Friday, February 10, 2012


     What a good, productive day! woke up bright and early and got to the hospital, got there and talked with the nurse and everyone, and decided to feed Chloe at 2pm! So around  10 when we got there, we ( me and my mom-in-law) gave Chloe and bath, and did her dressing change, she only had one small blister. OH yes before I forget, they did cultures of her fingernails so make sure they were not infected, and they were not. -anyways- Got her all clean and dressed, and it was around noon then, so we ran to the S.S. office to get things rolling to be able to get her disability income, so we got the ball rolling for that, then it was 2pm...
     Chloe got 5ml of mommy milk, starting off small. When I gave her the bottle, she sucked a little, then would gag. wait a little bit, suck, and gag on the milk. She didn't know at first that she needed to swallow the milk! so half got in her belly, half got spat out. When 5pm came around it was time to feed her again. She had the same amount, and i stuck the bottle in her mouth, she gagged just a little, realized that it was mommy milk, and sucked and swallowed and went to town with that bottle! BUT she forgot to breath! So near the end of her bottle we sat her up and patted on her and let her catch her breath! I called after 8 to see how her 8pm bottle went and the nurse said she did wonderful, Just needs to remember to breath! I think if she keeps up the good work with eating the bottle, she wont need a feeding tube and she will just have to work on remembering to breath! I am so proud of her! She is a fast learner! Just like her Daddy!
     She also got her 2month shots today! The nurse said she did really well with them and all Chloe did was cringe her face! She most get that from me because shots don't bother me to much, and when I used to give blood, I loved watching them put the needle in my arm. I know, weird. She probably has a tolerance for shots because of all the shots I had to get while pregnant also!
     I am so proud of Chloe, She amazes me! I praise the Lord for everything he has done for her! He has truly gave her miracle... The Dr's gave her no chance on doing well with her skin, and was telling us that they would probably not do her surgery, that she had blisters on her insides because she had small spots off blood in her poo diapers.  (even tho they didnt know if that was true) But you know what, her EB is mild, they DID her surgery, she had no blisters on her insides when they did her surgery, they said she wouldn't heal, and she is and has, and most of them thought that she was going to get worse, and shes only improving! I praise the Lord for everything he has done for Chloe,  He is STILL in the miracle business! We have to pray, and God will move in the things we need him to move in one way or another! Sometimes it may not be how we want it, but God knows whats best for us and he wouldn't give us trials if we couldn't handle it, he gives us only as much as we can handle. I went to Church tonight and it was so comforting and wonderful. I am so happy I went. I almost didn't because I wanted to be there for when Chloe ate at 8 but I needed to go to church and I am happy I did! I'm praying Chloe does good with eating because she could be home in just a couple weeks if does really good from here on out! And she is going to chunk up fast once she starts eating! I cant wait!
     I love Chloe! She is so amazing! It's amazing how one child, can change and impact so many lifes! Even I am guilty of this, a lot, if not all of us who read this blog sometimes don't realize just how lucky for the small things in our life. For our skin that we can pull and rub and scratch, without there being no trauma to our skin. There are so many different things from our skin to our hearts that we need to stop and take a moment to be grateful for, to be healthy!!!!! There are so many children with EB and other health problems that suffer from pain, disabilities, cancers, and other health problems each and every day and it is so sad... and the children who are dealing with though's things are some of the strongest people! Strength isn't physical, its emotional. That is how people deal with day to day events, is with emotional strength, from major to minor or from just being slightly annoyed to tragedies, emotional strength is what help us. And where does our strength and help come from? It comes from the Lord!!!!

Isaiah 41:10
10. Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness

5ml of mommy milk


 Someone loves her Mommy!


  1. Dear Megan: Thanks for the update. So happy that Chloe is starting to take a bottle. That is great news. She will be going home before you know it. Love the pictures, your precious daughter is such a cutie pie. Love the last one especially, mommy and baby, nothing finer. Keep the Faith. Love and Peace Leah and Tabby's Nana

  2. So glad she is eating! That is just wonderful! Love you little precious not to love those big beautiful eyes. Prayers for you little butterfly baby.