to the person and family to know when they feel ready or not to start "living" again. Everyone grieves differently. Differently or not, it doesn't change the fact that it is forever. We all learn to ACCEPT at different times and you can not tell someone when that will be. There is no right or wrong answer. No timeline will help guide you to that place. It could be a month, 6 months, 10 months, 10 years, 20 years, never. It is all an individual process. Period. No judgement should be allowed for a very personal experience. It goes back to the age old saying, "don't judge someone without walking in their shoes".

Some people have said maybe the year is to ensure you don't try to replace Faith. How is it humanly possible to replace someone???? It absolutely is not. I would NEVER try to replace her. Faith was one of a kind, as are we all. Faith was my soul mate (no I don't believe it has to be your husband :) ). Faith and I had this bond that I don't know if I will ever share with another in this lifetime. I am grateful for that experience. Grateful for the time I had with her and to have that unique connection. So there is no way I would ever try to "replace" her. It is not possible.

The way I see it, though, is that I am still here for some reason. I still have love to give and a home to share. My kids and my husband have been ready to share it for some time now. They have been waiting for me to be ready. I finally feel up to exploring the possibilities of that with someone who needs it. I will try to be careful and smart about who we accept into our lives. My priorities have changed. I used to be this person that had to be super busy ALL the time. I thrived on it. Through the loss of Faith, and being forced to slow down and I have learned the value of that. I no longer want to be that busy. I want to make sure I have adequate time to dedicate to everyone.

With that being said, I still have my A type personality that likes to have a lot to do, likes to be organized and likes a large family to run. The difference I have now, the things I have learned over the past 9 months, is not to be SO busy or SO overwhelmed that you miss the small things. You miss pillow talk with your daughter or throwing the ball with your son. That will hopefully carry over and help us in making a good match for our family.

I am not in a hurry. I want what is meant to be for us. I firmly believe that God will make that happen. If there is someone meant to be with us nothing will be able to get in the way of that. I also believe that my mom and Faith will be working their magic to make it work out as well. Hopefully showing me the signs that allow me to know the path I am to take. :)

So, we shall see. In the meantime wish us luck tomorrow. I will let you know how it goes.

Hawaii

2010-01-28T08:47:00.001-08:00

We had a fabulous time in Hawaii!!!! We went whale watching, went on a submarine, attended a luau and, of course, spent lots of time swimming. The weather was a perfect temp. of 80....how do you beat that? We really did not want to come home!

It was hard holding it together on the plane ride home because home is reality and who wants that???? Home is a reminder of what isn't here and I didn't want to come back to that. However, as hard as it is...I know I can't deny reality and have to face it.

This week has been a big week for me. I have been shown that I have made progress even though it doesn't feel like it. Here is how:

A couple of months ago I was asked by a friend of mine if I would be interested in taking a two year old little girl that might go up for adoption. The child's circumstances made it so that she would need to move homes in Jan. or Feb, which was perfect for me because it would be after my trip to Hawaii. So, this friend of mine was going to call me once the social worker knew when they were going to move the child. Anyway, what ended up happening was this friend decided to take the little girl into her home instead. I know that sounds messed up to some.....it is what it is.....but the thing that I am happy to report is that I am actually sad that it didn't work out! I know it sounds crazy to say that you are happy to be sad, but it is major progress for me!!!

Up until this week, I didn't care about having any other children in my home. I had no interest. I had been asked about other children and I had no desire to take them in. I have been simply existing in this fog like world and have not felt like opening my heart or my home. The situation with me not getting this little girl...me being disappointed that it didn't work out...shows me that I am ready again. That is huge progress! I actually might be ready to open myself up again! I feel ready to give someone a good home and the love they deserve. I might not have realized that without this situation occuring.

I have to believe that everything happens for a reason. I guess I was not meant to be this girl's mommy and the right kiddo will be brought to me eventually. If I look back on the choices I made prior to getting Faith, it just solidifies that those choices happened for a reason. Those choices happened to allow me to take Faith into my home. It was absolutely meant to be. We were meant to be together. And even with this awful pain I live with, I would do it all over again. I am glad those choices occured so that I could have Faith. 100%.

So, now knowing I am ready to open my heart and home I will patiently wait for fate to do its work. I had forgotten how much I LOVE to give kids a home. I had forgotten how much I LOVE to take care of them. I am happy this love has returned to me. Progress!!!!! :)

HAPPY BIRTHDAY!

2010-01-17T08:31:00.000-08:00

Happy Birthday Faithy! Look for our balloons. WE LOVE YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

New Years, 2010

2009-12-31T13:40:00.000-08:00

A new year. Wow. I must admit that I have mixed feelings about it. On one hand, this year was horrible and I am ready to move on from it. On the other hand, it was the last year with my daughter and it is hard for me to separate from it.

January marks seven months without my Faith. I miss her everyday. I miss her crooked smile, her laugh, her voice, her smell....it hasn't gotten any easier. However, I will say that the anger and guilt are starting to lesson and the dark cloud that has been over my head is starting to rise. I am starting to want to put myself out there: volunteer at the hospital, volunteer at the kid's school, help other grieving families, adopt again, possibly go back to school myself. I have to believe there was a purpose for all of this and it is leading me somewhere. With the black cloud that has been following me around, I have been incapable of any sense of direction. With it lifting, perhaps I will see the path I am to follow. That is my hope for 2010.

We are starting our new year off right by heading to Hawaii! We will be leaving on what would have been Faith's sixth birthday, January 17th. We will release our yellow balloons to her on one of Maui's beautiful beaches. It will be special, just like her.

Hawaii will be the start of a year of continued healing and renewed hope in life. It will be a year of strengthening my relationship with myself, my husband, my extended family and the children that are here.

I know Faith wants us to be happy. I know she would want us to be strong and work on loving each other. Just like in my previous post, we need to live in honor of her name:

F = Family. Always put family first.

A = Acceptance. Accept what you have been given in life. Just like the Serenity prayer;
Accept the things you cannot change, courage to change the things you can and wisdom to know the difference. I have to accept that Faith and my mom are not here. I can't change that or other things in life that are beyond my control. However, I can change my reaction to them. I do have control over that.
Also, accept people for who they are. You cannot change people. Again, all you can do is have control over your reactions to them.
So, Accept that we are all flawed. Everyone has shortcomings and allow for some mistakes. Once you accept people "as is", it makes things so much easier. No expectations.

I = Integrity. Live your life with integrity. Stand up for what you believe in, even if difficult. Be responsible for your own actions and for your own character. Make your own choices. Do what you believe is right for you and your loved ones.

T = Trust. You HAVE to trust yourself and the ones you love. Live your life in a way that allows others to trust you completely. Trust is a key component to any relationship.

H = Happiness. Faith had happiness through all adversity. She was a true example of how to live life and love life! With her example, we need to make ourselves happy and do our best to make other's happy. Being happy is the best way to honor Faith.

Faith was the best thing to ever happen to me. I want to finish my time here living my life in this way, in honor of her name and what she represented. I will try my best to make her proud. I will try until my time on Earth is over and I get to see my baby again!

Shelly

The Holidays

2009-12-17T21:09:00.001-08:00

Note to self: Do NOT go to a Candle Lighting Ceremony again! Since the ceremony, it has felt like we are right back to day after Faith left us.

Why are the Holidays so challenging people have asked? Why isn't it like any other day?

Well....here is the way I see it so far:

Of course, everyday is extremely challenging. Grief is all consuming, especially when it comes to grieving for your child. Not a day, not an hour goes by without that child coming into your thoughts. I have learned that this pain is never going to go away. I accept that. Now, it is trying to figure out a way for me to learn to live with this pain. I need to learn how to have the pain inside and still live each day to my fullest capabilities. I will never be the same person or have the life I used to have. That chapter is closed and I have to rewrite my story. It is up to me to start filling those pages. That is difficult to do when the pain is so intense. It is exhausting to put on this "front" of happiness. But that is exactly what the Holidays force you to do and why it is harder than any other day.

Holidays are supposed to be about giving, family and love. But the bottom line is that they are stressful. You have to shop, decorate, cook, etc. Your children expect certain things at this time of year and you have to make sure you do your best to provide that for them. So, during the Holidays you have to combine that stress with your grief. It is exhausting. But, you can't spend the day in bed because you have things to accomplish. You have to continue so you can make things nice for your family. Basically, you have to set your feelings aside and keep going.

I had a panic attack while Christmas shopping. I was unprepared for the overwhelming sense of sadness at seeing so many things that would remind me of Faith. I am putting all these things in my shopping cart to buy for my other children and I want so badly to put something in the cart for Faith. That is the difference between a Holiday and a "normal" day. On a normal day, I could just walk away from all of it. On a Holiday, I HAVE to face it.

During the Holidays you get beautiful cards from others. Normally, you are so happy to receive them. But, while you are grieving it is hard to look at these perfect looking families, where everyone is present, and not think of the Christmas card you did not send out because you would have someone missing in your picture. You can't send out those cheery letters, where your life sounds so perfect, because what could you possibly say?

So, those are some of the things that do make this time of year harder than a regular day. The Candle Lighting Ceremony was a set-back. I will not do it again. It re-opened all the wounds and brought our family back to those final moments. I was just starting to get those out of my mind and return to the happy memories. Watching my husband and children cry like they did when we were at the hospital was absolutely horrifying and I felt awful for putting them through that. I didn't know.

We honor Faith everyday in our house. We light a candle for her and our other loved ones that have passed, nightly. Christmas will be no exception. We will think of Faith, celebrate her and celebrate that we still have each other.

The new year is approaching. With the new year comes the fact that we still will continue to learn to live with this pain. We have a long way to go. However, with the New Year we will work on how to fill the new Chapter in our lives. We will work on filling those pages in Honor of Faith and what she stood for:

F = Family
A = Acceptance
I = Integrity
T= Trust
H= Happiness.

Christmas 2009

2009-12-14T11:21:00.000-08:00

Our first Christmas without Faith. Needless to say, it is hard not to be emotional. Everyday is challenging, however a Holiday is intended to recognize love and family. Because of that, it is a reminder that an extremely important member of our family is missing. It is hard to get into the spirit of Christmas. I have 7 boxes of Christmas decorations and I probably put out an equivelent of 1 box. But, my decorations are lovely because they are ones that are in memory of my mom and Faith. My mom loved poinsettia's so I have lots of those around and any decoration with the word Faith is scattered throughout the room. I also bought a tree that is Faith's height and primarily decorated it in gold. I found a beautiful yellow butterfly ornament that definitely makes it a "Faith tree". An angel that lights up in multiple colors sits at the top. So, I was able to find a way to recognize Christmas and incorporate the ones not here in physical form in a way that can actually make me smile.

We went to a Candle Lighting Ceremony through Compassionate Friends that will now be included as one of our Christmas traditions. It was a ceremony that was equally as beautiful as it was sad and it was nice to be with others that truly understand. It was such a special way to honor Faith and the rest of the child angels. I am hoping by formally honoring my Faith, it will give me some solace and because of that allow me to concentrate on making the rest of the season special for my other children.

At this Candle Lighting ceremony (that is done worldwide) to remember the children that left us to0 soon a man named Alan Pedersen sang this amazing song. Alan is a bereaved parent, also, who lost his daughter. Here are the lyrics to this special song:

Tonight I hold this candle
In memory of you
Hoping someway, somehow
My love will shine through
I close my eyes
Lost in the glow
There are so many things
I want you to know

This candle says I love you
This candle says I miss you
This candle is saying
I remember you
When I'm holding it toward heaven
It feels like you are near
If you're looking down tonight
And see this candle burning bright
It says I'm wishing you were here

In the glow of this candle
I can almost see you smile
And it carries me away
For a little while
To another time
Another place
When all it took to light up my world
Was your beautiful face

This candle says I love you
This candle says I miss you
This candle is saying
I remember you
When I'm holding it toward heaven
It feels like you are near
If you're looking down tonight
And see this candle burning bright
It says I'm wishing you were here

Someday, some way
I'll see you again
I'll hold you
In my heart
Until then....

I bought all of Alan's CD's and this is my personal favorite:

We got to know the magic of their smiles, if only for awhile.
Wasn't it beautiful?
They taught us how to love so deep, feel so complete.
Wasn't it wonderful?

Even if we knew that it would end,
If we had the chance we'd do it all again.
Lets Celebrate the Children. Celebrate our kids.
Celebrate the Children and remember that they lived.

(Chorus)
They are our Strength.
They are our Heroes.
They're our Angels now.
Let sorrow wait, lets celebrate.

They left so many gifts behind for each of us to find.
It's magical.
They're with us everyday, give help along the way.
It's Spiritual.

They're part of everything we say and do.
We're better people now because of them, it's true.
Celebrate the Children and send them our love.
Celebrate the Children looking down from up above.

(Chorus)

So fly butterfly. So long sweet balloon.
Float up through the clouds, somewhere beyond the moon.
Let them know we'll see them soon.

Celebrate the Children. Celebrate our kids.
Celebrate teh Children and remember that they lived.

(Chorus)

Celebrate the Children. Send them all our love.
Celebrate the Children they're looking down from up above.

(Chorus)

Oh Celebrate, Celebrate.
We got to know the magic of their smiles, if only for awhile.
Wasn't it Beautiful?

Enjoy the Holidays. Give lots of love to your family and give thanks for all that you have.

Shelly

No Greater Pain

2009-09-21T08:19:00.000-07:00

No Greater Pain

I know you mean well
But you don't understand
There are no words to explain
Although on the surface, I may appear fine,
Remember I buried a child of mine
And there is no greater pain.

Grief is a taboo in our civilized world,
I despise this hideous game,
I must smile while going insane.
For Gods' sake, a part of me died,
You can't imagine how often I've cried,
And there is no greater pain.

If I look well,
Or laugh when you joke,
You think I'm my old self again.
I'm raw inside, a shell of me,
The woman you knew can no longer be,
And there is no greater pain.

Look deep into my eyes,
Acknowledge my loss,
As my heart beats its hollow refrain.
I'm caught in a web of infinite whys
I'll morn for my son 'till the rest of me dies,
And there is no greater pain.

Madelaine Perri Kasden
Written in loving memory of her son,
Neill Perri 10/2/71-6/15/95

Goodbye

2009-09-02T09:34:00.000-07:00

Thank you to everyone that has offered support before, during and after the passing of my beautiful daughter, Faith. She was an inspiration to many and a source of light for our family that is beyond compare.

I needed this blog during the many stages of emotions I went through over the past 6 months. It was a valuable tool for me and a very helpful way to unload the emotions I was feeling during this horrific time. However, I now realize I should keep my feelings private and am developing another way to share them that will continue to be beneficial for myself and my children in the years to come.

Our family is moving on in the best way we can. Each day brings new emotions and sometimes...you just can't fight them. "It is what it is". Grief is horrible and can bring you to your knees; sometimes when you least expect it.

But, our family is strong and we will continue to move forward. Some days we cry, some days we smile, some days we even laugh.....most days we do all 3! We do so with Faith's love in our mind and in our heart. We do so in honor of our precious angel looking down on us and wanting us to find peace and happiness once again.

Thank you to all who followed Faith's story. Our family really appreciates the outpouring of support we received and we will never forget it. We hope Faith made an impact on your life as she did so greatly in ours.

With love.......The Duarte's

Septmeber 1, 2009

2009-09-01T10:26:00.001-07:00

I would like to clear something up: dwelling on past events and grieving are two separate things. Yes, you should not dwell on past events in your life that do not allow you to productively move forward. However, losing a loved one and wanting them to be remembered is not dwelling on a past event. I believe any grief counselor would back me up on the fact that it is good to talk about our loved ones that have passed on. It is good to laugh, cry, be angry....You need to allow yourself those feelings in order to heal. Stuffing them away (not dwelling on them) would be the most harmful thing you could do. It is natural to have a gromet of emotions and healthy to share them.

For me to share my feelings, even ones of feeling alone, is only expression. Anyone that knows me well, would say that I am not one for self-pity. In no way am I asking for that with this blog. There are many stages of grief...all that one needs to go through during their journey of losing a loved one. To me, this blog is an amazing way to express myself and the feelings I have experienced along the way. Right or wrong, they are my feelings. Right or wrong, I feel it is valuable to share them as a tool to for others to learn what those of us that have lost a child go through.

I want to say how nice it was to receive that beautiful post from Pam. And, what strange timing it was!!! In my last post, I stated how I did not think I wanted to continue with foster care because of the extra attention my children were receiving without doing it. Strangely, since that post, my kids have been asking me when we are going to get a new child. I am shocked! However, they have grown up with this lifestyle so they don't know any other way. I mentioned working with a four year old girl the other day and Dominic and Jessica got very excited thinking the four year old was coming to live with us! I talked to them and they really want a young child back in the house again. Hmmmmmmm..................................

We had a really nice weekend. Hot, but nice. All four of our football teams won their games!!! My cheerleaders did really well for their first game and I am so proud of them. Monty and I got to enjoy adult time Saturday night, as well. We went to a tailgate party with friends where we had a few drinks and enjoyed some dancing. We have not done anything like that in awhile and it was fun.

Jessica got to have her birthday party with friends at SkyHigh on Sunday, which is a fantastic place for kids to go. We had never been before, but I will say it was worth the money! The kids had a blast and got a lot of energy out so we could enjoy a quiet, leisurely Sunday evening.

Till next time.............

Shelly

August 26.2009

2009-08-26T09:04:00.000-07:00

It has been a challenging week and a half. Faith would have started Kindergarten this year. The first day of school was one of the hardest, saddest days that I have had to date. Faith couldn't wait to go to the same school as her brothers and sisters and it killed me that she didn't get to do that. She would have lit up that school and it breaks my heart everyday to see all those kids and know that they are missing out on getting to know such an amazing person.

That is another challenge....people forgetting. That is the hardest part of this whole process. A friend of mine told me that the support goes away extremely quickly and that people forget equally as quickly. I didn't believe it, but now I 100% understand and it hurts. Hurts more than words can even express. I did not feel this way with my mom. I suppose it is because she was an adult and I know that the people that knew and loved her will remember. However, with Faith, she was so young and only a select number of people had contact with her. So it is easy for her to be forgotten. As a mother, that is the hardest thing to accept. My beautiful, courageous baby doesn't deserve that.

When she was alive, there were multiple support avenues. The heart support group was phenominal, especially during hospital stays, but now they are basically null and void. Maybe it is due to the fear of the same thing happening to them. Family members and friends (not all, of course) that called daily, now call few and far between and some not at all; This blog used to get up to 25 posts in a day and now, it is lucky to receive one. It is all so strange. Strange, lonely and sad. I am going to go to a support group once football and cheer free up my time. The only unfortunate thing is that is that the closest one is pretty far into Sacramento. But, I will try it out since they only meet once a month and I am sure it will feel good to share with others that understand.

I guess I feel free, however, to express these things on the blog because of that. I told my kids that this blog will be a great thing for them to look back on one day. When they are 50 years old they can go to this site and see how their mom was feeling....remember Faith...see what things they did....what vacations we took...etc. After I pass away, it will be even more valuable to them. I wish I had a chronicle of my mom's life or a letter that she wrote to me...anything. The world of technology sure has made a lot of great things available.

Since the kids are back in school, it is very strange to be at home by myself. I'm not sure I care for it and am considering going back to work. I am fairly confident that I do not want to do foster care anymore. There are a few reasons for this.... 1) I don't want to have anymore losses, 2) working with biological parents is difficult and 3) because, honestly, the other kids are blossoming with the extra attention. My kids have openly and lovingly shared their mom and dad with multiple children for the past 8 years, many of them (primarily Faith) very time consuming. It is their time now! They have suffered enough loss, as well. They deserve extra attention and I don't want to weaken and take that away from them. Dominic is 12 now and Jessica just turned 11. I don't have much longer until they are adults and will move away from home and that is why I need to stay focused on them and continue to be strong and say NO when I receive those calls!

Other than that, life continues to move forward and I keep fighting to find my way.

Shelly

August 24, 2009

2009-08-23T13:21:00.000-07:00

HAPPY BIRTHDAY JESSICA!!!!!!!!!!!!!!! i LOVE YOU!!!!!!!!!!!!!!!!!!!!!!!!!

August 11, 2009

2009-08-11T10:42:00.000-07:00

We went on another family trip this past weekend. This time was a bit easier even though we went to Faith's favorite place....San Francisco! Faith had numerous medical appointments in San Francisco and we would always make it an overnight thing so we could take our time. She loved to go to the Pier and watch the seals, which she called aarh, aarh's. Everytime we went through a tunnel, we had to yell "Yipee!". So, it is a place that holds a lot of memories.

However, we did really well! I am proud of all of us!!! Our first day in San Fran, we went to Alcatraz. The kids seemed bored with the exception of Andrew who was nervous. If you know Andrew...you will understand. :) The kids loved the boat ride, but Alcatraz itself was boring to them. When the tour was complete, we went to the Pier and watched the Aarh, aarh's and thought about Faith. We ate at our favorite restraunt afterwards, Bubba Gumps, and had a really nice surprise...we had a view of the ocean and 3 dolphins were jumping right in our view!!! A present from my mom and Faith?????

The following day went through the tour of Winchester Mystery House. Everyone LOVED that!!! Dominic was really interested and asked really good questions to the tour guide. (most of the questions were better than questions other adults were asking, I might add). After that, we had a late lunch that served as dinner and were on our way home. It was a quick, nice get-a-way.

This next weekend is our last open weekend before football games. I think we will spend it at home, relaxing around the pool and BBQing! Football season is long and because I am the Cheer Coordinator, even longer. I will need to be there from 10am all the way until the last game ends around 7 or 8. LONG DAY!!! But, football season is fun and I am glad we have the distraction. There are great people involved in the organization and it has been fun getting to know them.

The previous football season's, Monty was the one involved and I would stay at home with Faith and Karen. I think most people barely even knew who I was! So, this is bittersweet: fun to finally make friends, but at the same time...knowing why I can finally make them. However, I am trying to learn to embrace my NEW normal as challenging as that is. What else do you do? I know I am setting an example for my children of how to face life's curveballs and I take that seriously. It is a lot easier to curl up in a ball and shut the world out than to draw from your inner strength and rise to the occasion. My kids are rising to this challenge in an incredibly beautiful way. I actually draw courage from them. As much as I want to be with Faith, I also know I need to carry out my mission of being the mother to these AMAZING kids who show me the meaning of inner beauty and strength everyday!!!!!

AUGUST 1ST

2009-08-01T08:58:00.000-07:00

It has now been 2 months without Faith. We are still finding our way and living each day as it comes. 3 of my kids: Dominic, Jessica and Andrew are involved with football and cheer which started last week and keeps us VERY busy. It is 5 days a week for the next few weeks so there will not be time for much else.

I went to my doctor the other day and he said something very interesting to me...that I am not only grieving, but also coming off a heightened sense of anxiety that I lived with on a day to day basis. I had never even thought about the day to day anxiety! He asked what it was like when Faith didn't wake up at her normal time, or when she would look the slightest bit "off", or would get a low grade fever, etc. When those things happened, I was worried sick! Faith had numerous medical problems and we spent a lot of time at unplanned doctors appointments, ER visits and hospital stays. So, it REALLY struck a chord with me and gave me some new enlightenment to some of my feelings!!! It makes so much sense, but yet was not even something I had considered!

Reno was a nice trip, although it was our first one without Faith. When I packed, I couldn't shake the sense that I was forgetting something. I am so used to almost packing the whole house for trips and it was extremely strange to only fill up half of our trunk. In Reno, I couldn't stop myself from thinking "Faith would do this" or "Faith would have liked this". She just brought so much happiness and excitement to everything, that is was extremely strange not having her there. However, she was there (in a way). Jessica got her face painted with a yellow butterfly so Faith could be at Circus Circus with us and I went into a shop and found what I feel is a mommy and Faith ring. The ring has a yellow butterfly along with a clear butterfly. It makes me feel like it is Faith and I: Faith is yellow and I don't have a color yet for I am still here on Earth. Whatever makes me feel better, right? But, all in all, it was a fun trip and it was nice to get away. The most important thing is that the other kids enjoyed themselves and that was the ultimate point of it!!!

July 24th, 2009

2009-07-24T08:26:00.000-07:00

Our family is actually going to get out of this house this weekend!!! I am definitely ready for a change of scenery and we are going to head to Reno to stay the weekend. The trip is a birthday present for Lacey, who turned 9 on the 20th and Andrew, who turns 8 on the 29th. Happy Birthday!

Circus Circus is a great combination for the two of them. Andrew loves video games, which there are plenty of there so he will be in heaven! Lacey is my autistic one and her "thing" is dogs. As luck would have it, there is a circus dog show being performed there this weekend!!! Besides that, as down as I have been...I just don't see how you cannot smile and/or laugh in a place like Circus Circus. So, it should benefit all of us.

On the whole, our family is doing as well as can be expected. I am having the hardest time, but have weekly sessions with my counselor and I believe these sessions will start to help me heal. I have a wonderful counselor that I feel really wants to help me. She does not want me to take on anymore children or do anymore outside caregiving so that we can find out who I really am without that. That is so strange for me because since the age of 19 all I have done is take care of someone else. I really don't know who I am outside of that. And, then I think....well, isn't that me???? And, yes, it is, but I think her point is to learn what is it that I can do that is just for ME. Imagine that! The strange and hard part is....I don't know what that is! So, this will be a big challenge.

Guilt has been a big one for me this week too. Guilt is horrible and can destroy you. I keep trying to fight those thoughts away, but it is difficult. The thoughts of: could I have done anything different for Faith, should I have waited longer to do the surgery or should I have done it sooner, should I have known something wasn't right.... I was her mom and it is hard not to feel like I didn't do enough/ I didn't protect her enough. Now, there is no way to know. There is no turning back the clock and changing anything. What is done is done and I have to learn to accept what is.

I recently received a packet from an organization called Grief Haven. A friend of mine asked them to send me their information because it is an organization set up to help Parents that have lost their children. It was founded by a mother who lost her daughter to a rare sinus cancer. They sent me a wonderful packet including a video to help deal with our loss. But what I wanted to share was part of the packet that included a list of what things to "avoid" saying to someone grieving. I laughed when I read it because it is soooooooooo true!!! But the thing is....people don't know what to say. I was right there, too, just a year ago. Before I lost my mom, I had no idea what would make someone feel better at such a horrible time. Then, when I lost Faith, I REALLY learned what I didn't want to hear!

I have had numerous people ask me, "what is the right thing to say?". So, I figured I would share it for those that want or need to know. DON'T FEEL BAD IF YOU HAVE SAID ANY OF THESE THINGS! Like I said, most of us have NO clue what to say and that is why I am sharing. This list was compiled after asking "real" grieving parents what comments they did not like. The "avoid" list is much larger than the "comfort" list, as you will see. That is because.....honestly...there isn't much that IS comforting.

Things to avoid:

"at least he/she is no longer in pain"
"it was God's will"
"you'll be ok- you are strong"
"you must move on"
"He/she is the lucky one, we are stuck here"
"she/he is in a better place"
"there is nothing you can do about it"
"I know how you feel" (you can't possibly know unless you have lost a CHILD)
"he/she would not want you to be unhappy"
"you were lucky to have had her at all" (*this is one I question....because I do feel lucky to have had Faith at all. But, it was on the list so it must bother some grieving parents)
"thank God you have other children"
"At least you knew that kind of love"
"call me if you need anything" (YOU are supposed to reach out to the grieving person, not the other way around!)
"you can always have more children"
"I know how you feel - we just put our dog to sleep"
"he/she is in Gods hands now"
"you are still crying? Hasn't it been two years now?"
"It must have been their time"
"you will see them again one day"
"God only takes the best ones"
"just think, it could have been worse"
"time heals all things"
"everything happens for a reason" (*this one I, personally, am not sure about because I would like to believe things happen for a reason eventhough we may never understand until we meet our Maker)
"have you thought of taking a trip?"
"don't be angry, you know better"

Never compare losses, such as:

"at least you got to say goodbye"
"I know, I lost my father 3 years ago" (again, losing your child is different than any other loss)
"but you never knew him/her, since he died at birth"
"it must be so much worse to have a child who suffers for a long time"
"it must be worse having him die unexpectedly and never getting to say goodbye"
NO MATTER HOW OLD THE CHILD WAS OR HOW THE CHILD DIED, THE RESULT IS STILL THE SAME.............

Now, for the short comfort list:

"I am sorry for your loss"
"I miss (name) too"
"I am sorry. (name) had a beautiful smile" (or anything positive)
"I know how much you loved him/her"
"He/she told me how much he/she loved you and I know how much you meant to him/her"
"I care so much. I honestly don't know what to say"
"I can't begin to imagine what you are going through"
"I am so glad I knew him/her...they changed my life"
"I think about you all of the time"
"I miss his/her laugh and company" (or whatever it is you miss about the child)

So, the bottom line is that the best way to comfort someone that is grieving is by not saying much. Just by being there, letting them know you care in your way will make the grieving family eternally grateful to you.

Hope this is helpful.

Shelly

THANK YOU!

2009-07-19T16:10:00.000-07:00

We would like to thank everyone that contributed to the raffle to benefit our family through Hearts of Hope. In times of such grief, an amazing thing happens....you learn that there are truly loving, giving and generous people out there that want to lend a hand. Most of these people we have not even met personally and that makes it even more inspiring.

Here are the winners:

1. E. Heckelman: $50 gift certificate to Cafe Bernardo
2. K & A Scott: A haircut with Angelina at Deeda Salon
3. G. Dyke: A birthday party at Max's Miracle Ranch
4. P. Thompson: A birthday party at Max's Miracle Ranch
5. R. Adamson: Photo session with Princess Photography
6. N. Baggett: Fireworks package

You should be hearing from Andrea, soon, to collect your prizes.

Thank you to all that contributed. We are humbled by your kindness.

The Duarte family

July 12th, 2009

2009-07-12T13:04:00.001-07:00

Today has been a year since my mom passed. So much has happened this past year and I am sitting here having a hard time wrapping my mind around it. Two of my most favorite people I have met in my life are gone. Gone.

I mean, how did this all happen? Why? What the heck are my life lessons? Life is extremely complicated and there is no way to figure it out.

I have been told that the pain will lesson with time, but I have to be honest that is really not happening yet. Not with either of the one's I have lost. I was extremely connected in a strong way to both of them. In a way I feel very lucky to have had such deep love with them, but it also makes their loss harder because it leaves such a huge void in my everyday life. My mom and Faith were part of my EVERYDAY life.

There is not a day that goes by that I don't think of them. With Faith....I don't think even a minute goes by. I have her ashes in a necklace and I HAVE to wear it or I freak out. That is my way of having her as close to me as I can get her and it gives me comfort.

Monty has gone back to work, but I am home with the kids. I think Monty being out of the house, is coping pretty well. He has something to do everyday and is not in this house all day long with memories around him everywhere. It is not so easy for me trying to be here, trying to keep a "game" face on for the kids at home and give them all the attention they deserve when sometimes I don't even want to face the day. Morning comes and I don't really want to get up because I don't have Faith and I don't have my best friend, my mom, to call and cry to. The solace in that is that hopefully they are taking care of each other which is more important that my feelings.

But, my life has changed so dramatically and I am very lost. I don't know where to go from here. I am trying to pour my attention into everyone at home, but school starts in the middle of August...and then what? I can't stay home all day long without Faith. So, those are personal things that I will have to figure out on my own. Maybe those initial days of quiet I can find some time to really reflect on that. Reflect on what I see myself doing from this point on. I know it has to have something that has meaning. That helps a person/s in some way. I have the paperwork to be a volunteer at UCD, which I would LOVE to do, but I don't know when I will be ready to walk in there again. So many memories, but I would love to and someday I will have to try to go in and try to face the emotion and fear. Hospital life, especially at UCD, has been my life for 5 years and strangely I miss it. So, volunteering there and spending time with the great staff and children there would (I think) renew my spirit when I feel up to it. That may be my way to give back to Faith and I am pretty sure my mom would be proud of me as well.

So, today is just a hard one because of that year mark and reflecting on a lot of things. I miss my mom. I miss Faith. I hope they are at peace and that eventually I can find some of that peace, too, and bring back some of my happiness they took a little bit of when they left. Special girls they are. Both probably taking over up there in Heaven with their ultra amazing personalities! Both of those girls had such a love for life, music, people, dance..........Heaven is certainly a brighter place.

Shelly
- Love you Mamacita. Miss you very, very much. And, Faithy, oh...man...you know mommy loves you and misses you all the time. Take care my special ones and save me a place right next to you BOTH!

July 5, 2009

2009-07-05T23:39:00.000-07:00

It has been a week...a week since her service. I honestly am having a hard time coming up with the right words to describe this week. The main thing is that the service made things FINAL. I was very busy prior to it...had lots to do, put together, arrange, etc. That is the way I work and like to be very busy.

But, now, the service is over and it is really hitting home that this is REALITY. There is no more Faith that is going to wake me up in the morning, no one going to ask me the same question over and over again 100 times in a 5 minute period, no one to crawl all over her brothers head, no one to sing to at night. It is and all encompasing grief. I wish I could say for other parents that it gets better, but at the moment I cannot. I absolutely cannot because for me...because I am not as busy...and things are really over....it is a million times worse.

And, if feels like she is so easily forgotten already by so many and that is very difficult. It is easy to understand because they have lives and have children to tend to, but it feels as if I walk in a bit of a fog and don't seem to relate to many right now.

I tried going out with friends to a few bars the other night. This is something I haven't done while Faith was here because of concern and having a knowledgeable person watch her. I will say, I laughed and thought it was fun. However, when I got home...all I could think is that ---is that was I was missing? If so, you can have it and I would MUCH rather be stuck at home with my "challenging" kids over most other things.

It is also weird to even have that freedom. That is a new concept. Not to be so afraid of how much public interaction you expose your sick child to, what you are bringing home, who is going to take care of them if your not there, what if there is an emergency. The list goes on an on. It is such a void I feel that I am not sure will ever go away.

Some people have told me to take on another kid. I almost had a heart attack because I need to grieve for Faith. That is first and foremost for myself and my other children right now. I will never say never, but I don't see myself being able to do that for a very long time. I am afraid of the heart break and there is no "replacing" Faith. She was one of a kind and all I want to concentrate on is trying to get better.

I start counseling tomorrow and my younger ones get to start grief group. My older ones just finished the group because of grieving for their grandmother. But, the older kids seem to understand this much better where the little ones could use the help. Thank heavens there are these programs out there!

Anyway, that is our first week. A lot of emptiness. But, with that emptiness the other kids are getting more quality attention. So, there are goods and bads, as always.

We are still holding out heads up and are now able to make it out in public. Nights are torture,but hopefully I can learn some self help skills with my counseling for that.

Goodnight to all. I am grateful to those of you that still check in even though Faith has left. This experience has really shown me the good people in my life verses the not so good ones. Valuable lesson!

I will check back in a week and hopefully be able to report that I am doing a little better. Maybe i will even get a dream by then like Monty did...the lucky guy!!!!

Take care.

Shelly

Faith's service

2009-06-28T13:02:00.000-07:00

Faith's celebration of life met all my expectations. Jeff and Laurie Jennings, the Pastor and his wife, did a beautiful job of conducting the service and helping us make everything go smoothly. I am so grateful! They are special people and I hope to continue a friendship with them from this day on. Thank you for helping to make such a sad day, more about the love, friendship, strength and love....how we all make a difference no matter how long or short we are here on earth....it was exactly what I wanted to get across. It was no accident our paths crossed.

Other people I want to give special thanks to are:

Jeff and Laurie Jennings: As mentioned above, thanks for helping meet all my expectations for celebrating the life of my unique and unforgettable daughter.
Jeff and Nancy Baggett: They made the DVD, helped set up and just offered general support. Nancy is my best friend and I couldn't ask for a better one.
Mike and Desiree: Thank you for the beautiful tribute posters of Faith. I will cherish them forever! And, thank you for introducing us to Jeff and Laurie. What a blessing. We have a special connection with you two that I hope to continue.
Miranda: You have an amazing voice and I am so appreciative of you singing "Borrowed Angels"
Trina: Thank you for speaking, your support and the awesome brownies!!!!! Your support and knowledge and comforting ways make you someone I will love forever.
Lindsay: Your speech was lovely, you knew Faith so well and I am grateful you were in her life.
My aunt: Thank you for helping me get the house ready and dealing with my stress. Also, for making us laugh so hard after the funeral that it took my mind completely off the sadness. You are my "weirdo" and I Love you.
Gemma: Thank you, thank you for adding my special yellow butterfly. My mural now represents my two beautiful angels....one a black butterfly, the other yellow.
Linda Gordon: Thank you for helping with the yard and for loving Faith and coming back into our lives.
Pam: Thank you for taking care of Karen so I could concentrate on Faith's celebration. Thank you, also, for being so wonderful to Faith....reading her stories, singing with her, picking flowers, etc...she loved you dearly. We are lucky to have you.
Andrea: Thank you for doing the raffle, starting the meals while we were in the hospital and for your general support and kindness. You are very special.
Turning Leaf Photography: The bookmarks were beautiful as were all our family pictures. Please use Michele, the owner, for your photography needs!!!
Kim F., Stephanie, Tom and Linda, Melissa, Glenda and many others....thank you for bringing food to help us out. There was plenty and it was all yummy.

To EVERYONE that came, I am SO grateful for your presense and support!!!!!!!! Thank you to everyone that brought food, cards, made donations and especially spoke on Faith's behalf. I know it was a long trip for many of you and I am very grateful you still made it. Everyone there I think fondly of and it warms my heart that you were there to honor my special angel. I really think Faith would have loved the day.

Celia, Barb, Dr. Vlautin - thank you for taking the time out of your busy lives to pay tribute to Faith. I can't even express how much it means that you guys were here.

Celia, I have known you from the beginning of Faith's life and you have been there for us in so many ways. All the UCD staff knows how great you are, but it never hurts to hear it again. You have definitely found your calling in life and are such a great support for the heart families. I will never forget you and will miss seeing you.

Barb, you are now right there with Celia. I knew you in the PICU when you cared for Faith and now you are doing a fantastic job with the heart families as well. You were a huge support for us those two months while we were in the ICU and I thank you.

Dr. Vlautin...what can I say? You worked tirelessly on Faith and you never gave up on her in those first few weeks. We were not ready to lose Faith and you gave us two more months with her. Two more months we desperately needed to allow us to eventually let go. You, too, are one of those special people that have found their calling in life. You were a true blessing to us. Thank you. (and for you to show up at her service....it just means more than I can express)

Kathy, thank you for your lovely prescence and for giving Faith joy with your special voice everytime she was in the hospital. You are a unique individual and our family will always remember you and how much Faith enjoyed music time with you.

I want to thank other medical professionals that were not there:

Dr. Loomis and Sutter Pediatrics. They were always accomodating to us and Faith loved going to their office. Dr. Loomis was not only Faith's primary care doctor, but is a warm hearted man and felt like a friend.
Dr. Choy and the entire cardiac specialty staff. Dr. Choy, you know how special you are to me, and just like with Dr. Vlautin, you were a critical part of why we got to enjoy Faith longer than originally expected. I think extremely highly of you and will miss seeing you.
Dr. Raff . What can I say, except you are just an amazing doctor. You have energy like no one I have ever seen, are smarter than anyone else I know and you are just incredible. I always appreciated your honesty and I thank you for doing such a great job on her heart that she was able to keep going a little longer for us. UCD is fortunate to have you.
Linda Tennyson. You tried so hard to deal with all of Faith's issues as challenging as they were. Thank you for being so great to us, always returning phone calls and for coming to say hello while we were there. It meant a lot.
Pediatric GI Surgery Team. I know that you didn't really want to "explore" on Faith. But, I appreciate the fact that you did and appreciate the hard work you put into trying to keep Faith here.
Nurses and Staff on the Pediatric floor . The Pediatric floor has a whole different energy and there are a lot of special fun nurses, child life specialists, MUSIC THERAPIST, etc. Faith always enjoyed her time with you!!!
ALL PICU doctors and nurses. You are all amazing and work so hard! You helped us through a very difficult time and did it with compassion, respect and love. The PICU team is a group of dedicated professionals that do an extremely tough job. However, they have the best of the best!

So, now, for me...so I can remember what my tribute was to my special little Faithy...I am going to write the speech I said. Ten years from now I would like to remember. (A funeral is like a wedding. You hardly remember what happened, what was said, and you wish at the end you had more time to speak to certain people. I guess when something is so emotional and overwhelming that is bound to happen.)

So here is my Tribute to my Faith:

Sometimes life doesn't make any sense:
Why was a child given to another couple when this woman already had two other children? Why would she not want to keep her third? Well, maybe it was to allow this child (me) to have a positive adoptive experience to allow me to want to do the same for another...

Sometimes life doesn't make any sense:
Why did I decide to work at a care home for medically fragile children when I thought my calling was to be a teacher? Maybe to meet a child that needed a permanent home that I would fall in love with (Andrew) and lead me to a place where I would become a foster parent and allow other children to enter my home...

Sometimes life doesn't make any sense:
Why did Placer County keep calling us to take Faith when we were not looking to adopt another child? Why was my husband so open to taking this child when she had so many complications and he was set against having anymore permanent children?
Because this child was meant to be ours...

Sometimes life doesn't make any sense:
Why did God give me this child that not only had so many medical challenges but for almost 2 years did nothing but cry. I rarely slept, I lost 20 pounds, and was always at the hospital or doctors office.
I will admit, I am not the most patient of people. I have Portuguese in me. But, for some reason with Faith, I had all the patience in the world...

Sometimes life doesn't make any sense:
Whey did this child who was unhappy most of the time all of a sudden become the child that loved medical appointments? I mean, at one point, she was the child no one wanted to get close to -they stayed back and gave Faith her "Faith bubble" of space. But, it was like a flip was switched one day and she all of a sudden wanted to go to the hospital. She loved to go see Dr. Loomis and Dr. Choy! She couldn't wait to get in the car and would bug me until it was time to go.
I think it was a lesson for us at how you can turn a negative into a positive. She showed us how it is all in your attitude...

Sometimes life doesn't make any sense:
Why did my mom get lung cancer and leave us so quickly eventhough she didn't want to go? Why was her death so tragic?
I think it was #1 for her to get used to her place in Heaven to be ready to receive Faith and #2 it was for me to understand how important it is to have a peaceful death...

Sometimes life doesn't make any sense:
Why did Faith's heart surgery go so well, but everything else went so wrong?

This is something I don't have the answer to. I do know that events leading up to our final moments with Faith prepared us to allow Faith to have the peaceful death that Faith deserved. *(a special thank you to Cathy for that too :)- love to you)*

I am hoping, in time, that all this will too....make sense.

In the meantime, our family will forever cherish the happy moments Faith gave us. The unconditional love, strength and courage she showed. We are forever changed by Faith.

So, sometimes....no....life doesn't make any sense. But, all of a sudden, at some point, it might. Probably when you least expect it. That is what started the slogan of the two months Faith was fighting for her life of: "Keep Faith". Because you never know why some things happen or why you are given the challenges you are faced with. You just have to keep faith it will make sense one day.

But, for now, our family is putting one foot in front of the other and trying to learn to live without our precious Faith. However, we are a stronger family because of her and we will forever grateful for our "Borrowed Angel".

Shelly Duarte

And, now, this blog, will turn into about how the Duarte family continues to move on. It will focus on the other children that deserve just as much recognition. I have loved "meeting" you all through this incredible blogging world and hope to continue hearing from you. Still continue to "Keep Faith" through all of life's journeys and thank you for following and caring about our family.

Almost here

2009-06-22T10:44:00.000-07:00

I cannot believe Faith's service is almost here. I can't believe I have gone this many weeks without my baby. The emotions you go through are indescribable. The only way I can somewhat describe it is.....that I feel like I am living in someone else's body right now. I am going through the motions because I know I have to. My days I fill with talking to my kids, watching a movie with them, going on a walk, cleaning and planting outside. Nights are HORRIBLE. That is the time when I am all alone with my emotions and they flood me. I ended up going to the doctor to get some help. It is strange, but I actually sleep until 8 or 9 am. Something I have never done before (unfortunally induced by medication because I wasn't sleeping AT ALL prior to getting my "help"). Sounds like it would be nice to sleep in that late right? But, #1 it is due to medication, which I hate to admit I needed and #2 I would so much rather be woken up at 6am to Faith yelling "mommy...mommy...I up". My house has a completely different vibe to it without that little personality filling up the room with her energy. That is the main thing I am going to have to get used to. I can see why some people want to move after a child's death because there are so many memories everywhere you turn. But, that is not what I want to do. I love those memories as painful as they can be at times.

Father's Day was hard for Monty, although he never said a word. He has kept himself very busy fixing things around the house. We added a slider door, so he has had that project to help him out. However, he got the best present he could have ever had: Faith visited him in his dream. Faith was walking in it! For those of you that didn't know Faith, Faith couldn't walk. She scooted around on her butt. So she came walking up to him and put her hand in his and asked if they could drive a yellow school bus. Faith loved going to school on her yellow bus! So they got in the bus and he let her drive. They drove all around and Faith backed the school bus into a ditch, but they were able to get it out. Then, they drove the bus to our house. Apparently when Faith got here, she immediately resorted back to scooting. She scooted from our front door into our living room and then he couldn't find her anymore. But he got to be with her for Father's day, even if only in a dream. What a gift.....the best one anyone could ask for!!!!!!!

Hope everyone else had a nice weekend. I will have a lot to keep me busy this week, which is a good thing. I need that! I will see a lot of you in just a few short days. Aaaahhhhhhhhhh!!! Hope I get it all done!!!

Shelly

Date and Time confirmed.

2009-06-11T18:33:00.000-07:00

Services are confirmed for June 27th, 2009 at 11:00am. See right hand side for directions.

Have a date

2009-06-09T16:04:00.000-07:00

A date is confirmed for Faith's service. It will be on Saturday, June 27th. The time, however, is not confirmed yet but will either be at 11am or 1pm. Hope that helps allow people to coordinate their weekend somewhat.

Yesterday was a horrible day for me. I cried pretty much the entire day. My eyes were so puffy they could barely open. My heart felt like it was going to burst out of my chest....it wanted to burst out and find my Faithy. My poor kids were so worried and Andrew, the youngest now, wrote a letter to Faith telling her how much mommy was crying. As much as you want to protect your children, in times like this it is impossible to suppress your feelings. And I guess it is not that bad of a thing for your kids to know you are human...you can feel sad, angry, glad, happy, etc. Life has its ups and downs. No one is immune to them and no one is perfect, definitely not me.

I think it was such a horrible day because I was in anticipation of today. Today I picked up Faith. And you know...I haven't cried (yet)...meaning I haven't cried TODAY...I've definitely cried away too many other days. But, it made me feel good to bring her home. Bring her back to the people that love her and the people and home that she loved so much. I picked her up with my kids and they all took turns holding her while we went on errands. We kept saying that Faithy was getting to do her favorite thing "go bye, bye in the car". We smiled, we laughed about funny things she said and did. It was good and maybe this will be a little start to our healing.

*by the way, if anyone needs a funeral home: We used Chapel of the Hills and they were WONDERFUL to us. No pressure, cost seemed reasonable and the presentation of getting Faith's remains was beautiful. They had her on a pedestal in the chapel with candles glowing and a red rose over her urn. I don't think it could have been handled better.

June 8th, 2009

2009-06-08T10:30:00.000-07:00

Just wanted everyone to know that I still don't have a date or time confirmed for Faith's service. I promise to post as soon as it is set.

In the meantime, our family is trying to put one foot in front of the other...taking things day to day. Still haven't felt like seeing anyone, but I will get there eventually. Kids seem to be handling things well and I am always so proud of them.

Thank you for all the love I feel come pouring out of the entries you write to us. I can't even express how much it means.

Shelly

June 5, 2009

2009-06-05T23:44:00.000-07:00

Just wanted everyone to know that we are tentatively aiming for the weekend of June 27th or 28th for Faith's service. I am waiting for the Pastor that I respect to give me times that he is available that weekend and then I will post confirmation. I will ask for RSVP's to be able to somewhat prepare for how many will be in attendance.

As for this week....let me tell you that it has been extremely difficult. However, I have learned with the passing of my mother not even a year ago, that we are still in a stage of denial and have yet to feel the full devastation of Faiths passing. We are walking around in a fog and don't really know what to do with ourselves.

The night Faith passed away, Monty and I felt like we wanted to stay down in Sacramento because we were not sure we could come home and see all the reminders of our baby girl. However, after 15 minutes of being somewhere other than home, we knew it was not the right thing. In fact, I was about to have a full blown panick attack. So, we packed our stuff up and came home to see our other children. Let me tell you...this was the best decision we could have made. Our other kids are so strong and have so much insite into the world that THEY are helping US with our grief! They are amazing and I am very lucky to have them in our lives. They are what will help us move forward from this terrible loss!

Our home is not the same, nor will it ever be. Now, we have to accept the differences as hard as that may be. Our life has been almost entirely centered around Faith and her well-being and now we have to shift our thinking into making the other children the ultimate center. They have earned it 100%, but it is hard to completely do so when you are grieving the loss of someone so special. Grieving the loss of someone who made us all feel unique and could turn a bad day into a great one with a smile or the shouting out of our name as we walked through the door. We have learned so much from her and her ability to perservere under any circumstance. We are more united as a family because of Faith.

I have been working on a memorial card/keepsake for her and I just can't find the right thing that sums up who she was. How do you explain someone that had so many setbacks yet still had the power to love unconditionally? How do you explain the power of a small little person that was able to teach us life's big lessons.......how to love, how to care, how to laugh, how to perservere through adversity, and how to never give up????? Faith taught us so many of life's lessons, big and small, that we will carry with us forever. Monty and I are better human beings because of her. My kids are more compassionate, understanding and accepting individuals because of her.
Those are things you cannot teach through words but must be learned through life's lessons.

What I pray for the most is that my other children become better human beings because of having Faith in our lives. I think this will make it worthwhile. I want to see my kids live by the Golden Rule: Do unto others as you would have done unto you. I think we all get that now. Because, it doesn't matter how big or small your contribution to society is....it all means something. I am pretty sure the other kids get it, lets just see if they prove it when all of lifes trials and tribulations are thrown at them.

Faith was a child that no one else wanted. They called us in desperation and eventhough the ending wasn't what we hoped for...we still do not regret our decision. It was meant to be and I believe someday it will be fully shown to us what it was all for. Until then....I will wait for my beautiful child to be shown to me at the Pearly Gates of Heaven. I am no longer afraid of death and embrace the day it comes. Until then, I have realized the importance of making a difference in even ONE person's life. It DOES MAKE A DIFFERENCE.

Live life by the Golden Rule and never think that anything you say or do doesn't impact someone. You never know....

Until I unite with Faith again, this will be her legacy for me. I will live my life in her honor. I will live my life showing her strength, courage and the ability to love and have hope through all obstacles. Until then....she is my strength.

I will let you all know when the service is set for. Love to all and remember that it is not the length of a life but the depth of a life.

Shelly Duarte. Mother of a new, bright angel of God: Faith Renee Duarte. 1/17/04-6/1/09.
Forever our Motto will be to "Keep Faith". (without it all hope is lost.)

Final Goodbye

2009-06-01T15:28:00.000-07:00

Faith Renee Duarte passed away peacefully in mommy's arms at 1:30pm. It was our priveledge to be Faith's parents and I do not regret any second, good or bad, spent with her. She was a miracle of a child and had the strength of a million. I doubt I will ever see another like her...she was far too special.

Faith had the ability to make you feel like you were the most amazing person in the world. She loved her family, friends and life in general to the fullest. As her daddy said, she was a magnetic personality. Those that knew her couldn't get enough. And even during this incredibly hard journey, she was still able to touch the hearts of many, even many who did not even know her. She showed true courage and the ability to fight for what she loved. Fight to stay with the family that loved her so dearly.

I don't know what life without Faith will be like. She was the center of our world and it will never be the same. But, I am proud that we were picked to be her family for 5 amazing years.

Faith will now be able to sing, dance, run and play and have no more "owies" or hospital stays. I am sure her grandmother will read her lots of storybooks and pick lots of flowers with her. She will be free.

We love you Faith. You touched our lives in all the best ways. No regrets. Nothing but neverending love for you, my precious baby girl.

Can't wait for the day I see you again Faithy. Love you forever.

DAY 61

2009-05-31T19:18:00.000-07:00

Faith has been sleeping all day, even without sedation. Her blood pressure dropped and she received a transfusion which did help.

It doesn't seem like all the medical team is on the same page as to what to do with Faith...essentially if there is hope or not. It is very confusing and scary. I say scary because of the bleeding issue and what her death could end up looking like. For those of you that know me and how my past year has been, you understand. I took care of my mom until her last breath and she did not pass peacefully. I have so much anxiety about having that happen again and I think it clouds my judgement.

If there is that inch of hope, how do you not hold on to that? However, if holding on to that means that she won't pass peacefully because of it.....because we waited to long.......i just don't know.

Monty is completely broken hearted and is really holding on to that bit of hope. Maybe I am feeling it is unrealistic, but what if I am wrong? I don't want to keep delaying the inevitable, but I don't want to turn my back on that little window of possible hope either. I am incredibly confused and so tired. I have never had this kind of exhaustion take over me since it is so many types of weariness. I pray for a clear answer. I pray for an answer soon. I pray I get it so I can do what is best for my baby girl.

DAY 60- better explanation

2009-05-30T19:07:00.000-07:00

So I just talked to Pediatric surgery and have a better explanation of what is going on. Unfortunately, I have not been well so haven't been able to hear it myself the past few days and have been getting second hand information.

I said that Faith is considered on "comfort care" and essentially that is true. We want to keep her as comfortable as possible. The other part that is true is that if Faith's blood pressure drops, they will not be using medication to bring it up due to the fact that it has too much of a negative effect on her digestive tract.

Now for the part that leads us to why she may be at the end of her stay here on Earth. She has had more blood coming out of her wound-vac and G-Tube site. Because of that, they did an exploratory scope which showed that 50-70% of her stomach was dead. Not good. However, the stomach has lots of vessels that bring blood supply to it, so there is still some hope (although small) that we can get the stomach to replenish itself. That is where hope and prayer come in.

The extremely concerning part is that output stopped out of her ostomy last night. That leads to concern that there is a hole that has developed in the stomach which leads to the even bigger concern that more of the intestine has now died (become necrotic). Surgery is not an option because all of her digestive tract is too fragile and the fact that we cannot give her blood pressure medication before, during or after surgery because it will cause more damage to the areas we are trying to fix. Again, going in that circle.

However, at this point we (and her doctors and surgeons) are not willing to throw in the towel because of two things: one is if the one of the vessels that goes to the stomach clotted and has now broken lose, maybe the stomach will gain the blood supply it needs to replenish itself. Two is that if there is a hole, if it is small enough, it has the potential of closing on its own. We will know if it starts closing if there is output out of her ostomy.

Only time will tell us if there is a hole. If there is she will get bacteria in her bloodstream and become septic. If she becomes septic, we cannot use the bloodpressure medication to help her get through it. Not to mention, she is already in multiple organ failure and sepsis causes more of that.

At this point, Faith is a DNR if her heart stops because we feel that is her way of telling us she is done. She is also DNR with blood pressure medication induced by the physicians.

When to say enough is enough: if her heart stops, if she bleeds more than we can give and/or she becomes septic. We just have to wait it out, which is the worst part of it all and why both mom and dad need to be here because things can change so quickly.

There is minimal hope, but still a small window. If fluid comes out of her ostomy we will be throwing a party! But, at this point there is none and she continues to have blood loss.

Hope that helps explain things a little better and I will let everyone know when we are 100% in full comfort care and have absolutely no hope left. Until then................we Keep Faith and pray, pray, pray.

DAY 60

2009-05-30T12:00:00.001-07:00

I have the other children settled with family and friends and Monty and I are here until our time runs out. Faith looks so beautiful and peaceful. We have asked that they cut back some of her sedation so we can have more time with her awake. They are willing to do that and we will watch to make sure she is not uncomfortable. Obviously her comfort is our top priority so hopefully we can find a happy medium.

It is so frustrating to walk in her and see her looking well, only needed daily dialysis instead of continuous, not having blood pressure medication and having vent settings that are so close to being weaned......and yet it is almost the end? It is all stuff we just can't visibly see and makes it that much harder.

If nothing happens over the next week...meaning she doesn't declare that she is done by having another massive bleed or a major drop in her blood pressure or respitory status....they have said they will scope the stomach again and see if there is improvement. It is hard for the doctors because her stomach dying like that doesn't make any sense because it didn't look like that when they did the ERCP. Since the ERCP there hasn't been any major setbacks to cause it. They don't know why this has happened.

IF the stomach looks better...I still don't know what that will mean for Faith. If it does not look better, we are going to have to start thinking of stopping some support because we don't want the tissue to start disinegrating and cause a massive bleed, essentially bleeding out. It is ugly.

So, for now, we are in a holding pattern for the week unless she declares herself beforehand. All I know, is that I don't want her to suffer. All I know is that I want her to pass peacefully with mom and dad by her side. All I know is that I will love her FOREVER.

DAY 59

2009-05-29T21:01:00.000-07:00

We have had to switch to "comfort care" for Faith today as there is nothing left the doctors can do to save her. They will continue to use dialysis each day for comfort (so she doesn't fill up with fluid) and she will continue to be on pain medication and sedatives. If a bleed were to start and her blood pressure drops, they are refusing to give any more vasopressures since they damage the gutt so much. It is just a viscous cycle that we have been chasing these past two months that doesn't want to stop.

I came home tonight to talk to my other children about what is going on. They did pretty well and just want Faith to be free of pain. We are all happy we were her chosen family and talked about how lucky we were to have had her for 5 years. I also had to ask family and friends to watch them since Monty and I will be bedside until the end.

I really wanted to be able to bring Faith home with hospice, but I guess that may not be a realistic plan. It is unrealistic because of the possible bleeding issues that we would not want other children to see. All they need to remember is their cute little sister that loved her family to no end.

For those of you that were very close with Faith that would like to visit....I can't give a time frame of how long she will be here....so I would come as soon as you can. We are at UC Davis Hospital. 7th floor in the PICU. Buzz in to say you would like to see Faith Duarte. We are in bed 10 which is at the very end.

Thank you to everyone for all your encouragement, love and prayers.

DAY 58

2009-05-28T19:58:00.000-07:00

Faith is off her Dopamine and they are trying intermittent dialysis.

The scope was done of her stomach and it was not good news. Half of her stomach is necrotic (dead). Dr. Haight isn't sure what are options are and is going to review things and he will be part of our meeting tomorrow.

So, basically, almost her entire digestive tract is not working well or at all. She does get nutrition through TPN, but it is not a great long term solution, but it may be our only one. They still do not want to put in a J-tube because all of her intestinal tissues are too fragile. I don't know if that is something that can improve or not. Guess that is a question for the team tomorrow.

I feel better and am going to head to bed pretty soon to ensure I can make it tomorrow. It's not like I even WANT to be there, but I know I need to be. Time to face the music.

DAY 56 and 57

2009-05-27T18:20:00.000-07:00

I'm so sad. I was supposed to go switch with Monty at the hospital today to see my baby, but I feel really sick and couldn't go. I think that I just didn't get on top of a migraine headache soon enough. I hope it is that and I will feel fine in the morning after getting some rest and can go be with her. I miss her so much!!!

So, apparantly they have been able to wean some more on her vent settings as well as her blood pressure medication over the past few days. The antibiotics they have been using for her infections seem to be helping and keeping things at bay.

She has been more awake and fiesty again. She does not like her ET tube and is pushing hands away from her. That's my girl!

Tomorrow they are going to scope her G-Tube to see if they can find a reason why our first attempt at feeding her through it failed. Let's hope it produces an answer.

Friday we have a meeting to discuss with her physicians where we are at and what the overall plan is and how well they think they can get her. I don't like having these meetings, but this one isn't quite like going in "the room". It is still in that room, but more of a discussion instead of the gloom and doom talks we have had in the past. One of the topics will be at what point do we consider a trach. for her if she can't wean completely off her ventilator.

For me, the most important thing is to get her home. Even if being at home is not for a long period of time, and could possibly mean hospice, I just want her home. I want to be able to crawl in bed with my girl and hold her and try to enjoy as many moments as I can in the comfort of our home. Whatever it takes to make that happen, is what we will do! Not to mention, that over the years of doing foster care and taking in fragile children, I have seen the miracles of what can happen to children when they are out of a hospital setting and are with people that love them.

My son, Andrew, is one of those people. He had an extremely rough first year. There was one point of hospitalization that they were not sure he would make it. He was a very sick little boy. He went into a good foster home and shortly after into our home for permanency. Andrew had a broviac (a central line) for nutrition of TPN and lipids. He also had a G-tube. He was failure to thrive. Andrew is now a 7 year old active little boy with no central line and no G-tube. I am 100% confident it was the feeling of love and permanency that did it.

I am not unrealistic in that love will save everyone. We do not have full control and there are other plans for some of us to be brought home to God sooner than wanted. All of us are on loan. There is no forever. But, I can still have the hope that being in a good, loving home environment can make a huge difference because I've seen it with my own eyes.

So, whatever the long-term plan is for Faith....I don't know. I just know that for now, I want it to be that she can come home to us and give us the chance to see what happens. Keep Faith.

DAY 55

2009-05-25T08:35:00.000-07:00

No changes for today due to the infection. Vent settings will remain the same, we will try to stay even on her dialysis and maintain blood pressure. She has not had a fever all night, but she has had a few drops in blood pressure. They did start her on two different antibiotics that will hopefully do the trick. All cultures will be repeated again, today, out of all her lines. Her Dialysis line has been in a long time and if that is the source, they will have to move it. That is the scary part since we cannot use Faith's upper body for lines. I think Dr. Raff said the next spot would be in her back and I can't even imagine that. I pray for that not to happen.

Otherwise, she is looking ok. I was very excited to see her moving both hands! She has not moved her left side for a few weeks now, so I was extremely happy to see that. She is slightly jaundice, ok with her fluid retention and alert for short periods of time.

As it has been from the beginning...we wait it out and see what Faith does and continue to do things on her time.

DAY 54

2009-05-24T13:08:00.001-07:00

More output of blood last night so Peds surg. came this morning to change out her wound-vac and see if they could see any source. When the wound-vac was off, they said that her bowels looked great! They believe the excess blood is coming from the granulation tissue that is forming under the wound-vac. Granulation tissue is new tissue growth...the growth we want to allow her belly to close. When you have a wound that is trying to heal, more blood goes to that area to allow healing. So that was very encouraging news and now we know not to be so concerned. They will have to watch her blood levels closely while this is happening and she may need platelets and blood often, but at least we know why. Phew.

Just found out she does have a strep infection in her blood. They are talking to pharmacy to figure out how to treat it. It is complicated because of her being on dialysis and her liver function. They have to find out the best medication for her to metabolize. Due to this infection, her heart rate is still a bit elevated and her temp is slightly as well.

Everything else remains the same and she is looking better today than yesterday. Mentally I feel a litte better, so will be able to rest better and stay more positive for my little girl that we have nicknamed "fighter faith".

DAY 53

2009-05-23T21:49:00.000-07:00

Ups and downs were the choice of the day. Can't have too long of a good streak, now can we???

Goods: Still were able to wean a bit more on the vent.

Bads: Bit of a fever, elevated heart rate, intolerance to G-tube feeds and another source of bleed. The bleed is not large enough to need Factor 7, but enough to need platelets and blood.

Overall, she just didn't look like she felt good today. A lot of old blood came out of her G-tube site after stopping feeds. I think it was between 150-200mls. So, that is enough to make you feel pretty lousy. The fresh blood is coming out of her wound-vac. Her crits dropped from 37 to 28 today...hence the need for blood.

At this point, not tolerating G-tube feeds is frustrating because that means more time on TPN, which is hard on your liver. They don't want to do a J-tube because they fear another perferation could happen in her bowels. I don't know how this will play out and am concerned.

The unit is extremely busy again which adds to my stress levels. Faith only gets one nurse, when you are supposed to have two when you are on Dialysis. Other children are more critical and it is becoming hard to find someone when you need them. I feel like I need to be here 24/7 and I have no sleeper chair in my room since one won't fit. That means I would be awake pretty much all the time. My mind, body and soul will go crazy. Maybe it already is???

So, yes, bummer after my post yesterday. Unfortunately, this is how it has been for all of these 53 days. Guilt is consuming me tonight, as it has multiple other nights, for even having this surgery done. I think I am just tired.

Hopefully tomorrow will be a better, more positive day. I've got to maintain good thoughts...I think I can, I think I can, I think I can..........

DAY 52

2009-05-22T18:08:00.001-07:00

After being gone for a few days and newly walking in, Faith looks really good . Her color looks better as does her fluid retention. She has been awake some and although her eyes still have some jaundice color, they look brighter and more alert. She is continuing to wean on her vent settings and is now breathing over the vent which is very promising!

So, obviously, I am happy and it was such a relief because I was mentally having a hard time this morning on my way over here. I am just very concerned about her liver and still am...but this helps lift my spirits and helps me to try to stay positive. They did a very extensive blood panel this morning, so I will wait for those results before I get myself worked up again. And even then...it is Faith, so you just never know.....

DAY 50 and 51

2009-05-21T09:04:00.001-07:00

Faith successfully switched to the conventional vent!!!!!! Yahoo!!!!! She is doing so well that they are going to continue to lower settings on the vent today and see how it goes. I really think she can do it and we won't have to worry about a trach! Come on Faithy!!!

She is now off all her antibiotics except the antifungal that she may never be off of. They will keep a close watch on her temperature and white counts to be on top of any other infection should something start again. Hopefully it won't be an issue.

All of her vitals have been stable and she is getting close to being off her last blood pressure medication. They have almost weaned off Versed, as well, and are continuing with ativan and methadone for pain and anxiety. She does not seem to be in any pain, though, and when she is awake, has been able to listen to a story or two. Also, her brothers and sisters and friend, Drew, have made her pictures and they are right where she can look at them. Her favorite thing right now is for Monty and I to point each one out and talk about them and read what the kids wrote on them to her. She can focus on each one and then is worn out (there are 6 of them). Very cute!!!!

So it looks like Team: KEEP FAITH is starting to turn some corners. We are still being cautious and are still very nervous, but are more than happy with the way things look at this moment. Thank you everyone for your continuing support!!!!!!!!!!

DAY 49

2009-05-19T22:31:00.001-07:00

Still continuing to have a nice, stable day. We were moved out of our room due to a toilet overflowing, but were lucky enough to get the best room in the ICU...bed 10. It is at the end and is the quietest, calmest and offers the most privacy. Faith has been in this room before, very sick, and made it through. I am hoping this is a sign of good fortune.

I just want to say that I am so HONORED by a certain individual checking in on our blog. I miss seeing you guys and I hope you are finding some sort of peace and healing. I know exactly what you meant by being scared to check in....unfortunately you know all too well how things can change. Thank you for being brave enough to do so. It means so much to me. I think of you daily and wish the best for you and your family. Love to you all.

DAY 48

2009-05-18T21:11:00.000-07:00

Cautiously....today was a good day. We are off epinephrine now and have gone considerably down on her Dopamine (both medications for her low blood pressure). Vent settings have been lowered, as well. They may try again tomorrow to go to the conventional vent.

Ativan and methadone have been started intermittently to get Faith weaned off the Versed, since versed is harder on the liver. It is nice to see her awake more and she does not seem uncomfortable. At times she gets a worried frown, but that is a nice, normal reaction to her situation!

Her wound-vac was changed and the bowel still looks decent. They are using a different method with the wound-vac to try to get the site to start to close. They don't want to use the artificial skin again since they have ended up having to go back in so many times. So, we will see if she can heal on her own. The opening is so large that I asked how long it would take. From the size of it I thought it would take 10 years! But, they assured me that it will be much faster than that. More like a month. It's Faith...so we shall see.

Tonight I will continue to pray for healing and a miracle ending to this story of Keeping Faith.

DAY 47

2009-05-17T19:39:00.000-07:00

I just watched Marley and Me....and I am bawling. That movie shows how I feel. When he says that Marley is not like other dogs when they are discussing surgery or not....that is Faith! You just can't go off statistics or what is "normal". And, like the movie, no one in this world has made me feel more special...just like Marley did for them...Faith does for us. I just can't imagine my world without her. My mind is swirling with images of all the other parents I have watched lose their children and I ache for them. I ache for them and am also scared to be one of them. I shouldn't watch anymore sad movies!!!!

As for Miss Faith, she is doing ok. They have gone down on her Versed, which I think is a good thing. When she is not as sedated, her blood pressure is much better...I think because she is more aware which gives her more will to be here!!! Blood pressure numbers become much more stable when she is awake. So, they are going to wean the Versed and have added Ativan as a PRN.

We had a scare with her illeostomy. The hospital ICU doctors were concerned the tissue was dying. GI specialists came to look at it and said it was fine and that it was just old, dried blood on top of the tissue and was nothing to worry about. What a load off my mind! I wanted to do a flip! If I could have, I would!

This will be a hard week for me, mentally, because I have to be home for 5 nights in a row. Since I have Karen (my 16 year old who is total care) I need to be here because my aunt is on vacation. Monty does not do care for her as a precaution since she is female. My only other caregiver for her is my aunt and since she is out of town...it is me. I haven't been away from Faith that long and it will be a huge challenge. I can go down and see her while the kids are at school, but need to be home in the evenings. It will be extremely difficult, but what can I do? It is what it is. Right? So, if I am a bit more crazy this week...you will know why.

DAY 46

2009-05-16T15:58:00.000-07:00

They tried to switch Faith over to the conventional vent, but were unsuccessful. They discussed the possibility of her needing a tracheostomy since she has been vent dependent for so long. Everyone was so hopeful she would have been weaned off the vent by now, but unfortunately that has not happened. It is discouraging because her heart and lungs were the organs that had been doing so well. If a tracheostomy is needed, they need to clear it with cardiology. I am not sure why, but something with her anatomy and making sure it is even a possibility. I just pray she turns the corner and gets off without intervention.

Other than that, things remain the same today. Still having ups and downs with our blood pressure and fluid retention. They are doing more bloodwork to see where we are at with liver function and insulin production. So, we'll see. Tomorrow is a new day.

DAY 45

2009-05-15T17:16:00.000-07:00

I cannot believe it has been 45 days. So many things have happened, so many emotions have been felt. And we still have a long, unknown road ahead of us. But, we have made it this far, so let's keep pushing on!

A lot of progress pulling off excess fluid and being able to maintain blood pressure while doing so. Infectious disease came in a few days ago and switched up some of her antibiotics and they seem to be working. She has not had a fever the past two days, her blood work has been improving and her color looks much better.

So, overall, Faith is doing pretty well and you can feel medical personnel having more hope for her. That helps a tremendous amount with our mental status, as well. And, boy, do we need it!!

DAY 44

2009-05-14T19:54:00.000-07:00

Steady progress being made today. Thank heavens!

DAY 43

2009-05-13T20:08:00.000-07:00

This is not an easy journey. As was a concern on the last post with her blood pressure, fluid retention did become a huge issue. Because of it, her lungs filled up with fluid and they were having a hard time ventilating her. A doctor came in and let us know that if she got to the highest settings on the Oscillator, there would be nothing more they could do. Monty came down and we kept vigil for the night...again. Faith did reach the top settings and then....she turned it around...again. What is this child doing to all of us????

So, today they have been able to pull off some fluid and maintain a decent blood pressure. The wound-vac was changed and that looked good. Her blood gases have been good and they have been able to wean down on the Oscillator settings. I am Praying for it to continue this way.

I don't even know how to explain the series of emotions we go through. I will say that Monty is doing better than I am right now. The first few weeks, I was handling things better and now he is. Guess that is a good partnership, right? So, I came home tonight to catch my breath and sleep. It doesn't matter how much sleep I get, I am always tired. I assume it is depression. I am hoping I feel better by Friday morning when my shift begins. And I better NOT get called in beforehand!!! Faith, you behave!

Happy Birthday wishes are due to my son Dominic. He turned 12 today! He got to spend the day with my cousin Nicole and her husband, John, who are visiting from New York. That was his birthday wish, so I let him play hookie from school and enjoy the day with them. They had a blast having a nice lunch and then going for go-cart rides. Dominic was even sweet enough to share the day with his sister, Jessica. He said he wanted more brother/sister time with her. Aawww. He is the sweetest kid. After that, we went to Game Stop and he picked out his birthday present and he ate at one of his Favorite places: Mel's Diner that has the BEST milkshakes! Good day for a good kid. Happy Birthday Dominic! I love you!!!!!!!!

DAY 42

2009-05-12T17:08:00.000-07:00

Faith's blood pressure has a mind of it's own and is therefore not allowing any progress to be made. They have gone up on both blood pressure medications and have had to go up on her oscillator settings. They have also given her a paralysis so she won't fight the oscillator. So, pretty much a depressing day. One of the doctors just feels Faith needs a few days of rest, which is probably true. She had a very hard week last week and she is always one that is slow to recover. Unfortunately, when she is given the rest we end up with other problems to contend with such as the fluid retention. Back to baby steps and taking one day at a time.

DAY 41

2009-05-11T10:39:00.000-07:00

Today they are going to try to wean Faith off the oscillator. Faith's co2 levels have been stable, so we will hopefully get her back on the regular vent by tonight or tomorrow. All of her labs have been good and she has been very alert over the past couple of days. Liver levels are dropping, which is a good thing, so it is looking like the stent is helping! We still have a lot to work on, like maintaining blood pressure levels, extubating, closing her stomach, amputation, etc....but, lets hope we can maintain a slow, but steady pace. It is Faith, however, so I guess we always have to be prepared for a U-turn, but I am really praying she will allow us to breathe easier from this point on.

I had a very nice mother's day, although it was the first one without my mom. However, I got to spend it with most of my favorite people: my dad, my aunt and uncle, all my kids (minus Faith), my cousin Nicole and her hubby AND 2 month old baby...Taylor Judith Reilly....who is ADORABLE and looks just like her daddy, and my best friend and her family. We had a nice time.

It made me reflect, though, on how lucky I was to have my mom and how I really do feel like we end up exactly where we are supposed to go. My mom couldn't have children, so God found a way to get me to her. I KNOW we were meant to be together. Just like Lacey, Andrew and Faith were meant to be mine.

Adoption is such a special gift. Whether a birth family decides to unselfishly give their child to someone who can provide better for them or the state decides on behalf of a child that they deserve better....adoption is all about love in some form.

People have asked me how I can love a child that is not mine. All I can think is....how could you not????? And, guess what, they ARE mine! They were meant to be mine they just had to get to me through another way.

I am so grateful for adoption because of the fact that I got to be raised by the greatest woman ever. She was compassionate, loving, smart, funny, selfless and had a zest for life beyond compare. It is a tribute to her and the love she gave me that I have adopted as well. Adoption is one of God's greatest gifts. HAPPY MOTHERS DAY JUDY MOON!!!!!!!

DAY 40

2009-05-10T08:42:00.000-07:00

Nothing new to report. So, I want everyone to have a VERY HAPPY MOTHERS DAY!!!!

Poem: Special Child

2009-05-09T19:18:00.000-07:00

You weren't like other children
and God was well aware
You'd need a caring family
with love enough to share.

And so He sent you to us
and much to our surprise
you haven't been a challenge
but a blessing in disguise.

Your winning smiles and laughter
the pleasures you impart
far outweigh your special needs
and melt the coldest heart.

We're proud that we've been chosen
to help you learn and grow
the joy that you have brought us
is more than you can know.

A precious gift from Heaven
a treasure from above
a child whose taught us many things
but most of all - "Real Love".

(author: Sharon Harris)

DAY 39

2009-05-09T08:39:00.001-07:00

Unfortunately our nice, stable evening did not last. I can't believe the ups and downs of this! We hardly get a step forward before she takes 5 back. Why????

Faith's lungs have some blood in them and are acting stiff. Her CO2 levels are extremely high. She got put back on the Oscillator, which is discouraging. She is on two blood pressure medications, one of which is very hard on her GI tract. Her fluid retention is alarming. She is positive 2 liters. Needless to say, I am very nervous.

However, she has pulled through this situation before. We shall see if she can do it again.

DAY 38

2009-05-08T19:57:00.000-07:00

Faith has been doing well today. She did go down to OR to have her wound-vac changed. They did it as a precautionary measure because of surgery the other day. They flushed around the bowels and cleaned it all up before replacing the wound-vac. She tolerated it very well. Her bowels are fairly inflammed from all the times they have been moved around and traumatized, but her new stoma site for her ostomy looks good.

She seems pretty comfortable and numbers are good post OR visit. Hopefully it continues through the night! Write more tomorrow. Have a nice evening.

DAY 37

2009-05-07T08:32:00.000-07:00

Faith is running a fever of 103 and her heart rate is elevated to 195. I suppose it is expected for something like this to happen after such an extensive surgery. Disrupting the bowels creates a lot of bacteria to be released. In fact, they did end up taking out some of the bowel that was damaged and I forgot to post that part yesterday. But...still... I can't help but be an absolute nervous wreck. My anxiety is worse because I am at home. It is extremely difficult to be torn between two places and not know where the right place to be is. My kids at home need me and I have responsibilities to be taken care of here too. In a situation like this, I guess there is no good answer. I'm going to try to get some things done here (like pay bills) and I will call Monty and see what is happening afterwards and make a choice at that point. Maybe luck will be in our favor and they will have the fever under control by then. I'll let you know.

UPDATE: Fever is down to 100.4 and heart rate is down to 160. So, improvement from this morning. (sigh of relief). I think I gained 10 pounds just in one day at home eating for comfort and out of nervousness! To help you understand what it has been like in the PICU is that Nurses that have been working at the hospital for 20 years, do not remember a time when things were this crazy with so many REALLY sick kids. Since we have been there, 5 children have passed away. That is a lot when we have only been there 37 days. When we watch things like that happen around you, it increases your own stress and concern. When you are not with your sick child...it increases your stress and concern. However, I did have a nice day with the kids at home and am grateful for the time with them. They, too, are extremely strong...just like Faith. I have so much admiration for all of them. I am a very proud mommy.

DAY 36

2009-05-06T12:25:00.000-07:00

Faith is back in the operating room. Her wound-vac has continued to leak and an order is present that smells like dead tissue. They are going in to explore. Prayers, prayers. This feels like a make it or break it situation. I'll update when I am able. PRAY!

UPDATE: Faith is out of surgery and I am happy to report they actually found something this time! There was a hole in her Ileum, which is the final section of the small intestine. They repaired it and then created an ostomy for Faith. The ostomy consists of pulling part of her intestine through the abdominal wall. An ostomy bag will be used over the site and her bowel can be eliminated through that. It is something she can have long term. She did well during during surgery and we will see how the night goes. Hopefully uneventful.

I pray this is the answer to all of these gut issues that we have been having that have created so many problems. Only time will tell.

Obviously, I didn't get to go home today. I may leave late tonight if she seems stable or wait until the morning. We will see how things go. Monty would stay here. I miss the other kids so much and need to see their sweet faces.

*** Drew - so many people have commented how much they LOVE your beautiful picture to Faith! Thank you so much for it. Faith will be very happy to see it when she is awake enough to look at it.

DAY 35

2009-05-05T19:11:00.000-07:00

This place is starting to get to me. I am going home tomorrow and I think that is a good thing. Just so much stress and emotion is in here and it is hard not to take it on. I need a break and need to see the other kids to recharge.

Faith is starting to look like a marshmallow again. They haven't been able to pull off excess fluid without it affecting her blood pressure. She also had fluid that was pouring out of her wound-vac and they aren't sure if it is bile or old blood. They are assuming it is old blood. So, we are still dealing with this bleed coming from somewhere that keeps creating these set-backs. Honestly, it is hard to stay positive with these things happening and with the atmosphere in here. There were 4 attendings here today and when the fluid was coming out of the wound-vac and her blood pressure was dropping, it was hard to get anyone because they were all busy with other patients. I thought I was going to lose it. (I actually did a little)

I am hoping tomorrow is a better day for Faith. I hope they can start pulling off fluid so it doesn't compromise her lungs. I hope this bleed will go away forever. I am watching people lose their children and it is scaring the heck out of me. I don't know how these doctors and nurses do it. Something positive needs to happen. I pray that Faith can be that miracle that makes all this worth it.

DAY 33 and 34

2009-05-04T08:51:00.000-07:00

Faith behaved herself on Sunday and now it is Monday. I am soooooo nervous!!!! The procedure is scheduled for 1:30. Today is my birthday and my only birthday wish is for this to be successful. That would be the best present I could ever get! I will post later when the procedure is complete. Keep Faith.

UPDATE: Faith did very well with the procedure. They were able to use the ERCP to put a stent in! My birthday wish came true. Now it is just a waiting game to see if the bile starts to drain and allows her liver to function more effectively. We will know this through blood tests.

Another thing they saw with the ultrasound is this pocket that comes out of her intestines that they do not know what it is. Of course Faith always has to throw some kind of curveball. She wouldn't be Faith if she didn't do that! They are wondering if this is where our source of bleeds have been coming from. They want Dr. Marr to look at it and see what he thinks should be done. She also has some dead intestinal wall tissue from having low blood pressure that they need to look at.

But, she looks good right now and is stable. Dr. Raff said this was going to be a marathon and I should be prepared. I told him that Faith has been preparing me for this for the last 5 years. I've got my running shoes on!!!

I want to give a big THANK YOU to my dad and aunt for allowing both Monty and I to be here today and tomorrow. We were both so nervous that neither one of us could stay away. They have been wonderful this whole time with my other kids (and my best friend, Nancy) and deserve some recognition. Thank you and I love you!!!

DAY 32

2009-05-02T19:04:00.000-07:00

Faith has had a good day. The PICU is absolutely crazy right now with multiple kids on Ecmo and 4 rooms that need 2 nurses each, ours being one of them. So Faith needs to behave herself. I had a talk with her and told her that she has already had her turn getting all the attention and now she needs to be a good girl and allow the doctors time with other patients. So far, she seems to be listening. :) Knock on wood it continues!

DAY 31 - update

2009-05-01T13:22:00.000-07:00

For those of you that know hospital life - things constantly change. Faith is not an exception. So, after her primary physicians here in the ICU consulted with Dr. Marr, a pediatric GI surgeon, a new plan has been set.

Dr. Marr works here at UCD and also at Sutter Memorial so many of you may know him and how great he is. He has a friend that does ERCP on adults that has worked on some of Dr. Marr's pediatric patients, as well. They would like to work together to do an endoscopic ultrasound to look at Faith's ducts and see if they are completely blocked or not. This is a non-invasive procedure that will give us a plan of action. If their is a complete blockage, then we need to go to one of the options I spoke of earlier. If there is flow, but it is compressed, they can put a tube in through her nose into the area (called a nasobiliary tube) to drain some of the fluid or put an actual stent in to create an opening for fluid to flow through.

This is much less risky, even with the tissue of the pancreas and they feel confident they won't disturb that tissue. Of course, there is always risk but it is much less than the other two especially when it comes to bleeding issues.

So, I feel good about this...well, as good as I could in this situation. They think they can perform this on Monday if they can coordinate with anesthesia. I think this is a safer, smarter route to go under these circumstances. Hopefully, the area is not fully blocked and can be simply and safely opened up. This is what I will be praying for.

Today she will be going to Interventional Radiology for a G-J tube. She has a gastric tube, but that area is partially blocked and feeding has not been successful. By going into the small intestine, we can hopefully get her fed. She has had a G-J tube before and they can be a pain, but this is what she needs right now. This procedure does involve anesthesia, as well, but it is very low risk. The poor girl hasn't been fed for a month, so it is necessary! Wish us luck.

DAY 31

2009-05-01T07:54:00.000-07:00

I have barely had a chance to post about the meeting yesterday as Faith has been awake so much. But here is what the results are:

Faith's heart and lungs are working well. Our main issues are stomach, liver and kidneys. From the CT scan, they do see there is a block within the ducts that connect all of these organs. This is not allowing her to be fed through her stomach and is making bile excrete in her system, creating liver failure and the jaundice. It is only a miserable, downhill slope if something is not done.

So, the procedure I spoke of that that is done with the machine they do not have at this hospital is out of the picture. Dr. Haight spoke to numerous specialist at different hospitals and it cannot be done. The end of Faith's pancreas has some breakdown and if the scope were to hit it and break it apart, it would be fatal. Apparently it could not open up the ducts with a stent, like originally thought.

Our next option, and the one everyone would like to see happen, is having Interventional Radiology go in through her liver from the side of her abdomen and open up the ducts. The problem with this procedure is that Faith is extremely high risk and she could bleed to death by going through the liver. Because of this, Interventional Radiology may refuse to do it.

If they refuse, the next option is to ask Pediatric GI surgery to open her back up and try. They too may refuse since they have already opened her up 3 times. Doing the procedure through Interventional Radiology is a better choice because they can see better by using cat scan and xray going through the liver than the naked eye by Pediatric Surgery.

Both procedures have the risk of her bleeding to death. However, she already has this risk as she has shown us numerous times. Monty and I have decided that we would rather have her die from us trying to help her...than to not do anything at all. Not doing anything leads to death, as well, and not a pleasant one.

If someone agrees to help us and Faith were to make it through the surgery, it would give us hope that her organs can start to make a comeback. We could get her fed and things could start to heal. The primary thing that needs to heal is her abdomen. At this point, with all of our organ troubles, the open abdomen is not going to heal. Everyday that it is open, increases the risk of infection that can be fatal as well. She would still need her feet amputated at some point too. Bottom line is that even if the surgery is succesful, we would still have a long, scary road ahead of us.

We feel that Faith is worth taking the risk. She has shown us over and over how strong she is. We have to give her the chance. For us, we can't live with not doing anything and that is obviously something to be taken into account....what Monty and I could live with. We fully understand the risks, but there are no good options here. We would rather her go with us knowing that we tried everything we could to keep her here. That is what we can live with.

DAY 30

2009-04-30T07:14:00.001-07:00

This is insane....Faith looks really good today. All of her vitals are great, her color looks better, they were able to take off Epinephrine (that had been started again), and her eyes are open and she will squeeze your hand or close her eyes when asked. All I can say, is there is NO WAY they can talk me into pulling plugs. Everytime they give up on her, she shows us that they shouldn't. She is so strong and has such a will to survive. There is no doubt in my mind that she should be given the chance to continue her journey. She is not done. I am not done.

With that being said, here is where we are at:

The team of her physicians will be meeting at 3pm to discuss what they feel is the best plan for her. They want to all be on the same page with that.

We are supposed to go in with them at 4:00pm.

Dr. Haight, the GI specialist, does feel there is a blockage between her liver and her intestines based on her CT scan. The simplest procedure is the one I discussed yesterday, however the doctor that performs the procedure only comes the first 3 Wednesdays of the month. So, we would have to wait until Wednesday. He comes from UCSF and can bring the equipment. Otherwise, the only other hospitals that have the equipment available are UCSF or Stanford. I asked about a transfer and they were not sure she is stable enough. (But that was yesterday).

They may have to fix it surgically which is high risk, of course. However, her main problem right now is her liver. She is not a candidate for a transplant and there is no cure for a failed liver other than transplant. So, if we can try to get her liver functioning better by removing the blockage....I feel it is worth the risk. Your liver is what clots your blood, so by getting her liver functioning better, we could possibly stop these bleeds as well.

So, I am open to a transfer and/or surgery. Obviously, Faith continues to show her will to survive. I think we should give her that chance...even if these things come with high risk. I can't pull plugs. I just can't. I would much rather lose her trying to keep her than just giving up.

That is where we are at today in this insane journey of "keeping Faith". I will check back in after the meeting and let you all know what the plan will be.

Keep praying. Keep Faith.

DAY 29 - update

2009-04-29T11:40:00.000-07:00

The team met and no decisions have to be made today. Dr. Choy is not ready to give up yet, nor are we. A liver specialist is supposed to talk to us this afternoon and there is talk of another procedure to see if there is a block between her liver and pancreas. It is not common for children to have this, but it is a possibility and could possibly be what is making the liver have so much trouble. It is a non-invasive procedure, so they feel fairly safe in going ahead with it. I don't know when it will be scheduled for. I doubt today, but maybe tomorrow.

So, we have bought some time and can hold off going to "the room" for now. The music lady, Kathy, came by today and sang songs to Faith which Faith loved. She had her eyes open for all her favorite songs. It was beautiful.

We need more answers and more clarity before making any choices. I don't want her to suffer, I really don't, but I am not there yet and they are keeping her comfortable. We will see what the specialists have to say and go from there.

Thank you for all the prayers....they are desperately needed.
(By the way, Desiree, if you would like to come by with your pastor tonight, I would welcome it.)

DAY 29

2009-04-29T08:38:00.001-07:00

Faith made it back from the OR last night and once again, they could not find the bleed. They are saying her kidneys and liver are too damaged and this is not something she can recover from. They want us to make decisions and at some point today...we will be back in "the room". How do you make choices like this? She is still opening her eyes, she is still fighting....how do you give up on that? I don't want her to suffer. She deserves better, but I just don't know what to do. This is a horrible day.

DAY 28 - A Miracle needed

2009-04-28T15:09:00.000-07:00

Faith has another bleed. She is back in the OR. We are so sad and feel so helpless. She is strong, but how much can she endure? Please pray for her.

DAY 26

2009-04-26T18:03:00.000-07:00

Faith is having a good day (per report from Monty). Monty said she watched an entire episode of Max and Ruby! She was also a good patient...squeezing the hand of her nurse when asked to do so and opening or closing her eyes when asked. That is my good girl!!

They will be starting feeds today. An extremely small amount to start with at only 2 ml per hour. But, better to be safe as starting feeds can draw blood into the GI tract. That is where most of our troubles have surfaced so I am nervous even at only 2ml per hour!

They are also trying to wean down on vent settings. We can't seem to get down on the Nitric Oxide, but that can be given via nasal canula...so lets get off the vent so I can hear my baby's voice!

On the downside, Faith's liver function is failing a bit more. The doctors are not too concerned as they feel it was from the blood that surrounded the liver and the abdominal pressure she has had because of the bleed. She is quite yellow, however, so I hope they are correct.

Still no CT results. I guess that is a good thing?????

DAY 24 and 25

2009-04-25T09:05:00.000-07:00

Yesterday, the wound-vac was changed by the surgery team. They reported that the bowls looked pink and healthy and they did not see any active bleed. She does have a tear in her rectum, so they will be keeping her on antibiotics as a preventative measure and will not start her feeds for a few more days until it heals a bit.

The CT scan was not done yesterday, but will be done today. They did do an ultrasound of her neck and kidneys yesterday. Her kidneys are normal size and the neck did not show any blood clots. Woohoo! However, they don't understand why the neck is swollen and red and circulation to the arms is not adequate. The arms can look red and a bit purple at times.

Bloodwork still shows infection, although they can't find the source. Hopefully the CT will show something. Possibly pockets of fluid that are breeding bacteria that they can drain and culture. She will be having the CT later today, so I will come back and update once we have results.

9:00 pm: Sorry, but still no results from the CT. The Radiologist will read them and we will hopefully have a report tomorrow morning after rounds. Let you know then....

DAY 23

2009-04-23T15:20:00.000-07:00

First of all, I want to thank our anonymous gifter today! We are honored and touched by your generosity. Your gift came as a huge surprise and is greatly appreciated by our family during this hardship. Thank you doesn't seem enough....but THANK YOU....from all of us in the Duarte family.

As for Faith, she is still staying strong. She has opened her eyes for a few minutes at a time. It is always so wonderful to see her big, beautiful brown eyes looking at us. Makes my heart melt.

She is recovering faster from this bleed as she is almost back to the settings she was at prior to it. The doctor was just in and is pleased at her progress, however still has no plan for how to deal with her stomach. They believe the bloating is due to blood clots being in the abdomen. If so, it is time that will break those clots and allow them to be reabsorbed into the body. Surgery will be in here tomorrow to change her wound-vac and look at her intestines and will hopefully allow for a plan to be made. It is frustrating for them to not have answers and without answers...it is hard to know the right thing to do.

The other concern at the moment is a growing redness around her neck and upper chest area. The area is warm, so the concern is an infection. They don't feel she is stable enough to go down for a CT today, but are planning on one tomorrow to look at a possible cause for it. Obviously they would like to know what it is in order to treat it effectively.

Tomorrow will be a busy day, so I will wait until evening to post so that I can be armed with information (hopefully :) ). Have a great day.

DAY 23

2009-04-22T13:15:00.000-07:00

Faith has remained stable through the night and throughout the day. Her stomach still looks HUGE, but they believe the bleeding has stopped. There was concern yesterday that she had clotted in her IVC, but ultrasound today showed that is not the case. The IVC was being compressed by the abdominal pressure and was prohibiting adequate blood flow to the heart. Thank heavens!

We have good news amongst all of this craziness....our housing at Ronald McDonald will be able to continue. The only thing we have to do is change rooms on the 1st. What a relief to take something off of our stressload.

I will be back to the hospital tomorrow. Our schedule had to be tweaked a bit due to Monty's schedule. So, hopefully, the night will go well and I will be able to report progress tomorrow.

As always, thanks for your prayers and well wishes.

DAY 22

2009-04-21T21:07:00.001-07:00

Well, unfortunately the bleeding started up again and Faith's abdominal area continued to increase. Her vitals started dropping and she became very unstable and things got crazy. Flashbacks kept coming at me of the horrors of the first week.

Faith was brought back down to surgery after much discussion. Once again, they did not find the source of the bleed. What they ended up doing is taking the piece of artificial skin out to allow fluids to escape. The wound-vac was placed over the abdominal opening and fluid is draining at this point.

I am really nervous and scared, but trying to be as positive for her as I can. I know how strong she is and I have to remember that she has pulled through this before. However...prayers, prayers.

DAY 21

2009-04-20T17:46:00.000-07:00

The bleeding from last night has subsided, but her abdominal area is now quite enlarged. The Pediatric GI surgery team does not want to intervene at this time. They want to continue to wait it out and see if it is fluid that her body will reabsorb or leak out through her wound-vac. I hope that is the case, but I will be sick with worry until it is resolved. I am so scared of her bleeding again.

Intermittent Dialysis did not work. She was back to a marshmallow within 24 hours. She is back on continuous Dialysis for the time being and they may try again to wean her towards the end of the week.

The latest on her feet are that most of the foot seems to be dead tissue. She is not bothered by people touching them, so it does seem to be the case. We continue to wait to see how far up it will go. As it looks now, it is back to probably mid-shin level. Ortho. explained that they have to amputate far enough up to have healthy tissue at the end of the stump. So, we will continue to wait it out and see.

Please think positive thoughts that these abdominal issues will be resolved quickly!!

DAY 20

2009-04-19T13:39:00.000-07:00

Faith is having some bleeding issues again. Blood was coming out of her wound-vac and so a surgeon was called to check it out. It was a scheduled day for the wound-vac change, anyways. They thought the bleeding might be coming from the stitches from where they placed the artificial skin. However, in true Faith fashion..it was not. They thought about taking her to the OR and doing exploritory surgery again, but have opted to wait it out through the night and see if her body will heal on its own. Aaaahhhhh!!! Monty and I are freaking out! Her vitals remain stable, though, and she has a great nurse today. Guess we just have to pray harder and hope she will heal without intervention. Keep positive thoughts going, right? Keep Faith.

I forgot to share a strange story. Faith has been going to preschool over the past couple of years. This last school year she has been at is Headstart and the staff and children made a get-well card for her. It is a beautiful, sweet card with everyone's picture on it that Faith will LOVE. When Monty went to pick it up, one of the teachers also gave him a plant. The plant was from a day that all the kids planted beans. Apparently, according to the teacher, all the other childrens plants died and Faith's was the only one that lived! Is that weird, or what? And, not only did the plant live...it flourished!!! They potted it in a pretty pot and we have it at home now. Hmmm....

Dominic and Jessica got to see Faith yesterday. Faith opened her eyes a few times for them, which made them very happy. I am hoping hearing her siblings voices gave her more strength for today. She loves them so much!!!!

I am back to the hospital tomorrow and will hopefully be able to report the bleeding has subsided and she is doing well!

DAY 19

2009-04-18T09:18:00.000-07:00

Faith has been running a slight fever and her white cells are elevated. Back to checking all sources for more infection. Preliminary blood work will be available tomorrow to know if she needs additional antibiotics.

The rest of her vitals and blood work are coming back acceptable and she was able to tolerate being off dialysis last night. We were so happy to get that Dialysis machine out of her room because it was HUGE. With it out, we were able to get one of the more comfortable chairs back. For those of you that have spent a lot of time in ICU, you know exactly what I mean!

I am back home now and Monty has started his two day shift. We have until the 30th to continue that way and then may have to figure something else out. Our stay at Ronald McDonald house ends on the 30th. When it ends, you have to go out for 7 days and then can reapply to get back in. So, for those 7 days we are trying to get into another housing system with UCD because the hotel near the hospital runs about $100 night. Expensive! We may end up just switching every 24 hours during that time. Then, we can come home and get a litte rest after 24 hours being bedside and that will enable us to get a shower. I don't know about you guys, but I can handle not getting enough rest... but I can't stand not getting a shower!!!! Yuk!

Other than that, things are moving along. Hopefully, the elevated white count is due to her body trying to respond to working harder and NOT more infection. Guess we will find out tomorrow. Love to all and a huge thank you to Hearts of Hope that has been bringing meals by the hospital every other day!!!

DAY 18

2009-04-17T13:26:00.000-07:00

Faith has been sleeping most of the day. Guess her body needs the rest from all the hard work it has been doing!

They are changing her wound-vac right now and after that they will be stopping dialysis. If she can tolerate it, they would like to only give her Dialysis for 3-4 hours every other day. Time to see if her kidneys will get to work on their own.

Other than that, no other changes for now.

DAY 17

2009-04-16T17:46:00.000-07:00

Faith looked great when I came in today! The fluid is coming off and she no longer looks like something you put in a smore. She let me sing songs to her and read her books. She even tried to turn the pages of the book! She points to the tv when she wants it on and points to the telephone when it rings. When one of her machines beep, she will point to her nurse. She is fighting off being suctioned, too. All of these are great signs that Faith is getting back to her old self. Woohoo!!!!!

DAY 16

2009-04-15T23:02:00.000-07:00

Faith ended up needed surgery instead of just a wound-vac change today. Her wound from the incision to the abdomen is not healing, so they put in an "artificial" piece of skin to close the gap. Basically, it is a piece of pigskin. Faith will love that one! The procedure took about 2 hours and she did well. I was a nervous wreck, but Faith did fine. That is all that matters.

Her Nitric Oxide levels, unfortunately, had to be turned back up. The gas is what helps expand her lungs. The gas helps the flow between heart, lungs and body and it just shows her body is not ready to take on the full load yet and that is ok. Sometimes I think Doctors try to do things too fast anyways. Just slow down a bit when the patient is in a good spot and leave them alone for awhile!

They decided not to stop Dialysis. Again, things were working well, why change it? The dialysis is finally being able to take off some of the fluid and they want to continue with that a bit longer. I definitely agree with that decision.

I did enjoy my time at home with the other kids. It was a bit hectic with gymnastics, LaCrosse, and my board meeting. But that is our "normal" life and it was time for me to be back in it for awhile.

*just want to say a special thank you to all who post on the blog. We love reading it and it will be a very special thing to keep forever for Faith!

DAY 15

2009-04-14T09:16:00.000-07:00

Today is my day to go home. I wouldn't have been able to do it a few days ago. Faith was just too unstable. But since Faith has had 3 fairly good days, I am pretty excited about seeing the other kids and will enjoy them 100%. I am going to have them all climb in bed with me, eat some popcorn and snuggle all night!

Faith is my little drugie today. She was being too fiesty and reactive, so now is on a continuous drip of Versed. It is better for her...I know...but I miss seeing her "real" personality shine through.

Faith met her goal on the Nitric Oxide of 5 and now we are going to hold at that level for awhile and work on lowering some of the Vent settings.

They were able to finally get fluid off last night. 400cc's and are hoping to do that again over the next 24 hours! If so, they may try to take her off dialysis tomorrow and see how it goes.

Her feet look incredible. I wish everyone could have seen what they looked like last week to see what they look like today. Last week, they were literally a dark purple, almost black, up to mid-shin. That is why initially that is where they thought they would have to amputate from. Today, they are only marbled with some purple. Most of the tissue is pink and lookes like it is healing. The toes still hold that dark purple look, so we'll have to see about those. But, I am really hopeful about the rest of it! It has been such a crazy thing to watch the transformation. Dr. Choy has only seen this once in his career and not to this extent. Really incredible.

Tomorrow they are going to be changing the wound-vac and attempting to stop dialysis. It will be a busy day for my baby. Once I get a report from Monty, I fill everyone in on how her day went.

Take care.

DAY 14

2009-04-13T13:04:00.000-07:00

Faith has been a fiesty little one this morning. She is not liking to be messed with and really does not enjoy all the tubing and bandages all over her body! Just a sign that she is getting back to her normal self. :)

The only medical change today is to go down on her Nitric Oxide. They want to wean her off over the next 4 days. One step closer to getting her off the ventilator and getting to hear her sweet voice.

That's it for today. Hope everyone had a nice Easter. (Monty and the kids had a great meal courtesy of Mr. Ken D. Such a generous man.)

DAY 13

2009-04-12T08:20:00.000-07:00

Faith did very well with her surgery. They didn't find anything significant, but I think it was a blessing in disguise. The wound vac they put over the site is helping things improve. Fluid is not draining all over her skin and entry sites. The nurses can actually sit down for awhile and chart instead of having to change soaked pads every 15-30 minutes!

They have been able to lower her vent settings and go down on more of her medications. Faith has been alert a lot more and trying to communicate. Dr. Raff suggested getting child life to make communication cards to help her out. He is such a great guy...going beyond his specialty which is the heart...to the entire well-being of his patient. We are blessed to have him!

They do not think infection is in the lungs and there has not been growth in her bloodwork regarding the sepsis. It scares me to even say anything like that, though, because I am afraid to jinx it. Bottom line, is that we are making great progress but still have to remember that she continues to remain in critical condition at this point in time. We can just pray that we continue on this path without any major setbacks.

Monty will be going home later today to start our shifting of 2 days on, 2 days off. Time to be there for the other kids, as well, and I know they will be so happy to see their daddy today. I am here at Ronald McDonald getting some laundry done before he leaves and then will be heading over to see my beautiful, strong, inspirational little girl.

I want everyone to enjoy their families on this Easter Day. Please try to concentrate on being fully engaged with the ones you love. HAPPY EASTER!

DAY 12

2009-04-11T11:48:00.000-07:00

Faith is in surgery again. The leaking is still out of control, they need to know the source of the air in the stomach and her intestines have started to come visibly come out of the first abdominal surgery incision. They are going in there to put them back inside and explore to hopefully find source of these problems. Of course, when we got here her blood pressure numbers, oxygen and all the rest of her numbers we looking very positive, so this will be a set-back. With the sepsis, this adds to all of her risks. Need lots of prayers today and for Faith to continue to be the strong little fighter she is.

I'll update you later when we know how things went. Obviously, things will be a bit crazy when they are complete, but I will try my best to fill you in as soon as I can.

DAY 11

2009-04-10T11:02:00.000-07:00

I am sitting in the waiting room right now because they are switching Faith over to a conventional vent...again...so we will see if she can tolerate this time. Cross your fingers she is strong enough now!

As you saw in the picture, she is much more alert today. It is wonderful to see her eyes open and have more clarity to them. However, when she is more alert, she starts pulling at all of her tubes and a sedative has to be given. Whatever it takes to help her heal.

She is leaking from every site there is and dressings are having to be changed every 1/2 hour. Things are leaking all over her lines and creating skin breakdown, which is another source for infection to enter. Faith is making these poor nurses work for their money!!! She has two nurses at all times and neither one get to sit down very often. I don't know how their poor feet do it for 12 hours straight! Like I have said before, everyone here is amazing.

They tried to start feeds via her G-Tube last night, but had some problems. There is a great amount of air in her stomach and they are not sure why. Surgery came in this morning to discuss it. Again, they are going to wait it out since she doesn't seem to be in distress from it which does not make it an emergency at this point. If she had a large hole in the bowels or somewhere else, we should have known by now. The drainage is thin and primarily clear so as long as it doesn't change, they would like to avoid opening her up. Us too!

I wanted to go home and see the other kids yesterday but a couple of them are sick so I was not able to. We can't take the risk of bringing something back to Faith. They were so understanding and seriously deserve awards for being the best siblings ever AND just being the greatest kids in general. We are so lucky to have them!!

DAY 10 (4-9-09)

2009-04-09T15:16:00.000-07:00

Today we have been on a slow and steady course. No progress, yet no setbacks and we are fine with that.

They are concerned about yeast in her lungs, but the cultures have not come back yet to let us know.

She is in a lot of pain and they are having a hard time controlling it. It is great that she is waking up and wanting to fight us, but we don't want her to be so uncomfortable.

As for her feet, a physician from Shriners burn unit came to look at it. She wants to wait it out to see how much damage is done. The outer tissue was removed and the right foot looks like it may be ok. The left foot has clots in the veins and probably won't fare so well. Only time will tell and they may not make a choice for a month or so as long as no infection sets in.

A mom from Georgia called and shared her story of her miracle daughter, Megan. She heard about Faith and wanted to make sure I heard the story of her inspiring daughter defeating all odds. It meant a lot for her to share her story and give us more hope. Thank you.

I will check in tomorrow.

FEET

2009-04-08T13:44:00.000-07:00

Just a quick note to let you know that now they are questioning amputating her feet. They don't know which way to go because of the concern of putting her through another surgery with her blood pressure already so low. So, once I have a definitive answer I will let everyone know. It makes me feel good to know that they really trying their best to make choices. They are such a great team and I have never once questioned Faith's care here. The UCD PICU team are the best!

WEDNESDAY

2009-04-08T11:02:00.000-07:00

Faith had a rough night. They took her off the Oscillator and put her on a regular vent. She did well at first, but then things started crashing so she is back on the Oscillator. She just wasn't ready.

The other part of the night was that the Vascular surgeon came in and Faith will be losing her feet. We cannot risk infection. Because of the poor circulation and damage, they will more than likely be amputating at about mid-shin down. It sounds awful but it may actually help because then her body doesn't have to try to heal her lower extremeties.

The good news is that Faith was completely opening her eyes this morning!!! She was trying to smile and trying to talk. She was raising her right hand for yes and squeezing our hand for no. It was very exciting!

Right now, she is sedated and has pain medication in her which they did before they messed with her feet. It has got to be very painful and they didn't want to do that to her. She will more than likely be sleeping for quite a few hours, but I am praying she will be opening her eyes again when she wakes up. It was wonderful!

I slept last night and Monty is sleeping right now. I know we have to start thinking about how we are going to manage this long term, but we haven't even had a chance! Dr. Raff said that if things continued going in this direction, that we should expect to be here until at least the end of May. This will be very challenging since we have so many children and extracurricular activities to manage. It is going to take some serious planning and organization. But, how do you complain when it could mean that we would be bringing Faith home?

Thanks to all for all the kind and encouraging words.

APPRECIATION

2009-04-07T15:38:00.000-07:00

I appreciate everyone's positive thoughts and prayers because guess what.....they are working!!!! In my darkest hour, a miracle was shown. At about 11:45pm, Faith's nurse checked her pupils and there was no response. Prior to that, Faith had done a bit of what looked like twitching. I asked how that was possible with no brain function and she said that she did not know.

About a half hour later, I was talking to to Faith and told her she was my pretty princess and she SMILED! From that point on, Faith has continued to smile on occasion and is moving her feet and her hands. Auntie Glenda and daddy, along with nurses and doctors got to witness these miracles. Faith is also opening her mouth on her own to be suctioned! After an hour or so of some responsiveness, they were able to take her completely off the epinepherin, her blood pressure went up and they were able to lower the levels on her pacemaker because she was overriding it!!

It was truley a miracle and the entire hospital staff had tears in their eyes and renewed hope on so many levels. Like I said, I appreciate everyone's prayers soooo much because they HAVE to be working!!!! I will never again question a higher power and this was life changing.

Of course, there are still many concerns so we still met at 11:00 to discuss where we go from this point. Obviously she is not going to be declared braindead and we will continue to proceed. There are serious concerns about her liver, kidneys and feet. They did an ultrsound on her liver today, but I haven't found out the results. Her kidneys are being supported by dialysis and she may not be able to go off dialysis. That is concerning because we don't have access on her upper body due to her cardiac anatomy. Her feet, like I have said before, are awful and they are worried about gangrene setting in. They are consulting with a Vascular surgeon and ortho to discuss a plan. More than likely, we will lose some part of the feet. She is septic , has internal yeast and possible other infections that are being cultured and that is the reason for isolation.

But, at least FINALLY some good news. So sorry everyone is being dragged along on this crazy ride, but thank you for sticking with us and continuing to give us strength. Lets keep our fingers crossed this is the turn we needed to continue on a stable path. I'm not sure how much more OUR hearts can take!

PRAYERS NEEDED!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-04-06T19:35:00.001-07:00

Neurology was called in today and they did a series of test and feel that Faith is brain dead and it just didn't show up on the CT. Supposedly sometimes brain injury doesn't show up on a CT for a few days. Monty and I had to go to a private room with a team of doctors and be told there is little to no hope. It was horrifying. I couldn't even look at them.

Luckily, Dr. Choy has not given up yet and still carries some hope along with us. We are also fortunate to have our favorite ICU doctor here tonight that has been the most positive out of everyone about her hope of recovery. They have asked for the tests to be repeated tomorrow. They will repeat the tests tomorrow at 11am and then will be bringing us back in to that stupid room to talk again.

Meanwhile, we are stuck here feeling sick and wondering how to get through the night. We know we have to be somewhat realistic, yet this is our little girl. It is so hard to know what is the right thing to do. The chaplin was called in...again...and said more prayers. We are saying prayers and are hoping tomorrow will bring more clarity.

Please, please, please pray extra hard for her tonight and tomorrow morning. She is just too special to lose.

MONDAY

2009-04-06T09:37:00.000-07:00

I'm sorry to have to say this, but we are asking for absolutely no visitors during the next few days. The ICU will actually turn visitors away at this time. Faith has a very elevated white count and they will be taking numerous blood draws to find the source of infection to effectively treat it. All precautions are being made and we are going in with scrubs and gloves. It will take a few days to get the true results back and until then....we have to be very careful about introducing any new germs into her room and in turn, to her.

Her blood work from last night did show yeast in the abdomen so they are already treating that. They are trying really hard to get her off the epi. because her feet are horrible. She has open multiple wounds on them and they are working on figuring out a way to isolate them and avoid infection entering through them (if it hasn't already).

Otherwise, her heart rate is stable as is her blood pressure. They are not able to remove more fluid from her right now because getting her off the epinepherine has become priority due to her feet. Once we wean her off that, we can concentrate on the fluid retention again. One step at a time.

Thank you for your understanding. Love you all and really enjoy the posts back to us!

SUNDAY

2009-04-05T17:12:00.000-07:00

Today has been a hard day emotionally. Honestly, I had a hard time getting out of bed and joining the fight today. I wanted to pull the covers over my head and pretend this wasn't happening. I am a pretty private person and I am tired of people watching my emotional roller coaster. I feel like crap, look like crap and am ready for this crap to be over. But....as the day has gone on, I have gotten better and realize I can't lose hope. If I lost hope then I am not helping Faith at all. We all need to try to be strong. Faith continues to be strong, so we need to be as well.

As far as Faith goes, we got our bubble burst a bit today. We were on such a high last night from the CT scan and this morning we were told it was grim again due to high acid levels. Also, her feet are so very purple and are cracking, blistering and draining fluid from them. However, if we lose the feet but keep Faith, I will be forever grateful. We can deal with that outcome.

It is 5:30pm right now and Faith has held at a stable level all day. That is all we can ask for at this moment. They were able to wean off one of her medications, wean off some of the oxygen and her blood gases have been looking good. That is the positives of the day and we will take all we can get.

It was wonderful to see the other kids and the Ronald McDonald house put on a nice Easter Egg hunt. I think seeing them is ultimately what helped my mood. They are such awesome kids!!!

I hope tomorrow's post will be a more positive one. Please keep up the prayers and positive thoughts. We still need them!

**By the way, this was not meant to get sympathy. It was simply sharing the true feelings of this ordeal. I am making this blog to share with everyone what is going on, but also as a chronical of the events both medically and emotionally for us to keep and look back on. We know we are going to have our good days and bad....that is the roller coaster ride that all of us with special needs kids unfortunately have to endure.

SATURDAY PM

2009-04-04T21:30:00.000-07:00

Today has been crazy busy. Our dialysis lines got clotted a few times, so she was off for quite a few hours and we lost some ground with her fluid retention. She is still a human marshmallow. They have it working now and we are crossing our fingers we don't continue to have problems. It is such a key component in getting her better.

Faith's lungs have also filled with fluid and we had to switch to a different kind of vent called an oscillator. It expands the lungs better and will work more effectively for her. However, she was fighting the machine so they had to give her a drug that acts as a paralysis to put her on it. At first that freaked me out, but the Dr. said it was a good thing because it will make her completely relax which would help out her organs in their recovery. That does make sense.

We also had a CT today. I got the feeling we went in because they were wondering if they should work so hard to keep Faith going. I was an emotional wreck and , wow, what a process to get her down to the CT with all her machines she is hooked up to! Eight people, including two doctors, went with her on this journey and it was quite the task. However, it was worth the effort! The CT scan showed that she does NOT have any significant brain damage. Hooray!!!!! There is a small bleed at the base of the skull, but not anything that needs to be drained. So, I think this has made the medical team here feel better about continuing her care and it sure made Monty and I feel like we have hope again!!! The neurologist feels like the lack of dialation of the pupils is due to the swelling and the pressure it is putting on the brain stem which controls our vitals. So, again, we are back to this swelling issue and how critical it is to bring it down.

A funny thing that happened today is that Faith lost a tooth! She lost one of her front teeth, which actually makes a perfect little gap for her vent tubing. I am sure it was knocked out by the vent and suctioning, but no harm was done so no big deal. Now, I just get to carry a little piece of her in my purse. :)

Tomorrow the other kids are coming down to see her and the Ronald McDonald house is putting on a Easter Egg hunt. So, we will take a little time away to spend with them over there. They should enjoy it and we will enjoy seeing them.

Take care and I'll fill you in tomorrow.

SATURDAY 4-4-09

2009-04-04T11:22:00.000-07:00

Today Faith's pupils are not responding to light so they are concerned there is swelling in her brain. Her breathing has become more rapid which could be an indication of swelling as well. An EEG has been ordered.

Dialysis is being tolerated, with the exception of a clot that resulted in having to change out all the lines. Usually heprin is used with dialysis, but they can't use it since Faith had all that bleeding and due to the fact her platelets are low. Unfortunately, this could happen often.

They are trying to get her off Epinephrine today because it is greatly affecting circulation to her extremeties. Both feet are extremely blue and there is concern of losing the feet.

TPN and lipids have been added to her daily routine to give her more calories and fat.

I wish there were more to say, but there is not. It is a waiting game and only time will let us know what we are truly dealing with here. Thank heavens she keeps holding on, though, and I keep hearing encouraging stories of others that have defeated all odds. They help.

I miss my other kids, but obviously Faith takes priority right now. They are amazing kids, though, and are holding up well. They know how to step it up when necessary. I love them so much!!!!! I can't wait for the day I can have my family back together again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

FRIDAY

2009-04-03T22:32:00.000-07:00

We had a very active day today. Basically, nothing that the medical team had been doing was working to reduce the swelling. Because of that and the fact that she is in renal and kidney failure, dialysis was started. Drainage tubes were also placed in the left lung and the abdomen to extract fluid and relieve pressure on her organs.

She has tolerated all of these things well and I am feeling like the dialysis is really what was needed to start turning things around. She is already looking pinker and not as cold on her extremeties. No changes in blood pressure, temp or other vitals.

I am feeling like we will have a good day tomorrow. Of course, I will let you all know.