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| This morning (Friday) |
Kaitlyn's body is continuing to shut down. Her jaundice is worsening every day, signaling liver failure (according to her hematologist and the lab results) and her bowels don't seem to work at all unless we use suppositories, signaling that her GI system is slowing down, if not shutting down completely. She has a little bit of swelling in her feet and in certain areas of her belly but nothing that is too severe.
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| Visit from Aunt Jess (Thursday) |
We have been giving her lactulose twice a day to help her body get rid of ammonia and other toxins. We have also cut back on the amount of formula (powder) that she gets in her feedings. We don't know if she's processing any of it or not but we don't want to just stop feeding her. We also are giving her morphine more regularly so that she is comfortable. I don't know what a failing liver feels like but I'm sure it's not good.
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| Happy Early St. Patty's Day! |
We have been up most of the past few nights with Kaitlyn because she has been having fevers, low oxygen concentrations, restlessness, and heart rate increases- all common signs and symptoms of nearing end of life. It's not always like that but at night she seems to have trouble. Sometimes she seems perfectly "fine" (resting peacefully, good O2 sats and no fever, etc) and other times it's not. One thing that hasn't and won't go away is the increasing yellowing color of her skin and eyes due to the increasing levels of bilirubin in her system.
Over the past few days, each morning we look at her and are taken aback at how different she looks, especially in her eyes. It's a powerful reminder of how severe her disease has progressed and how close we are to the end of her journey.
It's such an odd feeling because we have prepared for this chapter in our lives many times before and we want to be normal and act normal for Kaitlyn's sake but it's so difficult when we know what lies ahead.
We continue to pray that Kaitlyn is pain-free and peaceful knowing how much we love her and how much God loves her. We haven't been given a time-frame but it seems to be coming quick. Her heart is strong though and we do not know what God's plan is for her, only he knows.
Here is a photo of Kaitlyn and her bunny. We have done pictures of her with her bunny since she was a newborn. Click here for the Facebook Album of all of her bunny pictures!
Because you all are so positive and filled with the holy spirit, it's easy to forget what lies ahead for Kaitlyn, for those of us who love her from afar and are inspired by your family...
ReplyDeleteI am in tears reading this. I will pray for more quality time and most of all, peace and pain-free days for Kaitlyn. I wish all of our prayers for miracles could come true, but Kaitlyn's life has been miraculous and one day, whether soon or far, she will get to be the angel she truly is. God bless you all.
Scarlett
I have been following your posts for a while. It makes my heart so heavy and tears flow every time I read. What an angel sent from God. You can add me to the list of people this sweet baby has touched, I will never forget her.
ReplyDeleteWe will all be family one day in our Fathers house. All of my Love to your sweet baby girl!
My thoughts and best wishes are with Kaitlyn and your family. I've been following your journey for some time and am incredibly inspired by the love and faith your family continues to show.
ReplyDeleteI, like many people I'm sure, wish I had some thing more to offer. I do offer my prayers and love. Holding you all close to my heart.
ReplyDeletePraise be to the God and Father of our Lord Jesus Christ. In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade - kept in heaven for you, Kaitlyn, who through faith are shielded by God's power until the coming of salvation that is ready to be revealed in the last time... (1 Peter 4-5)
ReplyDeletePraying earnestly for you all, weeping and clinging to the cross with you, a sister who does not know you, but loves you in Jesus. May the peace of Jesus surround you in a mighty way.
Praying for you and your precious Kaitlyn. May you feel the presence of God as He holds Kaitlyn's hand and yours.
ReplyDeleteShe is absolutely the most beautiful little girl I have ever seen and God is working through her each and every day. I am praying every moment for your family and for Kaitlyn, may you find peace and from one parent to another may you find as much comfort as is possible in a time like this.
ReplyDeleteI have bee following Kaitlyn' story for awhile now. Your words always touch my heart and I hope you know I am praying for Kaitlyn and the family every day and sometimes more. This week I have been afraid of looking at the update...it is going to hurt all of us that have been touched by Kaitlyn and your family. Please know that we love you all and will keep sending prayers and hugs coming for a long, long time. Your story has changed us all. Thank God for your little angel and for sharing her with us. What a wonderful, inspiring story of love and faith. Knowing Kaitlyn's story has made me love and cherrish my days more and praise God everyday for what he has done in my life. God bless you all.
ReplyDeleteBeautiful pictures! A very special girl and she has no idea how many people her life has touched!
ReplyDeleteI continue to think of you...
Sweet,sweet girl. I wish you all had a lifetime to spend with her and watch her grow. I pray that you find the strength to see her through to the end of her journey. She seems to be one very lucky girl to have been hand picked as your daughter. The one thing I feel in all of your posts is the incredible love and devotion you have for this darling child. Peace, peace to you all.
ReplyDeleteI have been following your blog for about 3 months now and am forever changed. If all my tears for your little baby girl could turn into wishes and miracles she would be well for sure. Sending endless prayers for peace and comfort during this very difficult time. Much love to Kaitlyn.
ReplyDeleteDeanna and Chip,
ReplyDeleteWe continue to pray for you all, everyday, many times a day. I ask God that He may surround your family with a feeling of peace like no other. I pray that Kaitlyn is pain free. Even though she may not be able to see you, I know she completely understands the love around her. Kaitlyn has completely changed my outlook on life. It's amazing what God can accomplish through one extraordinary kid. I look forward to the day when we're ALL together again in heaven with our Lord and Savior...what a great day that will be. In the meantime, know that we are holding you so very close in prayer.
Your beautiful girl - and your beautiful family - have touched my life and strengthened my faith. Thank you for sharing her with us.
ReplyDeleteWe have been reading your blog and keeping up with Kaitlyn's story...my daughter wanted me to tell you that she is envious of all Kaitlyn's pretty bows! :) We especially liked her selection today...and her gorgeous curls.
ReplyDeletePraying for peace still from our corner of IT. We have nothing but admiration for your faith and your strength.
Continuing to lift you in prayer. We are in awe of your strength and your faith. You are incredible parents! How lucky Kaitlyn is to have you for a family! With Love, The Russells
ReplyDeleteKaitlyn and your family are in my thoughts and prayers everyday. I pray for peace and comfort for all of you especially sweet Kaitlyn during this time.
ReplyDeleteMy heart just breaks as a mother myself.how you all must be feeling knowing what is ahead real soon for sweet little kaitlyn.I so so pray for owr previous lord totally fill your hearts and lives with the peace that only comes from owr lord.you have been a great inspration many many people across this big ole world.god bless you all .may the lord wrap his arms and continue to carry you threw it all..god bless you all..Cindy
ReplyDeleteI so wish I could take all of this away from you, from Kaitlyn. It just doesn't seem fair. I do know that your faith will persevere and carry you through this time. Kaitlyn is fulfilling her life's plan and will continue to make a huge impact on my life and my soul long after she has left this earthly world. Much love to you all~
ReplyDeleteI have been following your blog through a cousin and just want to say your an amazing family and I am sorry for what you are dealing with. I light candles on www.greatfulness.org for Kaitlyn and that she continues to be as comfortable possible and that your family be bless and wrapped in God's love. I will continue to pray for all of you. Karrie
ReplyDeleteI have been following your blog through Michelle and I am completely amazed at your strength. Your daughter is absolutely beautiful. Her journey as well as yours has changed my life. I can not begin to imagine what your family or Kaitlyn has gone through, but I can tell you this. Your daughter is a sweet angel that God's love shines through. Her strength as well as yours has been such an inspiration. I have cried many tears reading your posts and have my prayer group praying for Kaitlyn and for all of you to try and find some peace. May God's love continue to shine through all of you. May God bless your sweet little angel. Kaitlyn's life has been such a precious gift. I will continue to pray for all of you during this difficult time.
ReplyDeleteDeanna,
ReplyDeleteKaitlyn looks so content when you're snuggled next to her! I love you both and pray for a pain-free existence for Kaitlyn. I know she knows you will be ok when you let her go. Kiss her from a nana who only wishes I could be there with you to give you both a warm hug. God, hear our prayers.
Thinking of you and your daughter. I wish life didn't have to be so cruel sometime!!!
ReplyDeleteYour sweet baby girl looks so peaceful. I love you all so much and have shed so many tears. Please God wrap your arms around this angel and continue to give her mommy and daddy strength.
ReplyDeleteYour beautiful family is in my every prayer.
ReplyDeleteYour strength continues to touch so many. Kaitlyn is so beautiful and is so loved. I pray for comfort and peace for all of you.
ReplyDeleteThank you for sharing your beautiful family with us. My prayers have been with you all for weeks now, after running across your blog on a friends FB post. Your daughter is so beautiful, brave and very loved. You are a very inspiring family and there are many people who have been touched by your honesty and by your trust in God.
ReplyDeleteContinued prayers for Kaitlyn's comfort and for you all.
Thinking about you sweet Kaitlyn.. Hope you are having a peaceful night sleep, without pain. Praying for you sweet girl.. Hugs and love from VA...
ReplyDeleteur family has been in my prayers right along with my own family. as i mother of four, i seem to have no words, i just wish you guys peace. she is so beautiful! god bless you all. please give her a kiss from all of us that never met her but have fallen in love with her! god bless
ReplyDeleteI wish there was something we could all do. I just want to hug that sweet baby girl so tightly. Kaitlyn, you have changed my life and I will never be the same. You are so brave and so loved. You have touched more people in your life than I could ever hope to touch. There are many people out there who have a permanent place in their hearts for you princess. I will hug my kids tighter every day and think of you as I strive to be the best mother for my babies. You will never know me, but I know you and love you so dearly.
ReplyDeleteI have been following you and have been touched more then you will ever know. As a mom of 4 I really cant begin to wrap my mind around it all but, I will and DO cherish the time that I have with my kiddos. You may never meet or know me but Kaitlyn has touched my heart and I WILL NEVER forget HER or YALL!! Prayers and ♥ are sent to yall in huge amounts!! If love could make this better then one thing is for sure this would not even exist I think yall know that you are ALL very loved by MANY!!!
ReplyDeleteFrom my family to yours, sending lots of prayers and happy thoughts!
ReplyDeleteHeartfelt prayers to you for this special little girl - what can I say - I have a beautiful daughter too and she is well thank God and has given me so much joy in my life - I have been blessed and please God someone blesses you and your little girl
ReplyDeleteI am praying for your sweet girl. I pray that she feels God's arms wrapped around her so tightly. I pray for painless days and nights. I pray that y'all continue with the strength that God has given you during this time.
ReplyDeleteYour sweet daughter has touched my life like many others. I follow your blogs and it breaks my heart. I know that we will meet again some day and see her beautiful face. She will be pain free and running and jumping. Know that we all are praying for her and your family.
My husband and I are lifting your family daily in prayer. Words cannot express the love we have for your precious family. May the Lord God have mercy on you in your sweet girl's last days with you.
ReplyDelete