Before Chloe passed away, she had stopped breathing... I gave her kiss on her lips and when I looked back at her, she gave me a little smile. shortly after I couldn't feel her pulse, I knew she had went to heaven. My beautiful porcelain baby.
I have so much emotions I want to share.... I want to express my every thought and let the world know my way of grieving and how I think.. Maybe I should write a book.... not about EB ( but of course it would be mentioned and that would be awareness *smiles*) but about Chloe, and what she has done for me, and many others in 3 1/2 months, what she did more then most people do in a lifetime... I want to share Chloe.... and I want to write a book, thinking about her, and holding her hand and her big beautiful eyes! I want to tell the world about this little baby that changed so many life's!!!!!! And most of all... I think it will help me grieve.... I know the name of the book already, it would be called 'Big Eyes'..... her big eyes that were curious of the world around her, and how smart because she had many angles watching over her.
I hurt so badly... I dont even know what to type. I love you Chloe, Thank you for helping get close to Jesus, and knowing his love, Thank you Chloe for showing me what true love is. I love baby girl, Play with all the other butterflies, and when you see Taytums sister, Teagan, Tell her, her mommy loves her so much
I love my baby girl so much. Thank you everyone for all the support. Right now, we are leaving it all in Gods hands because if the Dr's can't do anything more, Its God who can heal her, or have her be in heaven with him. As much as it hurts, If she does go to heaven.... I have peace knowing she is with Jesus, and that she will be there praying for us, and she gives us more of a reason too live life right to make sure we make it to heaven. I love Chloe so much. I hurt each and everyday. I feel guilty to be away from her and not by her side sometimes, but then other times I have so much peace. When I held her today all I could do was listen to a friend sing and hold her close my face and cry my heart out. I love her... no words can describe just how much I love her.
I have many people tell me recently that no matter what happens don't let go of God... I will never do that. I just found him, I don't want to lose him, and I wont be able to make it past anything unless I continue to look up to him for guidance. I have never had so much love in my life.
My brother David and my friend Lori came down this morning to visit. Words cant even began to discribe how it felt to see my brother walk in there.... We never really talk because we never know what to say, so seeing him come in there and give me a hug, and to see the emotion, and love in eyes was more then words can discribe. and seeing my friend Lori was amazing also, Its been years since I have seen her. When I was in 8th grade, and started my first year of marching band, she was the only friend I had. She is a blessing Having them here is so amazing and I am so thankful.
I just wanted to give a little update on my sweet angel. We had another meeting small meeting today and we have decided to leave her here at the hospital so she can continue to get the care she needs. There were questions asked that we could not answer and that I cant even remember at this time.
I love her so much with all of my heart. The pain that me and Travis are feeling is just unbearable. My soul hurts.
First off I want to express to everyone who reads this blog, prays for Chloe and us, sent us good wishes, donations and items for Chloe, as well as everyone who has sent me a little message, or text, that I am honestly truly grateful for all the help and support it has gave us. I want to let everyone know that any donations that have been made, we have been saving and we are using that money to get us a car. We do not have a reliable vehicle to make it all the way to Lexington. All we have is my husbands truck and its only to get him to work and back. And the donations have also helped with gas to and from Lexington. We have been using my mother-in-laws vehicle to go back and forth. I just want to let everyone that the donations have been GREATLY appreciated because we really do need it with the help of getting a car to go see Chloe.
When I was in yearbook we did this thing at the end of the year and wrote a paper called "The Good, The Bad, and The Ugly" and from what I remember the paper what just that, the good the bad and the ugly of our opinion of the yearbook, and how the year went with making the yearbook and things like that so we knew what to improve on for the following year, and I think also it was away for some of us on staff to vent out a little bit, because we loved our yearbook adviser, so we were all bluntly honest. So Im going to to tell the good the bad and the Ugly of the past week because I haven't updated in a few days.
THE GOOD
We got back into the Ronald McDonald House, I received a phone call today from them and the Dr and social worker, worked to get us back in there and I am so thankful for that. I pray that the situation that we endured never happens again to any other family. It was stressful for EVERYONE involved I am sure of, So I am thankful that it was able to be resolved and that is now in the past, and all is forgave.
Also If I am not mistaken what the the nurse said over the phone, Chloe is down to 24% on her oxygen, I believe that is was the nurse said, but it was a little hard to hear so forgive me if I make a post saying different because I do not wish to confuse anyone.
My parents and one of my sisters came down over the weekend and that was such a blessing to have them here because it has been since June since I've seen my family, and I still have a brother and another Sister I haven't seen yet since June. Also along with my parents coming down, My friend Jessica came down for a couple days. It was so wonderful getting to see her because she was one of the only friends I really had before I left Indiana. I could trust in her, and talk to her when EVER I needed her, and I still feel the same way about her. What I love is that she doesn't hold grudge or isn't mad at me because I don't talk to her like I used to. I have times when I want to talk to her, but I don't know what to say. So getting to see her was refreshing for our friendship. With getting to see my parents and Jessica, My friend Debbie Also came down. She lives in West Virginia now but has family in Indiana and stopped to see us as she was heading back to W.V. from Indiana. It was amazing to see her. I haven't seen her in about 2 years. She was one of the first real friendships I ever had back when I was in middle school. I got to see her daughter also when she came to visit and that was so nice! her daughter Jasmyn as got so BIG since I last saw her. She is adorable. It was so nice getting to see Debbie and having her met Travis and Chloe also. I felt so blessed to have my family visit as well as 2 truly amazing friends come down for Chloe. Also want to Give Jessica a BIG THANK YOU for taking pictures of Chloe, They are beautiful!!!!!!! * Yesterdays Photography as soon I know of her website/facebook, I will post for more information*
Another good was being able to go to church last night. I got so much help from going, as well as peace in my heart. I feel that now I can go in and face those Dr's and nurses and practitioners with a smile on my face, and know that one way or another, Chloe WILL make it. I have faith that she will make it, If faith can move a mountainous, then faith can cure Chloe. I will say, Each and every day is a battle with everything going on. I have to regain my strength each and everyday. Find my peace each day. I have had countless people tell me that I am so strong and tell me that if they we dealing with this they couldn't handle it. When I get told that, all I can think is really? because I have days I feel so tired and weak. For anyone who may think that they are not as strong as me and my family, remember, the strength that I have was gave to me from God, the same God who can give you the same strength you need to help with your battles, as long as you pray for his help. And also the Bible says to cast your burdens upon him, So what ever may be troubling you, give it to Jesus, and I will assure you, He will give you peace. He gives me days filled with so much peace because I have gave my worries to the Lord and I have held onto my faith.
THE BAD
The bad my be pretty short because I think some of the stuff is really the Ugly. Ive Been sitting here for a while and cant think of any bad, so I'm going to move onto the ugle
THE UGLY
The Dr said that Cinci said that Chloe as one of the worst cases of EB that they have seen. It is n.ot her skin that is an issue, but her insides. THEY say that she has multiple organ failure. I have faith that she will come over this, I AM a believing woman. Chloe Isn't what has been so hard the past week as much as the Drs and the nurses. It has been a challenge to go in there and talk to them. It really has because I hear ALL negativity, and not even a word of something positive it seems like, and most of the negativity isn't even fact, as much as an...... opinion I could say, is being expressed. I had a nurse one day get in my face and say something that hurt me very deeply. I'm not going to mention names or what was said, but It honestly Shook me to the core of my soul and heart. And all I could think was, even why you are trying to be honest with someone, no matter what the situation, there are something that just shouldn't be said. I pray for that nurse to be more careful on the what they say and be more aware of their words and how it may affect me and my family. It also makes me pray that much more and harder that God moves for Chloe and Everyone can see her and be a witness to Gods miracle
TO CLARIFY
UK- University of Kentucky Hospital.
we did NOT go to Cinci, Cinci would not take her case.
When Chloe gets off the ventilator she will be coming home, that is the plan and what the hospital is planning.
Also a Special Thank you to:
The Butterfly Fund
The Jordan Light Foundation
The Ronald McDonald House
The EB Nurse in Cinci ;)
Mollie Walker
Jessica Howey
Christie Zink
Candace Jackson
and
Anyone who has made donations. I honestly do not know who has made a donation because Mollie has that organized for me. So thank you from the bottom of our hearts.
My parents have came down from Indiana to be with us here for a few days. Times are hard. They are are going to wean her off the vent so she will be able to come home with hospice. They are going to be doing less labs and sticks to her... We are honestly really confused on what exactly they are doing.... all we know is that we are going to get her off the vent and bring her home. But right now we are waiting for more family members to be here and we are all going to pray for her together. I Love Chloe so so much! They put the vent rate down from 40 to 20 and she is handling that pretty well.
Okay folks, as of 3:11pm we still do not know what is going on. We ran into her nurse practitioner and she doesn't even really know what is going on. We are all so confused and lost and just don't understand, but I will update as soon as I know for sure what is going on. I believe we are just waiting on to hear from Cinci.... Were told that Cinci accepted her and was ready for and that they wanted to take her there at 7am this morning, then last night they said they wanted to do a conference, so I dont know if they changed their mind or not.... One good thing about Cinci that I know of is, that because Chloe has/had the MRSA, she would have a room to her self!!! Love you and thank you every one for all the prayers and anyone who has made any donations. It means so so so much and is much needed. I love you all and I will try and keep everyone updates on Chloe!!! Shes been getting LOTS of kisses from everyone!
I dont want to type out whole lot because the meeting held a lot of information. So I will just tell a couple of the key things. She is a rare protein loss. The dr said she has only seen it a couple times in babies out of her 40 years of being a dr and those babies did not live. She also is inflamed in her GI tract and liver, and stomach. They are only giving Chloe a ten percent chance. If Cinci can't do anything... UK said they will make her comfortable.
I rebuke this. God can move for Chloe... If we have faith bigger then a mustered seed he can move for her... Its so hard to keep faith at times like this... But it is when we need to keep faith the most. God is always with her, no matter what... and me and Travis take great comfort in that.....
This is so so so hard.... please pray for Chloe... We are expecting nothing less but a miracle.
About the RMH, the hospital is investigating what happened. and to clarify, Chloe got MRSA right after she was 1 month old. It had been in her blood when it first appeared but they treated her. Who ever nurse told them that Chloe was MRSA positive broke major HIPPA violations, and I think that RMH broke some major rules also calling and inquiring about Chloe when they do not have permission. It just seems like I could call about any baby and find out information as long as I say I'm the RMH. I'm angry still. But... Apparently God as a better plan and we don't need the RMH
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