Lets change plans again:

Dr. Hanley's office called just now to say they have an opening TOMORROW so they are changing her surgery date again. We are headed into the hospital now for her blood work, then to Eric's cousin's so they can have Elliot tonight, and then to the hospital at 6 am tomorrow! Pray pray pray!!!

A hard conversation

To be totally honest, Eric and I have never really talked with Elliot about death. So tonight when he was talking about dying and killing (some big kids in the game room were playing a war game) we sat down and talked about what dying meant. I started by asking if he knew what dying and killing was and he said that Jesus says not to kill. I smiled (and almost laughed) that that was his first response and that he knew enough to connect the dots between what the boys were saying today and what he's heard about the 10 commandments. And so started a conversation about the RMH house and how every family here has someone like sister. Someone who is not totally healthy and who has to see the doctors to help them get better. We talked about how we always hope and pray that surgeries go well but sometimes they don't. Sometimes things go wrong and and instead of coming home from the hospital to be with their families, they go to be with God instead. He wanted to know if we could see people with God and I had to say no. I let him know that when people get to be with Jesus that they are happy b/c time with Him is always good, but the families that are still here are sad b/c they don't get to be with their loved one. It was so hard to explain. I felt like I was walking this terrible line not wanting Elliot to be scared of doctors or hospitals or even God.

The RMH has somewhat of a family atmosphere b/c we all KNOW what each other are going through. We've all had close calls, hard times, difficult surgeries, celebrations in hospital gowns, thousands of pounds of cafeteria food, and more. We know when other kids are going though various procedures and support the parents through talking, hugging, praying, keeping our distance, visiting, etc. RMH recently had a family who lost a little girl. It was awful. You could feel the difference in the house. As we mourned with the family, I think we all secretly prayed that we would never know how that actually felt.

Elliot and I spoke then too, but it was more about the family than the little girl b/c he'd never met her since she'd always been in the hospital. Now we have many families that Elliot knows and are having surgeries and he is asking about them. Although we've talked about Arden's surgery coming up, he's starting to connect this with other people he knows. Elliot prayed tonight for a sweet little girl named Reagan Grace that is going for her heart surgery tomorrow. He prayed for her to be strong and for her mommie not to be sad. Amazing what he understands! We'd love for you to join us in prayer for Reagan and her family tonight and all day tomorrow. She is 3, just like Elliot, and was born with a congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's. She also has DiGeorge Syndrome which affects her immune system, her feeding, her walking, and her speech. Elliot loves her! It's so fun to watch the two of them together! She also loves Arden. It's so sweet to hear her little voice call out to see baby Arden and hear her voice get so much bigger as she plays in the play house with Elliot.

So all in all, tonight's conversations were good, but I think they wore me out. Please pray for Eric and I as we maneuver through all this with Elliot, pray for Elliot's understanding and the person this is shaping him to be, pray for Arden as she is getting more fussy (something to be expected as she gets closer to needing her surgery) and for her surgery coming up. And pray for Reagan as she goes through her 4th open heart surgery tomorrow at 7am. We are praying for healing for both Arden and Reagan - if your faith can take you there, we'd love for you to join us in this powerful request. Thanks for, well, everything. We'll keep you posted on Reagan tomorrow and on Arden's surgery this Friday and on Elliot's sweet understanding of it all.

BIG CHANGE

Arden's cath lab is today. Could be as early as 5pm tonight. Eric is keeping me updated. This sucks.

Cath Lab

Arden's doctors decided at morning rounds today that they are scheduling her cath lab for friday morning. She didn't gain any weight from yesterday so they are just being cautious and scheduling the lab now since a decline in weight gain is a warning sign of needing the next surgery. They are hoping she isn't emergantly taken to the lab and that she will gain some weight today so she makes it to Friday. In case the cath doesn't work or shows that they can't wait, her Glenn might be as early as next week - a month before they wanted it. Elliot and I will be traveling down to Arden this week to be there for Friday and through the weekend. Thankfully the H1N1 rule stipulating children under the age of 16 are not allowed in the hospital has been lifted so Elliot will get to come into Arden's room and be with her!

Again, thank you for your prayers and support. We are trying to come up with something that we can send to all of you as a mass thank you note since we've been overwhelmed with provisions - whether they were emotional, physical, or spiritual - because we want you ALL to know how appreciative we are. Please be patient with the timing of our thanks and forgiving of our lack of response to your emails/letters/cards/texts

/checks/cash/care packages/gift cards/messages/visits/prayers/clothes/food/presents/hugs/etc... we've received them all and are so grateful and humbled by your love. We promise we'll get something out there. For now, please know you've brought smiles, warm fuzzies, comfort, and strength to us. Thank you.

Things are not getting better

We had been told that Doctor's wanted Arden to stay close to the hospital because the nature of her current circulatory system is that she will just get more "blue". Since it took SO long for us to get down to the Bay last time they don't feel safe letting Arden go home. So Eric and I arranged for him to stay at the RMH with Arden and for me to head back to Redding with Elliot and to continue working so as to keep my position there. So Eric drove me back to Redding this morning after I held and kissed Arden as much as I could before 8am. We got here and packed up what Eric and Arden will need at the RMH and then drove to my mom's to pick up Elliot. He was THRILLED to see us! We played baseball with him for about an hour and then Eric had to take off back down to the Bay to be with Arden. When Elliot and I were packing up from Tutu's house, the hospital called me. Yesterday she was moved from CVICU (cardiovascular intensive care unit) to 3 West (an intermediate care unit). Well after we left, her sats (oxygen saturation levels) went back down and they had to give her more oxygen. Her team of doctors decided that it was better if she be moved back down to CVICU for closer monitoring. When her cardiologist called she said that right now they were just watching her but that she might be outgrowing her conduit. She said that Arden is most likely headed towards a cath lab in which they will look at her conduit and probably place a metallic stint in it to keep it open. This will hopefully allow her Glen (her next surgery) to not be moved up and stay in April. Right now her lungs are not mature enough to handle the Glen. That is why her surgery date was set for when she was about 3 1/3 months old. Historically babies do the best after the Glen when they are 3-5 months old. Arden turned 2 months today. My heart breaks that I'm not there with her. I felt literally nauseous after I got off the phone with the Doctor. But Eric is almost there now to be with her. Her doctor told me on the phone that now that she is back in the CVICU, she doesn't think she will be discharged anytime soon. She said not to hold her to it, but that she'll probably be in the hospital for about a month. So Elliot and I are holding up here waiting to hear more. I work Sunday -Wednesday and the I have the rest of the week off and Elliot and I will probably drive down. My boss has been AMAZING and is still working with me on my schedules so I can be in the Bay as much a possible. Right now we need to pray for Arden. Pray that her heart is healthy and can get oxygenated blood to the rest of her body efficiently. Pray that if she needs to go to the cath lab, it wouldn't be under emergent circumstances and that it would be at least weeks from now. Pray that her lungs mature and she won't have to have her Glen until they are more than ready for it. Pray that her veins don't clot off at her IV site so she doesn't have to keep getting poked. Pray for her team of doctors as they monitor her and make decisions about her health and future surgeries. Pray that she knows Eric is there and that she doesn't feel alone and that I stop crying when I think about not being there. We know she will be okay, but during these times, it is hard to smile. We SO appreciate all of your prayer and support. Giving Eric and/or I a call sometime with some encouragement would be amazing too. Again, we'll let you know more when we do. Grace, Pearcia and family

Praying for Arden

They think she might be outgrowing the conduit & they don't want to release her. She's too young/small for the next surgery so they aren't sure what they are going to do except to keep her here to monitor her. Last we heard they were going to talk to her surgeon and her cardiologist for suggestions. Please pray with us.

Long time coming

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