Sunday, October 24, 2010

Detour to Heaven

It is with great pain and sorrow that I inform you of Grace's passing on Saturday morning. I know for many this will come as a surprise. Unfortunately for us, she started to decline on Thursday.

As shared before, Grace has had many struggles with breathing. On Thursday morning I was awoken by Holly saying that Gracie wasn't breathing. I jumped out of bed, went into her room, laid her down on the changing table and proceeded to give her mouth-to-mouth resuscitation. After a few breaths she started breathing on her own. We called the Hospice nurse who came out and saw her. She checked her lungs which were clear and her overall status seemed ok. The rest of the day was good with no further problem.

On Thursday evening, Gracie and I got in the tub for bath time. As I held her Holly helped wash her. She loves bath time and was enjoying it very much. Afterwards we dressed her and prepared for an out-of-town friend coming to visit. During the visit Gracie was very engaging and enjoying being held by a new friend. After about 30 minutes we laid her down on her play mat and we sat down for dinner. A few minutes later Holly wanted to get a little wedge to put under her so she would be more upright. When she lifted her up she started to choke and spit-up. Almost immediately her color started getting pale and blue. I rushed her into the nursery and put her down on the changing table to start mouth-to-mouth. She was not responding as well as she did earlier in the day.  I had Holly call 911 while I continued to work on her. I'd get a little breath every 5 or so seconds, but not much more. By the time the paramedics arrived, a few minutes later, I got her breathing, albeit faintly. They started hooking her up to monitors and checking her. We informed them of her code status and they called the hospital for further advice. We were told they don't normally transport hospice patients to the ER, but would if we wanted. Since the ER visit last week offered little help we didn't think it would be any different this time. And by now she was breathing well enough to let them go and care for her ourselves.

Holly and I changed her and put her on oxygen in her crib. She seemed to be breathing ok for a little while. After a few hours we could hear some moisture obstructing her airway. We suctioned her out but it still continued. It was at this time we decided to put her on her side. Almost immediately her breathing was clear and unobstructed. It was around this time she fell asleep and never really woke-up again.

Holly and I slept on the floor in her room that night. She slept all night with no incidents. We continued to feed her but cut the volume back considerably. We also only gave the essential medications. On Friday morning we called and requested a Chaplin to visit us and say a prayer for Grace. Later that day the Hospice nurse came back out to see her. She felt Grace's condition had deteriorated and prepared us for her end of life. As you can image this was very hard to hear. She stayed a couple of hours and helped us with some other things including doing a memory mold of her hand and foot. Our dear friend Jamie had given us the memory mold kit when Grace was first hospitalized. We never got around to completing the project. We thought we had time.

That evening Holly and I called our friends Russ and Audrey and asked them to help us. We also asked if they would like to come over and see Grace. Without hesitation they said yes and were on their way. Grace was not doing well. Even though she was breathing ok on her side and tolerating her feedings and meds, whenever we rolled her over for a couple minutes to change her diaper her breathing became obstructed. I think it was at this time it really began to set in with Holly and I her time was coming to an end. Even though we had each other, we were scared to be alone. So we asked them to stay over that night. We also called some other close friends to come over and be with us. They were all great. They did everything for us allowing Holly and I to stay with Grace.

On Friday night Holly and I slept in Grace's room. She did pretty good over night with only a little fussiness early in the morning. Holly fed her and stayed up with her. I got up shortly thereafter and we talked about her current condition. Holly noticed her breathing was more shallow and infrequent. Around 8:30 am Holly and I were trying to decide if we should feed her at 9 and if so how much. We were both sitting in chairs next to her crib so we could caress her and talk to her. I wrapped her right hand around my index finger and we were both looking at her. At 8:44 she squeezed my finger and the most beautiful smile we had ever seen came across her face. Her grip lightened and within seconds the color in her face began to fade. Holly and I looked at each other as if to say, did you just see that. It was the most beautiful thing I have ever seen in my life. We believe that Grace saw something so beautiful and peaceful enough to let her know it was okay to let go.  What that was, we will never know. What we do know is that she did this for us and it was the greatest gift. We were so grateful she went peacefully without any discomfort.

Because of her fragile state for the last 36 hours we didn't dare move or hold her. So after she passed I picked her up and placed her into Holly's arms so she could sit and hold her. We called our friends into her room and we all knelt in front of Holly with Grace and cried. It was such an emotional time for all of us. We were so grateful to have our close friends nearby and able to share this precious time with us.

Emotions ran high for several hours afterwards. The culmination was when I wrapped Gracie up in her blanket and we all walked outside to the funeral home's hearse. I gently laid her down on the gurney and held Holly tightly in my arms. As they slowly drove away our friends embraced us as we all cried helplessly. We felt so empty and sad at our loss. We lost our precious baby who was so innocent and pure and who brought so much love to others.

I know our loss pains us greatly. But we also have great solace in knowing we gave Gracie every ounce of our love. We took the best care of her we could. I know she felt our love as we felt hers. It will take us a long time to get over the pain of our loss. But we will never forget Gracie and all she has brought us.  Our Grace was truly amazing and we are going to do everything in our power to make sure the wonderful memories of Grace live on forever.


  1. My heart aches for u and your family. I cant even imagine what you guys are going through. Gracie is now dancing with Jesus and is snuggled up warm in his big arms!
    My thoughts and prayers are with you and your family....
    "Life is not measured by the number of breaths we take but by the moments that take out breath away" Dolly Parton

  2. Absolutely beautiful Brien. You & Holly are amazing parents. While I am thrilled for Gracie that she is now free to run & play & sing & do everything a child should be able to do, I want to scream for you "but her place is HERE with YOU." Know that she will forever live in our hearts, and looking down on us from above. I love you two so much, and I ache for you.

  3. I am Gale's daughter and have been following your story. My heart is aching for the loss of your sweet, beautiful Gracie. I didn't even know her, but my heart is heavy tonight. You will all be in my prayers.

  4. Amazing Grace Lyrics

    John Newton (1725-1807)
    Stanza 6 anon.

    Amazing Grace, how sweet the sound,
    That saved a wretch like me.
    I once was lost but now am found,
    Was blind, but now I see.

    T'was Grace that taught my heart to fear.
    And Grace, my fears relieved.
    How precious did that Grace appear
    The hour I first believed.

    Through many dangers, toils and snares
    I have already come;
    'Tis Grace that brought me safe thus far
    and Grace will lead me home.

    The Lord has promised good to me.
    His word my hope secures.
    He will my shield and portion be,
    As long as life endures.

    Yea, when this flesh and heart shall fail,
    And mortal life shall cease,
    I shall possess within the veil,
    A life of joy and peace.

    When we've been here ten thousand years
    Bright shining as the sun.
    We've no less days to sing God's praise
    Than when we've first begun.

    Amazing Grace, how sweet the sound,
    That saved a wretch like me.
    I once was lost but now am found,
    Was blind, but now I see.

    Love to you our little Amazing princess Grace, from your Aunt Audrey & Uncle Russ xoxoxoxo <3

  5. I don't know that it's possible for a friend of a friend of yours to make a comment on this, but please know that my heart goes out to all of you. Heaven received a new angel.

  6. I love you both! You're both amazing, wonderful, and loving parents. Gracie is blessed to have you. I hope it comforts you both to know she is now in heaven healthy and pain free playing in heaven. Holly and Brien, you will be in my thoughts and prayers. I wish I had been able to make it out there to see her and hold her, and to be with you both in the worst way. It comforts me to know that God has a plan and that everything happens for a reason when it comes to Gracie. She touched so many people lives and these memories will live in us forever. Love you...Patti

  7. Brien and Holly, you both are pillars of strength. God could not have chosen better parents for Gracie. You both are such an inspiration. I have been praying so hard for you all and will continue to pray everday. This post was the most beautiful thing I have ever read. Hugs and comfort to you Brien and Holly.

  8. I used to work with Andrea. I have been following Gracie's blog. My thoughts and prayers are with you. You and Holly are amazing parents. Gracie is safe in God's arms now. I know Gracie will live on forever.

  9. We have been following your story, through my sister PJ, Audrey and Mark. Please know our thoughts, and prayers are with you.

    I found this poem a few years ago, and it has helped a few other members of my family through a tough time. It was one of Pam's favorites also. I hope it might give you some comfort God Bless ~ Sandra Neider

    Not In Her Storm
    by Sauni

    "I see the clouds rolling in
    and oh how it looks like rain.
    And it is always I fight
    for the welcome change.

    When it rains it pours
    on this heart of mine
    So, I take the storms
    I feel to her each time.

    But I know she has lived
    under her own pouring rain.
    Yet under her water her heart
    still doesn't change.

    She can walk away
    from what hangs overhead
    And, not in her storm,
    are words left unsaid.

    Not in her storm
    have I ever felt alone
    Her storm ends, so I,
    may find my way home.

    It's for me that she
    pushes away her own rain
    So, that I may find comfort
    in calling her name.

    She lives in this world
    for the sake of another's heart.
    God, how she eases the miles
    when worlds apart.

    And she never wanders
    when your world falls through.
    Not ever in her storm
    would she do this to you.

    She has wings
    that I know not only I can see
    Cause only an angel
    could find strength to carry me.

    It's the way that
    the eyes can surely view
    How her heart's written so clearly
    in what an angel can do.

    Not in her storm
    is her work ever done
    And even in her storm
    she hands me the sun.

    When her world is dark -
    I always have light
    And now how I hold
    the new color of night.

    She takes then she gives
    to an unhappy face
    So that many can find
    an awesome place

    I have been able to
    love her more every day
    And with her hand in mine
    the clouds roll away.

    Not in any storm
    that I will ever live beneath
    Could ever change what I hold
    here inside of me.

    Not in any of her storms
    have I lost my angels touch.
    To that angel out there, I love her so much."

  10. Brien and Holly, You are amazing parents. My heart goes out to you. Please know you are in my thoughts and prayers.

  11. Brien and Holly,

    Our hearts, prayers and thoughts are with you--so, so much. Thank goodness for your little angel to spread so much awareness to this horrible disease. Thank you for sharing your precious baby with us. She will be in our hearts forever. Please take solace in knowing that you did everything you could to help her, you both are such good parents and she had so much love. She will always be with you.

    Much love,

    Melissa Eaton and family
    Rocklin, CA

  12. May God bless you during this beyond difficult time. You showed strength and courage beyond words. May you find even more strength knowing that beautiful Grace is in heaven with God and those whom have gone before you.
    With much love,
    Mark, Nikki, Mark Jr. and Paige McAdam

  13. Brien and Holly, I am a friend of your dad's and have been following Gracie's story. I just got back from a Presbyterian mission trip where we were building homes for homeless people in Mexico and sleeping at a orphanage in TJ. I had been out of touch via phone or email until this morning and was really saddened by the news the Gracie had passed. Something occured to me though, on our trip in Mexico the men would meet and a couple times we sang "Amazing Grace", well it made me think of Gracie and I wondered how she was doing. I just want you to have some comfort in the fact Gracie was loved obviously by a lot of people and my emails I received made me think how lucky she was to have you guys as her family as you were as lucky to have her. I was really touched by your posting about the knowing look she gave you and Holly near the end. I prefer to think she is in a better place and you will be reunited with her down the road and perhaps this is her begining.

  14. I found your blog through a mutual friend's post on facebook, and was touched by your story. I smiled and cried while reading about Gracie. She was such a beautiful little girl. As a new mom, my heart aches for you both. I just wanted to pass along my condolences for your loss.

    Suzy P.
    Orangevale, CA

  15. Brien and Holly you both are amazing people. Gracie is smiling down on you and the wonderful but short months she had with you. As I went through and re-read your blog I had tears rolling down my face. I am so sorry for your loss of your beautiful little girl but know that she is an angel in a great place with God watching down on you! My heart and prayers go out to you both at this very hard time! Know that you have a lot of people that care and love you both!

  16. I met you Holly at PJ's house, the day of her Baby Shower, I have also been following Gracie's story through Pj. I wanted to say that Gracie is the most Beautiful red haired Baby that I have ever seen, Gracie's smile looked like it could light up the room, I know I never got the chance to meet Gracie, but I feel like I knew Gracie through this blog. I know Gracie has touched so many lives and Gracie will be remembered always.
    My thoughts and Prayers go out to you and Brien, and you Family.

    Angel Duncan, Orangevale, California

  17. Holly & Brien,

    We are so blessed to have grown closer to you over the past several months. Gracie was such a bright, beautiful little star which illuminated our world. She was born to teach us how important it is to appreciate each and every day and make every moment count.

    You were blessed by being her parents as she was blessed to be your daughter. It is clear that Gracie belonged at home where she could be surrounded by the unconditional love of her family and friends.

    It was so special to have the chance to hold her. Gracie taught us patience, kindness, strength, love, hope and most of all grace.

    We consider you friends and members of our family and we love you so much. We know you will be reunited with Gracie again. It brought us so much comfort that Gracie experienced such happiness as her time came to go to heaven.We are deeply sorry for your loss and our sincere sympathy is with you and your entire family at this time and always.

    All our love, PJ, Mark & Audrey Decker

  18. Dear Holly and Brien, my thoughts and prayers are with you. Having lost my husband so recently, I have an glimpse of what it must feel like...but loosing such a precious heart aches for both of you. You are so blessed to have had those amazing last moments with her. I will continue to keep both of you in my prayers, Karen Mosher