In the last month we've had our share of ups and downs: Arden has gained more weight than the doctor's expected, and is eating like a pro. Although she went home with a feeding tube, we were able to take it out about a week after we got home. We went to the emergency room the day after we got home b/c our home O2 monitor showed her oxygen levels were too low, but when we got to the ER, her levels were fine - it turned out to be our monitor. She can already hold her head up and look around the room, she's got the most beautiful big eyes that just take everything in. We had to call 911 once (2/25 above) but she ended up working things out on her own and the med team just checked her out at the house and left. Elliot LOVES his sister and is quite protective of her. He always wants to hold her and touch her face - he's even changed her diaper a few times times! He's a great big brother! Most recently things took a turn for the scary. I'm writing you this from Stanford b/c yesterday her feet were blue and her oxygen levels were in the 60s and 50s (they are supposed to be between 75-85). When we got to our local emergency room we spent a lot of time teaching the doctors and nurses about Arden and letting them know is was OK for her O2 levels to be in the 70s - if we could get them there. Thankfully, a friend of ours works in the ER and she came over and got us a private room, gave me some food, and just believed us when we said something was wrong. Thank God for Angie! Through the course of the afternoon, Stanford was contacted and they felt strongly enough that things weren't right with Arden that they sent a team up to us to fly us back down to them. Eric drove down as soon as we heard this and I flew with Arden, arriving at Stanford after 1am this morning. We stayed at a motel and are now back at her bedside with surgical coats, masks and gloves until they rule out an air-born viral infection. They've taken a chest x-ray and an echo and we are waiting to hear the results. Her blood cultures for infection won't be back until tomorrow morning. She's still being given oxygen. I'm praying for answers. Having something this wrong happen while we are so far away and not knowing why isn't okay. Tentatively they said they are hoping she will be discharged in 72 hours. Since I came by fixed wing plane, I'm missing work tomorrow. I just went back last week. I'm praying they don't fire me for having such an unpredictable life. We planned on Eric traveling with Arden for her appts down here so I could continue to work, but obviously blue feet and the need for a flight took precedent. Sorry Laurie. We appreciate your prayers. We already had a weather free flight down here and got into the RMH tonight so we don't have to pay for another night at a motel - prayer works! Thanks! We'll write more when we know more.
Pearcia and Eric