Today is the 8th day that we have held Kaitlyn's feedings. It's really hard to believe. She has lost a lot of weight in her belly, which I would think would make her feel more comfortable since her belly was so large and tight due to her enlarged liver and spleen. There is more room in there now which I would think would mean less pressure. Just my own thoughts though.
Kaitlyn's heart rate went up and is now a little lower. Her oxygen concentration is still pretty low but not as low as it was. This morning we couldn't get the pulse/ox machine to read on her toe. Stephanie, RN said that this could happen when her circulation gets less efficient and would result in a very weak, possibly unreadable pulse. We have it on her thumb now and it is working fine. It's currently reading is 84 O2 and 113 heart rate.
Yesterday we started giving her morphine more often (every 2 hours) and added Valium (diazepam) every 4 hours. She has become more and more unresponsive over the past few days. This morning we checked her pupils and they don't react at all with a pen light. She could possibly be in a coma. She's still breathing and "stable" for now.
We are going to cut back a little on her meds, as far as how often we are giving to her to see if makes any difference.
As a parent, you so desperately want more time with your child but at the same time if she is asleep, she is probably not feeling any pain and is probably half-way to heaven already. Who are we to change that? The end result will be the same no matter what we do. We just have to have faith and trust that God will guide us through this.
A wee bit of heaven
drifted down from above.
A handful of happiness
a heart full of love.
The mystery of life
so sacred and sweet,
The giver of joy
so deep and complete.
Precious and priceless,
so loveable too -
The world's sweetest miracle, Kaitlyn, is you.
Bless you all! Thanks for the update! I still think of her and your family and praying all the time. I can never type a comment without tears!! Those tears are for you Kaitlyn. Rest peaceful little one! Love you so much!
ReplyDeletePenny
Deanna, it sounds as though she is not in pain and is resting peacefully. I thank God for that. I cannot bear the thought of her suffering in pain. I love your little Kaitlyn and wish only the best for her. I wish the very same for you, Chip, Cole, and the rest of your family. So proud of you all, and I feel honored to call you friends. As always, prayer and love to you and yours. Kaitlyn has amassed quite an Army! She has made a HUGE difference in so many lives, I know she'll live on in my heart until I meet her in person up in Heaven. God Bless you, Sweet Kaitlyn...
ReplyDeletePaul--I too look forward to meeting her in Heaven!
DeleteYou are a wonderful mommy and the decisons you have had to make would probably break most. Yet, you have done so with complete faith and trust in God. Kaitlyn is on her way to meet Jesus where she will be when you meet her again. Stay strong Deanna and Chip. You have blessed so many of us-letting us love Kaitlyn too.
ReplyDeleteOh, what a pretty poem! Hang in there, you guys are doing such a great job! Love and peace to Kaitlyn and family!
ReplyDeleteYou are an amazing mommy and such wonderful caretakers. She is beautiful and so carefully cared for. Your words make it so easy to love her up to the heavens. I can't stop thinking of Kaitlyn and wish that this journey will be quick and painfree! xoxo
ReplyDeleteI love love the poem!!!
ReplyDeletePenny
The poem is so beautiful and very fitting. Kaitlyn and your family is so very often in my thoughts and prayers. My little girl (3) and I pray for Kaitlyn every night before she goes to bed. She asks about her "friend" Kaitlyn and if she is still sick. Kaitlyn is truly amazing and still a fighter. I pray for the continued peace for your family. The strength of your family and the faith of your family is so amazing and has touched so many. Continuing to pray,
ReplyDeleteGenia (SC)
Thank you for sharing your story daily and most importantly for sharing Kaitlyn with so many who adore her from afar! Your one comment today seemed to instill so much peace "she is halfway to heaven". I love all of her beautiful bows and all the stuffed animals she clings too. She looks so comfortable! I pray God wraps his arms around Kaitlyn and your family. My life has been touched by this sweet angel. Thank you!
ReplyDeleteExperience with elderly parents in a coma has taught us that they can still hear you...so be sure to keep talking to her and whispering in her ear how much you love her. :)
ReplyDeleteOur prayers for you all continue...
Thank you so much for the update! Kaitlyn is constantly in my thoughts and prayers. I love her so much! Such a strong little fighter, and that is a testament to the love she feels here on Earth from her amazing family. I am the mom of a disabled baby. Your strength and faith inspires me to be a better mom to her. Kaitlyn has touched my life in ways I can never thank her enough for. It is so good to hear she is at peace and not in pain. I too look forward to the day I can meet her in Heaven. Love Always, Amy Smith
ReplyDeleteI am so glad she is resting well. What a perfect angel she is. We love you Kaitlyn!!
ReplyDeleteThank you for humbeling me...You all are so strong and amazing...Kaitlyn is most fortunate to have you as a family. You are constantly in my heart and in my thoughts and prayers. I have a 6 month old and can't imagine going through what you all are. But it sounds to me like you have peace in your hearts and minds that she will fly away and forever be young and beautiful.
ReplyDeleteMaryann Shinn, Richmond VA
Thinking of you all daily, more then once. You are so very strong for Kaitlyn and I think she knows how loved and cared for she truly is.
ReplyDeleteTough choices have to be made and you are making them with grace...never doubt yourselves...you are doing what you feel is best for your beautiful daughter.
Hugs to all of you from here in Canada...
I am speechless.... You all are amazing. Cold chills when I hear you say she is halfway to Heaven. The poem is beautiful.
ReplyDeleteGod Bless you.
Amy Barrett, Gainesville, VA
As with everyday I just got done homeschooling for the day and had to check on Kaitlyn. Your family has become an everyday part of my family. We pray for continued strength and love for each of you. Last night my son prayed and asked his brother in heaven to help keep Kaitlyn pain free as possible and to be ready to play and sing with her when she arrives. From my family to yours...prayers and hugs and love. The Sherrin Family
ReplyDelete<3 Everyday I love this lil girl more and more, I admire you all for the strength and love that you all have especially Kaitlyn, this angel truly is a inspiration and has changed my point of view on life in so many ways. So sweet and inoccent but still a great impact on many. I cry for her often, may she be pain free and resting well. <3
ReplyDeleteThank you for the update. I check frequently...my heart stops a bit each time there is a new one. I am so thankful for the time that you all have with Kaitlyn and I pray that in her sleep she is comfortable, yet feels the love around her. She is, indeed, a sweet, sweet and strong miracle.
ReplyDeleteI also wanted to thank you for the update. I find myself looking for them and thinking about you guys all the time. To repeat what others have said, you and Chip continue to do such an amazing job listening to Kaitlyn and following her needs. I feel so honored, as a stranger, to be able to love Kaitlyn and your family from a distance and to share her story with my family and friends. I am the mother of 2 girls (1of which is just a few months younger than Kaitlyn) and I are marvel at your strength during this time. My girls "love Baby Kaitlyn" and we pray often for her comfort and for strength for you and Chip. Ever since I started reading your posts, shared by my friend Adam, I have felt so strongly to share your story and pray like never before. Kaitlyn has made such a difference in our lives and I've never even met her! Not often do people cross your path and open up new, raw emotions. Thank you for letting us be a part of your story. Love and prayers to all!
ReplyDeleteEmily
Harrisburg, NC
Also, the poem is beautiful!!
ReplyDeleteLove the poem and so very fitting! Keeping you all in prayer. xoxo
ReplyDeleteDenise
I have a daughter the same age as Kaitlyn,and as a mother I cant imagine what you and your family are going through.I have prayed for all of you everytime I think of Kaitlyn. May God continue to be with you and your sweet family during this difficult time.
ReplyDeleteYou words are felt and I feel so deeply for you all.
ReplyDeleteYour poem is so sweet and little Kaitlyn is SO lucky to have you as her family.
Heather from Baltimore
Such beautiful words. May your darling girl rest comfortably and peacefully, hearing your loving words and feeling your gentle touch. Your faith and strength has moved me to examine my own. Kaitlyn is blessed to have you, Chip and Cole. Praying without ceasing for all of you.
ReplyDeleteJenn TX
Half way to Heaven...what a wonderful thought! One day we all will be there and what a glorious day that will be! Kaitlyn is such a beautiful child and will be even more beautiful when she is an Angel! Your family is always in my thoughts and prayers. May God give you peace!
ReplyDeleteSpecial ..beautiful ...angel...prayers and thoughts go out to you and your beautiful daughter and family....
ReplyDeleteI've been following your blog for awhile now (thanks to a link provided by Kevin McCord, one of your neighbors on Facebook), but this is the first time I've commented. I pray for you guys every day. My family of 6 year old triplets, an 8 year old daughter and my husband have not only donated money to help your family and Kaitlyn, but an abundance of thoughts and prayers. We're trying to pay it forward as best as possible. You are remarkably strong and Heaven is going to be getting one beautiful angel.
ReplyDeleteWith all our love, thoughts and prayers, The Whelchels (Shannon, Trey, Isabella, Cooper, Teagan and Trinity)
One little thought...... Please continue to talk to her - I know you know this already, but was so glad when my mom was leaving to head to Heaven I talked her thru it the whole way. She even smiled. God Bless you all.
ReplyDeleteAmy Barrett
"What a day that will be, when my Jesus I will see. And I look upon His face, the one who saved me by His grace. When He takes me by the hand and leads me to that glorious land, What a day, glorious day, that will be."
ReplyDeleteDeanna and Chip,
ReplyDeleteI am taking the liberty to select certain lines from Hans Christian Andersen's poem, "A Dying Child." I pray that it brings you some comfort.
Mother, I'm so tired, I want to sleep now.
let me fall asleep and feel you near.
Please do't cry there now, you'll
promise, won't you?
On my face I felt your burning tear.
I can see the darling angel children
when I shut my sleepy eyes to rest.
Mother, look the angel's here beside
me!
Listen, too, how sweet the music grows.
See , his wings are both white and
lovely;
Surely it was God who gave him those.
Why do you take hold of me so tightly,
Put your cheek to mine the way you do?
I shall always be with you...
I'm so tired--my eyes they want to stay open---
Mother, look the angel's kissing me.
(I continue to check this site, and I pray that Kaitlyn continues to be pain free. God bless and comfort all of you.)
Deanna & Chip,
ReplyDeleteI read your posts every day and all I keep thinking is that God definitely chose you to be the parents of this special child because He knew that not only were you strong enough to help her through this journey but that you would know how to use this experience to reach out to so many other people. You both seem to know exactly what to say and you are an inspiration to all of us. I can't tell you how thankful I am, and I know I speak for everyone else who has been following, to you for sharing your precious Kaitlyn with us. You post the most beautiful pictures and your love for her and the joy she brings to you shows in every one of them, and you have the most beautiful way of expressing this to all of us. Thank you for keeping us updated...I check back throughout the day and am always thinking of Kaitlyn and your family. My heart is heavy for you, and at the same time, I am lifted up by your strong faith, and I know that if there is one certainty in all of this, it is that Kaitlyn feels every bit of the love you hold for her inside your hearts. I will continue to pray for her comfort and for peace for you. You are truly amazing and have helped so many by sharing Kaitlyn's story. May you feel all the prayers and love that are surrounding your family.
Your family has been such an inspiration, despite what most would consider a tragedy but no, you learned so much through such a small and innocent child. Today is an earthly loss but an unspeakable heavenly gain. This sweet child and family has touched so many. Remain strong, this isn't the end, yet only the beginning. I pray for peace and comfort to surround you all, as she's being surrounded with.
ReplyDeleteMy heart breaks so much for you and your amazing beautiful daughter. I have followed her story for some time and this is my first comment. I have a daughter a Lil younger. This has made me so thankful of my healthly baby girl and hold her more tightly then ever. You have taught me to let go of all the Lil things and just love my kids more and more and enjoy them. Every time I look and read about kaitlyn I just can't help but to cry. She is such an amazing Lil girl that has touched my heart!! I will pray for her to pass in peace soon. So there's no more pain. And for you to have strength when her time comes!! She is so lucky to be born to such amazing parents with so much love!! Love always and still praying from Connecticut!!!! Xoxox love you sweet beautiful kaitlyn
ReplyDeleteI am one of the many that have been following Kaitlyn's journey. A drop in the bucket of the people she has touched. Two years ago I delivered my son on this day at around 12:30. I know from this day forward I will always think of this beautiful sweet little girl and what she gave to the world. Being my sons birthday this date was destined to be a yearly milestone but now this little angel will be in our thoughts and share a place in our hearts. Thank you for letting her teach me to let go of the little things and spend the time soaking up the light that not just mine but all children release.
ReplyDelete