Sunday, February 19, 2012


 Chloe had so many little blisters on her over the weekend. She has tiny ones on her hand, arm, leg, and 2 on big toe. On her side one blister the skin rubbed off and the back of her head is just terrible. She is on the oxyhood again because she had a fever of 104! They did cultures and so far they have had no growth, and she is on antibiotics. She has had a crazy weekend. She had 2 blood transfusions yesterday and one this morning. Right now she isn't eating because she has been sick. They are talking about she may be anemic and that is it common in EB, and that some point she may need a supplement or even be transfusion dependent, but this is not fact yet, just ideas. 
     The IV she had for her head would not stick so they had to use tape on her. I hate that they did that, but, the nurse said she spent about an hour trying different things to make it stay but nothing would stick from all the vaseline. And the nurse is wonderful, and she really hated to do that. When I saw it, naturally I was furious. and when she came in I asked her what had happened for the tape being used to make sure it wasn't some random person who did it. And they nurse started to cry and said she didn't want to hurt Chloe. I told her it was okay and that Chloe is a strong baby and she will be okay and that sometimes the good out weights the bad. I hate that she was crying, but I can see that she cares, I was just very upset when I first saw it. And they couldn't put it in her feet because they were getting so tender from heal sticks and previous IV's 
     I was talking to her Nurse practitioners the other day also and they are concerned about her nutrition. They took her off the breast milk and placed her on Elecare, ( EleCare is designed to meet the nutritional needs of infants who cannot tolerate intact or hydrolyzed protein. The amino acid-based, hypoallergenic formula is clinically shown to support growth in infants when used as a primary source of nutrition.1 Plus, EleCare has DHA and ARA — nutrients found in breast milk that help support brain and eye development. from )After talking with them, they said its a possibility that she may need a Gtube sometime in her future 
     Over all she is doing so much better. I wish her skin looked a little better but since she has had the transfusions, she has color now. Before she was so pale and didnt turn very red, and her lips were a very light pink and now they are red and so kissable! And she read rosy cheeks!!!!
     Sorry for not posting anything over the weekend, My husband was here friday night and will be here untill tomorrow afternoon so I have been spending lots of time with him. We usually only get to see each other once or twice during a week because I am here at the hospital and staying at the Ronald Mcdonald house and he is back in our home town working. He is wonderful. Just seems like when ever he is here Chloe gets sick *smiles*    
     Love you all!!!!


  1. Oh, Megan...nice talking to you tonight. I am just in love with little Chloe and I think of you all day. You know I am praying for you. Love, Mollie

  2. She is beautiful. We added her to our list of friends on our blog to be prayed for. Hope that's Ok.

    Barbara and AJ (