Cayman's Visitors Today

Saturday March 15
Cayman had a lot of visitors today. It was great!!:

• Mike's mom and dad
• my mom
• my two sisters (Stacey and Madison)
  
• my cousin Linda
• Our pastor and his wife (John & Barb)

I've been so out of it...not just while Cayman is in the hospital but even while I was pregnant with her. I just found out that somehow I missed adding my own mother-in-law's email to our updates we use to send out before I created Cayman's blog, so it was not until last week she found out about the blog from her sister-in-law. How terrible of me!! "I'm so sorry Sue!" And I have been living in her house since middle of December and it is so unlike me to make such a careless mistake and even not communicate well. Then, I promised my brother I would call him once Cayman was out of her Shunt surgery to let him know how it went. And I totally forgot!! The poor guy called Mike's phone way late in the day wondering why he hadn't heard anything yet. There is so much going on I don't know how to focus on it all. Even though it doesn't seem like there is much to do at a hospital but sit and a lot of waiting, I feel so busy. I'm pumping so when Cayman is ready to eat she won't have to be fed just formula. The breast milk will be a lot gentler and healthy for her stomach to digest, especially since she had surgery there. So I'm doing that every 2-4 hours, I gotta remember to eat, there's a lot of people we were always meeting with (doctors, lactation consultation, social worker, some lady about special equipment Cayman may need like a car seat, birth certificate lady, etc.) Finally things are just starting to calm down it seems. She's done with her two surgeries, she doesn't need hardly anymore tests. She may get some blood drawn to do another gene analysis. Since she has the IV and they can draw the blood through that we decided for them to test now. We were going to wait, but we don't later want them to prick her for blood when her IV is no longer in. Maybe they'll find a syndrome or something, but it really doesn't matter to us, unless it could help guide us in giving her the best care. But Cayman has what she has with or without a diagnosis summing it up. We just love our little girl and we're so proud of her...that's all we know! I was surprised, I didn't know how...*pause*...what's the word...easy?...no, that's not right....maybe less frightening it would be to deal with her anomalies after she was born than it was while I was pregnant with her. It's so much more comforting to be able to touch her and see her with my own eyes, than before all I had was her ultrasound pictures to look at and even though those were sweet, nothing comforts me better than the real thing! Yet because we're so in love with her and she's so sweet, it makes everything even more frightening because we want to keep her forever and hope that is God's plan too! How's that for contradicting myself? It's been so exhausting having so many tests, and so many more birth defects reported back to us. Thankfully none of the birth defects have been life threatening beyond the Hydrocephalus and her stomach/intestine issue, and now it's only the Hydrocephalus that poses the worse long term threat to her. We won't know how severe her brain injury is from the pressure of the fluid until she grows and shows signs of delay. They kept finding new things all the time, we were so afraid they would find something else that would require a surgery or tell us that she wouldn't live long, etc. We believe she can see and hear. Grandma Stamm (Mike's mom) bought her a pink bunny for her to have in her bed. When Mike would put it up in front of her and slowly bring it to a few inches from her face, her eyes would look at it and get bigger as the bunny got closer to her. She had this same reaction 3 times in a row, and then wouldn't do it anymore as if saying "ok Dad, that's getting old". I've watched her eyes follow Mike has he has walked around her bed. The first time I held her and started talking to her, she immediately turned her head and eyes toward me. It's been amazing that she has been able to voluntarily move her head with it being that large and heavy for her, but she's done so well with it. Whenever the top has been off her bed and she's open to the room, if there's a lot of people and noise in there, her vitals go up and the look on her face shows distress from the extra commotion. And that distress disappears when we put the top down so it's quiet inside her little cube. So these are very positive signs that we weren't sure if she would have because of her brain injuries. We're so proud of her! She is this amazing little person.

My little sister, Madison (3 yrs old), was so excited to see me. She has noticed we have not been around for awhile and has been asking for us. She hugged me so tight, and then stepped back and patted my belly and said "Cayman in there?". I told her "No, Cayman's back laying in a bed sleeping." Her response was "Oh, I wanna go see her" in a very whiny voice. She passed her little screen health test so she was able to go in and see Cayman. She was very quiet and star-gazed while in the NICU, and once we left she looked at me and said "I love Cayman!" It was a sweet moment for me.