Saturday, Feb. 2nd was her first birthday party. I think she had such a great time with all the other kids that came, as well as our family and friends. We had such a great turn out, more than 100 people came. We're so fortunate to have wonderful family and friends. We're lucky that some of Zoe's NICU nurses have turned into friends, because they also came.
She didn't nap very long in the morning, roughly only 45 minutes long. She normally takes about 1.5-2 hours. But what kid actually sleeps the day of their birthday party? She was so tired throughout the party, and her cheeks began to get flushed. When she has rosy cheeks, its a given that she has a fever. I won't bore you with details of the hospital stay, but long story short, they couldn't figure out why she was having fevers of 103 and 104 degrees for 5 days. She had every test run and all they could say "its probably a virus". She was out of the NICU in March, and since July we've been Children's for 3-5 days the beginning of every month. The only month she hasn't had a stay was December. My heart breaks for her. She's older. She's more aware. She looks at you with her big blue eyes with terror of the "white coats". All the pokes and prods to determine if she's got an infection. Its just a never ending story. I hate Heterotaxy. I hate that her immune system is so low and we live at the hospital. And I'm extremely sad that she spent February 5th, her 1st birthday in the hospital.
We're trying to keep our lives as normal as possible for Zander, and our sanity. Thank goodness for my inlaws who always step up and watch Zander and/or relieve me at the hospital so I can go into work (I have no vacation time). I'm physically and emotionally drained. I cried my eyes out a few days ago. Life just isn't fair sometimes. I know we are going to go through these stays, we were told in advance due to her condition, but it really just wears on you. I miss my husband. We rarely get a chance to talk because one of us is always at the hospital. We can't take a vacation any time soon because I have to "bank" my vacation days until her immune system gets better. We don't get date nights because life is just busy on the weekends, or we're at the hospital. I don't even remember what "normal" is anymore.
She was released last night at 10pm. We're hoping she's home for good for a very long time. We need spring to come!
Some of her pro 1 year photos:
The day of her party
Her birthday spent in the hospital: 2/5/13
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