Bye bye blog world

Due to security and privacy, we will no longer by using the blog. :) Thank you.

Broken Family

I just got my family back together again and now we are split. Yesterday we had a scary episode with Lady that brought 911 to our home, took us to the local hospital, and ended up flying her back down to Stanford. Now Eric is down there with her while Elliot and I stay at home. She in now on NJ feeds but they are talking about a G tube. She won't stop throwing up and she ended up aspirating fluid into her lungs. Her sats dropped to the 60s and she is on high flow O2 at 8L.

I don't know what to say. Elliot is exaspirated that she is BACK at the hospital and he says he doesn't want her to be there b/c he doesn't want to leave home again. *break my heart!* We've lost our Medi-Cal b/c of timing and us being in the Bay (Arden is covered her first year no matter what, but Elliot and I can't get sick or break an arm!) Although Premier is making us money, with all the added expenses of constantly traveling down to the Bay in gas, food, rent, etc, I don't know what we are going to to. We've stalled WIC so many times I don't think they will renew us next time. My relationship with Eric is strained, to say the least. Elliot is acting out a lot to get ANY attention, with so much being spent on Sister. I'm so tired and pretty depressed. Please pray for each of us. We need it. Thanks

down side to free internet:

When using the internet at Stanford I can't log into my blog b/c apparently the content of blogs can't be monitored so it is considered "not child friendly" and therefore blocked. The internet at RMH is limited to when I can pick up the connection or when their internet room is open and I'm here. Hence the blog silence. I actually came here a few times and posted updates, only to be kicked off the site due to whatever with nothing saved... My frusteration at the lost time and energy just kept me away longer. Sorry!

To sum up June, it's been very hard. We've been dealing with Arden withdrawing from her meds, not eating, our family being separated once again, and again, and again, and more. Now, Eric and Elliot are home (it was Eric's father's day present to go home and get out of the RMH) and I am at the hospital with Lady. She is still there, but there is rumor of discharge the end of THIS WEEK! We don't know if it will be to RMH or home yet. I am praying for home, but I don't want to rush her recovery b/c I don't want her de-sating again and flown down here b/c we took her home too soon. Currently she isn't eating and being fed entirely by her NG tube. She'll take her pacifier and sucks on her fingers, but I believe she's associated eating with heart burn and puking and so she just doesn't. It will be something we will just have to push through. She is regulating her temp better, I'm praying the heat in Redding won't be too much for her!! We are getting discharged on a nebulizer for her, that is new, but will help her lungs.

Eric feels out of place at home since he's lived at RMH so long, Elliot has reached the end of his rope with our family not being together and cries more, and Lady and I are ready to get out of the hospital! Emotions rage from raw to jaded at this point, but the thought of discharge thrills me! I'll try to post again, but I don't know what access will look like. Will definitely write something when we get out, but I don't want to spend too much time here in case I kicked off again. :)

A new week

This week needs to be good, because I am leaving Thursday for a marathon of shows, and my heart won't be able to leave if Arden isn't doing good. Today we heard in morning rounds that her BUN and crit numbers are high (these are in relation to her kidneys.) She's been on so many diuretics for so long, stress on the kidneys isn't uncommon, but definitely not desired! As we speak, little Reagan is struggling with her kidneys with MUCH higher numbers that they were actually talking about dialysis! Pray neither of the girls get to that point!

I finally got the Dr's to pull out her OJ (the feeding tube running from her mouth to her intestins) b/c she would gag and then throw up. I wasn't too concerned about her throwing up b/c babies throw up - but it was getting to the point that it would upset her for at least a 1/2 hour while the nurses cleaned her and her bed up. She was using so much energy in the process that she wasn't gaining weight. Now she has only thrown up when the dr's increase the amount of food she is getting. She does good at 15mLs/hour but the full feeds of 27 and even just 20 make her throw up. She they've upped her calories from 24 cal/oz to 26. We'll see how she does.

She got both her central lines out which mean we can hold her, but she still has her drainage tube in which is severely irritating. So we've both held her, but she seems to do better when she is on her bed. Hold her moves her around which is good for her and gets more drainage out as well, but getting more drainage out keeps the tube in longer. This stinks b/c she is uncomfortable longer, but I tell myself that the fluid would be in her anyways, so this is just getting it out faster. I don't know if that is actually how it works, but it makes me feel better when I hold her.

My mom took Elliot yesterday so Eric and I could have some time with Lady together. Then I'll travel back to Redding for the shows on Thursday, back down here on Sunday or Monday for an event Eric and I have been asked to speak at, and back up to Redding for more shows and hopefully by the time the next weekend is up and my others shows are over, Eric will just get to bring Lady back up to Redding and Elliot and I won't have to travel back down.

Thank you for your continued prayer over health, timing, unity, finances, insurance, and whatever God is leading you to pray for. We'd love to hear what you hear back from Him on these matters and more! Thanks!

Radio Station Recording

Click the below link to hear the phone call when we won the Mercy Me Prize Pack! You'll hear us with the radio station, Renee's letter, and what Bart had to say to us. Amazing!
http://chirb.it/Bf18g4

Has it really only been four days?

I feel like it's been forever since I posted last, but it's just been four days - crazy! I checked the news today to make sure we weren't in the middle of world war 3, we aren't. Even if we were, I'm pretty sure we wouldn't know. I can't explain the bizarre vortex time becomes when your life is the RMH and LPCH.

I was taking a break from updates b/c the last few days have had so many changes I didn't want to just be confusing. We are used to the constant change (kinda) but we know it can be complicated to read about.

So in summary, Arden is extabated. Victory! However we continue to struggle with her right upper lung and any weening that is done to get her off the high flow nasal cannula is reversed. Today I heard we successfully weened two liters and she is only at 6 now. Victory! Sigh, okay, so unfortunately we also lost her one PIV and her Arterial Line. She now only has her two central lines that go directly to her heart. These are the lines preventing us from holding her. They want to take them out Monday, which means we can hold her then, but it will leave her with no access so they want to take her to Cath and put a PICC line in. They tried looking at the bedside but her veins are just too small and too deep... and going to cath usually meaning getting intabated. Defeat. Big big defeat. The Dr. said she would pass the word to the respiratory team to do all they can to "bag her" for the procedure instead of intabating her, but we'll see how it goes. If they have to do that, we can't hold her until she is re-extabated... and that took weeks last time. Dr. Wright told us the day that she couldn't estimate how long we would be here b/c it's all up to Arden, but she said no less than two weeks. I've been praying over getting home by June, so it was defeating to hear that as well. We still don't know what will happen between now and June 2 (something important will happen that day, I can feel it) so I continue in prayer.

A pulminologist came in to see Arden finally b/c our heart team felt she had developed some sort of lung disease, but she couldn't say anything conclusive. She wanted to run two tests that "might" help, both requiring intabation. I said no. I didn't want her back on the vent for "might". If she ends up getting intabated in cath, we'll probably do one them, but well see. Her lungs as of today looked okay, so we don't want to disturb anything if they are healing.

She's also struggled with fevers, but I think it's b/c nurses think she's cold and cover her up... she's a little heater though and covers make her sweat. So I always rip them off when I get to the hospital and any "fever" she had goes away. :)

So all in all: today we seem to be okay. Prayer requests: Arden's healing. Elliot's pent up energy. Eric's cabin fever. My job... did we tell you? I quit Gymboree. I was supposed to be back at work this last week and there was just no having that. So Eric and I decided to step out on faith. And of course, we've continued to be taken care of financially! Our landlord even offered last months rent free and the next two months at 1/2 off! Plus, the jewelry business has been great. I'm looking at it as my full time job now, so with renewed gusto, I'm calling people, booking shows, talking about the business, and selling some fabulous pieces of jewelry! Interested in the jewelry, a show, the business?... let me know! :)

Thanks for your support - once again. I keep wanting to write a huge thank you note to everyone, but we've been SO blessed by SO many people, I'm terrified I'll forget someone. I'll suck it up and do it soon. Until then, thanks.

OH! HOW COULD I FORGET! Speaking of getting blessed... did I mention that Eric and I won a radio contest?!?! Seriously! Renee entered for us and we won! We are still in shock! We won a complete music library of Eric's favorite band, along with a bunch of other great things from the band including a personal word of encouragement and prayer from the lead singer of the band! Eric and I were in tears! So amazing! So encouraging! God is SO creative in how he loves us!

Quotes from Elliot

First of all, I'd like to announce Arden's successful extabation! Arden once again teamed up with God and against all odds is impressing the doctors with her breathing! Can I get a Whoop! Whoop!

I just wanted to share a few comments from Elliot today. He is such a ray of sunshine (when he isn't be a toad!) that I thought I'd share the light!

Elliot: (Out of nowhere while we are driving) Mommie, I don't want to be nice.
Me: Why not?
Elliot: b/c I've been nice all year so I don't have to be nice anymore.
Me: Well, okay. But we still need to be nice. We should always be nice to people.
Elliot: No, all the weeks I was nice so I'm all done.

Elliot: I love you all the way to the future!

Me: Pick your shirt up, we don't leave our clothes in the middle of the floor.
Elliot: Well its dirty now b/c it's on the floor so I don't want to pick it up b/c it has germs now. You can get it Mommie so I don't get germs.

Elliot: Lord Jesus, thank you for God and for Jesus. And Jesus help me to listen and respect all the years. Amen

Elliot: Can I sit on sisters bed?
Me: Not yet buddy, there are still too many tubes. You will be able to really soon though.
Elliot: But I have to sit on the bed Mommie because sister loves me.

Eric: Are you excited to go to the baseball game?
Elliot: No, I already go to one of those.
Me: but you are going to see Kelly and Ethan there.
Elliot: But I already see them so I don't want to go.
Me: Well they will be wearing different clothes, and you are wearing different clothes. So this will be different.
Elliot: (LONG PAUSE while he blank face stares at me) Okay, then I'll go.

I love my Elliot Thomas! Just thought I'd share! :)

Last night and this morning

I'm just going to copy and past from facebook so I can hurry up and get to the hospital:

10pm last night:

testing testing one two three... Arden is now on CPAP. The vent to breath for her is off and will only turn back on if she doesn't breath on her own. She is being tested over the next hour to see how she tollerates the work before tomorrow's possible extabation. Praying for her to do well! Go God Go! Go Arden Go!

midnight:

According to her nurse: "Arden did very good" Yeah! For a whole hour she was breathing on her own and kept all her numbers where they wanted them. She might do another test in the morning around 8 the nurse guessed. The Dr's tonight seemed wary about extabating tomorrow morning but the day shift seemed more confident.... We'll see what they say when they get there tomorrow and reevaluate. :)

This morning:

She's just about to finish her second test now and is still doing very good. Our nurse is going to take a few more blood gases to see how her levels are doing and Dr's are thinking they will extabate before 12. She is off the fentanyl drip so she will be more alert and has started withdrawal meds. Could today be the day?

Keep up the prayers! Thanks so much!

Are you kidding me?!

So I'm listening to morning rounds today and they are summing where Arden is at and move on tot talking about the goals for the day and suddenly they talk about wanting to extabate her. Last we heard it would probably be sometime at the end of the week... and they are talking about weening her today and getting her extabated tomorrow morning! OMG! Seriously!? I'm so excited and kinda nervous and anxious and terrified at the same time. Getting extabated would be a huge step forward. Other steps forward are the drainage tubes that were removed today - one b/c it wasn't putting out anything and the other b/c the insertion site was, well, gross. :) So I'm praying that either the tube would have stopped draining today anyway or if there is still some fluid, the body reabsorbs it so they don't have to put in another drainage tube. I'm also praying for the drainage tube sites b/c they were all red and irritated and she still has one more tube in. So back to the breathing, she is being weened on her PEEP (basically the pressure support of the breaths) one every hour. She was at 8 today and they want her at 6 tonight so they can do a trial run of her breathing on her own around midnight. Our PEEP is around 5-6 so she is already at a low level, but the last time they tried all her numbers looked good but she just couldn't handle it. They are hoping with her sats better this time she will do better. Pray for a successful practice tonight and extabation tomorrow!

Reagan continues to hit bumps in the road. Not only was she diagnosed with H flu (not H1N1) a few days ago, she was diagnosed with another type of flu today. Check out http://reflectionsofreagan.blogspot.com/ for details. Her Daddy and Brother had to go back home today, so it's just her Mommie, Mimi, and PawPaw her with her. We know - a family split up is never fun. Be praying for each of them too please.

12 hours later

in today's rounds I found out Arden didn't do well with last night's attempts to ween her form the ventilator. Her upper right lung flooded a bit so they are now thinking she'll need more time and might extabate middle of next week. Her right foot is warmer, so that means better profusion and her EKGs are looking ok. Elliot is having a rough morning though, I think he's reaching the end of this rope with RMH and the hospital. :(

She is so strong!

Arden's surgery was moved until Thursday which gave her an extra day to recover from the cath and get more fluid out of her. She went in first thing in the morning on Thursday and did a great job. She stayed stable on the ventilator the entire time, and although they had an ECMO machine set up and ready for her (Dr's were REALLY worried about her) they never had to use it! Praise God! ECMO is NOT someplace we want to go! She got out of surgery and we were told it would be a while before they would think about extabation due to the health of her lungs. Dr. Hanley also commented that her heart looked great (all things considered) and that he thinks we need to be focusing on her lungs. They were not inflating and deflating with the ventilator as he would like. So although I am still praying for her heart, it is now doing more work than originally intended, we are all shifting our focus to her lungs. Dr. Wright said a pulminologist wasn't needed yet, that they would see how things settled out after surgery.

Well we are just over 24 hours out of surgery and she is excelling once again. They've already taken her off the NO and have reduced her oxygen to 40%. The machine is also only helping her with 14 breaths a minute and they are weening the pressure support tonight from 7 to 6 as well. The Fellow tonight said he thinks she might be on track to be extabated Sunday morning! What!!! We aren't holding onto any dates, but that is weeks faster than expected! Her lungs are still "wet" so we need them to dry out in prep for her to do all the breathing on her own. If they are too wet, they won't be able to inflate properly and they will flood and she will have to be reintebated. Dr's also noted that her EKG looks a bit different after the last surgery, so she is getting a new EKG every day to trend what is happening in her heart.

A.M.A.Z.I.N.G.! Elliot also got back today. He had a GREAT time with Yaya Shauna! He saw his first movie in the theater, panned for gold, played with their big puppy, ran and ran and ran, and ate lots of yummy food. :) Big thanks to Freddy and Nana for their support!

It's late, so I'm off to bed. Tonight while I was holding her hand, she squeezed it back. It was perfect. She's been off the paralyzing meds since last night so she's moved a bit and opens her eyes to look at you (I missed her eyes!), but to have her respond by grasping my hand when I moved was heart warming. Little by little she is coming back into her own. Soon, she's be smiling again. I can't wait!

Also, for those of you asking, I checked with Reagan's mom and she said it was fine if directed you to her blog. I've been writing about her mostly in emails b/c I didn't know if it was okay with her mom for me to post about her, but I've got the green light! She is a SWEET girl almost exactly Elliot's age that when through her fourth open heart surgery the day before Arden had her second. Elliot and Reagan had a great time playing with each other before she went in and she loves Arden. We have become close with their family and would love for you to partner with us in prayer over Miss Reagan as well. You can find details on her at: http://reflectionsofreagan.blogspot.com/

A prayer

Lord, I know you are hearing a multitude of voices for our little girl, and I thank you for being an interactive God that hears and reacts to our prayers! Hear me now as I cry out for my daughter. You know better than any the inner workings of her body because you are the one that knit her together. I first want to thank you for being at the beginning with her and waiting for us at the end. We have peace in the end result of all this, but I have to confess that the middle part stinks. I hate watching my daughter lying on a hospital bed, spread out b/c she is sedated, cold b/c she has poor oxygen saturation, and eyes gooped up b/c she is paralyzed and can't make her own tears to keep her eyes moist. I hate watching a nurse give her more sedation on top of her continual drips b/c her blood pressure has gone up for some reason. I hate holding her hand and her not being able to squeeze it back. And I hate not seeing joy in her eyes and a smile on her face. I hate it. And yet I somehow KNOW, just like I've KNOWN everything else about this pregnancy and last few months, that this will turn out okay. Thank you for speaking so clearly to me and getting me to a place where I can hear you so clearly as well! Just today, as I suffered through my worry, doubt, and anxiety, you reminded me of the truths you've spoken over her life and the promises you've given us regarding Arden. Thank you! I needed that today. I'm so tired. I feel like I need the encouragement from those around us and following our journey... and yet sometimes I'm grateful for an empty waiting room - so thanks for being here with us. You just reminded me of Romans 4:20-21 which I happen to love in the Message version: "He [Abraham] didn't tiptoe around God's promise asking cautiously skeptical questions. He plunged into the promise and came up strong, ready for God, sure that God would make good on what he had said." Thank you! I just want to publicly declare that I am not going to waiver in my faith/belief or ask cautiously skeptical questions - I have already jumped in and I am ready for You! Ready for you to make good on the promises you've spoken over her life. So as Arden rests tonight, inhabit her body and make it ready for whatever it is you have for her tomorrow. I continually pray for healing over her heart and lungs, and wait in your timing. I shout praises to you and send this out as an accolade of your faithfulness. We love you and are trusting you with our pain over this whole situation. In Jesus' name. Let it be so!!!

Please join me in praying over Arden for healing. She usually does not recover very fast from surgery, and the doctors are barely giving her 24 hours before the next. In today's cath they really only found good numbers associated with her heart pressures. Her Drs say her lungs are sick and in a healthy child, the lungs would be able to recover with a little time, but in Arden, it is more tricky. As Renee posted and Melissa emailed and Mom texted, it is a vicious circle of the lungs not being healthy b/c of poor blood flow and there is poor blood flow b/c her O2 sats are down and her O2 sats are down b/c her lungs are not healthy. So during tomorrow's open heart, Dr. Hanley will be adding a gortex shunt from her aorta to her pulmonary artery to increase the blood flow to the lungs. This will initially improve her O2 sats, but adding flow to sick lungs will actually increase the lungs recovery time. However this is the only step we have from here. Best case, recovery could be a few weeks. Worst case, a few months. Dr said we weren't looking at a heart transplant yet; we will have to see how Arden reacts to the surgery tomorrow before we know if that is in our future. She is continuing to lose her PIVs and only has one access now. I'm sure they'll put in more before surgery tomorrow, so pray for her veins to be open and primed for the needed PIVs or a possible PICC. So far we've only had problem with her O2 sats, we are praying we continue to not have problems with her heart rate or her blood pressure. Today she massively impressed the doctors with how well she did in the cath considering all her problems before (she actually came out of the cath with higher O2 sats then she did going in!), so we are praying the same over tomorrows planned surgery and her subsequent recovery.

As for Elliot: He had an appointment with the Child Life Specialist today and did great. She sat down with some medical dolls and equipment to roll play with Elliot about what was happening with Arden and he told her that his sister had surgery on her heart and placed the sensors in the right place, the O2 probe in the right place, some gauze and tape over her chest where her incision is, and a med line in her foot and hand. I was amazed as how much he knew with just the few times he's been into see her. He then proceeded to give LOTS of medicine through syringes through her mouth like we do at RMH. He's so smart and I was so blessed to watch him care for this doll. He tried a few times to drop the baby on purpose but we let him know he had to be gentle with her just like sister, so he picked her up (football style) and started to walk away. When I asked where he was going he said he was taking her home so she didn't have to be here anymore. I followed him a bit to realize he really wanted to walk down to the car and leave with the doll. He's just so sweet! The rest of the day Yaya Delia played with Elliot, Yaya Susan has him over night, and Yaya Shauna is taking him for the next few days. Thank you God for the Yayas!

As for me, I am still rather sick to my stomach and not hungry. I did eat a bit more tonight though - thanks Williams/Davis family! I am now off to bed to try and rest up for the days ahead. Eric is already asleep for his drive out to Sonora tomorrow. Forgive me if I don't pick up the phone or return texts or emails or whatnot. I can only go through the story so many times. But KNOW that with each voice mail and email and text and fb post that I get, I am encouraged by your words and humbled by your love. Thank you for being part of our community and sharing this burden with us. We love EACH of you.

How about some pictures!

Me trying to get a picture in the mirror. :)

Elliot's "crazy hair" after a shower :)

Arden after her bath - she LOVES the water!

Us getting ready to go eat. Don't mind the messy room :)

This is Arden the day of surgery at 5:45am! She is just so full of smiles!

Sleeping with Daddy before the Glenn

Meds right after surgery

Arden 24 hours out of surgery

Elliot at Tylor's little league game (gotta keep life going for him!)

I think it's just a bit too big. :) Daddy loved that he was so excited about baseball!

Elliot painting his hands for mother's day crafts at RMH

This is Elliot saying "ta-da!" at pouring all the dirt in the pot that overflowed a lot as you can see on the volunteer's face.

Pretty's from Elliot for mother's day

Oscillator and NO she is on after she coded

Arden as of 5/10, sedated, paralyzed, on lots of meds and on the oscillator. Poor girl!

My aunt Julie took us out to dinner for mother's day. So fun and yummy! thanks!

I will post more pictures as time passes, but I wanted to make sure to get SOME out there. Thanks for the prayers and support once again!

ARden is still critical

Although Arden's sats are still in the 80s and 70s, her sats in her head are in the 30s and she's desated a few times as well. Dr's aren't sure what is going. They say that she doesn't like anything that they are doing and probably just wants to go home. :) Well Amen sister, but we have to get you stable and healthy first! She is still on the oscillator and they need to get her off this. There is lots of talk on sending her to the cath lab to really look at the Glenn but there are also a lot of concerns about this as well. She is not yet stable (Dr said the majority of the patients that go to cath are sick and that is the purpose of the cath so although this is scary for us as parents, this is something as doctors they do all the time), in order to go to cath she has to be breathing ok on the ventilator for a few hours which means they have to ween her off the oscillator quicker than normal, she also was positive on her fluids yesterday instead of being negative like planned. This means she is taking in/on more fluids that she is draining/peeing out. So they've moved her to an aggressive diuretic schedule with a drip of lasix, a bolus of diurell every 6 hours and a one time dose of their "last resort" med. They also can't find the balance she needs of O2 and cO2. She does better when she is a bit acidosis (higher cO2) but if she gets too high, she starts to lose the desire to breath in. So please pray for a balance here, for her to lose fluid like crazy, and for her little body and will to hold everything together. Again I find myself in a strange place of trust and worry combined. My faith is strong, but my flesh is weak. Pray for us as well. Today a child life specialist will be stopping by to make an appointment to meet with Elliot to talk with him about everything going on with his sister. Prayer for his understanding and character is welcome as well. Thanks so much! Heading back to see my girl so Eric can be will Elliot and he can hopefully nap.

Happy Mother's Day

For Mother's Day I asked Arden to give me a drama-free day. She did a great job today. They took more chest x-rays (I swear that girl is going to be glowing by the time she is five) and said her lung looks much better! One of the cardiology fellows even did a little dance when he walked in and saw her sats today. I love that the doctors and nurses are so dedicated here that they dance when a patient does well. He sats today were in the 70s and 80s all day long. She is on an oscillator which has her breathing at over 100 breaths a minute, but this not only super oxygenates her lungs, it helps shake any junk in her lungs loose to be suctioned out too. They usually don't use this on Glenn babies, but Arden seems to excel with it. They are hoping to ween her from, transfer her back to the ventilator and then extabate... the timing on this is unknown though. Her last x-ray came back today saying that the upper right side of her lung is still not as open as they would like, so they will keep her on the oscillator until they are happy with the images. I am praying for her little body to recover as quickly as possible so she can get off the machines and meds!

Elliot gave me some wonderful crafts made at the RMH. A flower pot that he would paint a spot of color and then cover it with a sticker, some hand prints - one of which he wanted to be dirty so he put dirt in the paint, and a card with an abstract painting on the front. :) Us mom's swoon at things like this! :) So silly. I'll post some pictures tomorrow.

All in all, I think my mother's day was okay. Spent time with each of my children, ate BBQ at RMH, had a fun dinner with family (thanks Julie!), folded some laundry, cleaned poop off the floor, unclogged a toilet by reaching my hand in the bowl to pull out the paper towels Elliot put down there when he tried to clean the poop himself, and watched the Incredibles. I could think of lots of things that could have made today better, like Arden being out of the hospital, our family being at home, or spending time with friends playing games... but given the circumstances, I think today was pretty good. I love my family. Happy mother's day everyone!

Today was awful

Arden is back. Her O2 sats dropped to 9 today! It was awful. 2 hours of watching drs help keep her alive. Her upper right lung had collapesed and the rest was blocked with mucas. The got a lot of junk out of her lungs and her sats are now in the 80s! Praise the Lord! Thanks for the prayers! Keep them up, we've got a long way to go. Will write more after I get some sleep.

Where we sit

Arden's surgery went well. Before surgery Dr's knew of a leak on the right side of the heart between the atrium and the ventricle, but they said this usually repairs itself after the Glenn is put in place b/c the right side of the heart will no longer being doing all the work and is no longer "stretched out". They said they would watch the valve leek over the next few weeks to see if it heals on it's own or if they need to go repair it.

She came out of the OR on Thursday afternoon with her O2 saturation's in the 70's. Dr's said her levels until her next surgery (around the age of 3-5) will sit around the mid to high 70s. However, over the course of the last 24hrs, her O2 sats have sat at 58. She's been peeking around 61 but dips into the low 40s every few hours. Last night Dr's thought this was because her CO2 levels were too low of all things. They said b/c she is breathing over the ventilator that she is exhaling all her CO2 and her brain is telling her body that it doesn't need to oxygenate her blood that much since the body is so low on CO2. They allowed her CO2 levels to rise which also helped her O2 levels, but they can't find the "sweet spot" where her CO2 levels aren't too high or her O2 levels aren't too low. They aren't sure what to do.

Dr's tried extabating her two nights ago with no success, they believe due to the fluid she is carrying. So they started a lasix drip yesterday and added another diuretic every 12 hours to try and drain the excess fluid. Once her body doesn't have to fight against the weight of this fluid, they are hoping to try and extabate again. The nature of the Glenn, her new circulatory system, does not lend itself well to being on the ventilator, so they want her off of it asap.

Today, when we spoke with her team, they said there was a small effusion on her right side, but it was too small to try and remove it with a needle - they don't want to poke the lungs. So they are hoping the extra diuretics remove this. They are talking about doing another Cath to see if they are missing something if some answers don't show up today. She's not one to bounce back well after a procedure, so the thought of her going in for another one before she's stabilized from the last is painful.

She still has yet to eat since 6 hrs before her surgery, but I suppose since they are trying to keep her sedated, she doesn't know the difference. Dr's are struggling keeping her sedated as well b/c they give all they can and she still responds to stimulus through it. Due to her response, they keep paralyzing her so she can't respond. Dr's want her to let the ventilator do the breathing instead of her breathing 3 times in between each assisted breath, they want her to drop the extra fluid, raise her oxygen levels, keep her CO2 levels safe, have the leak close on it's own, and to get her off the ventilator asap.

Please be praying for all of the above, for Eric's and my health, for Elliot's understanding, and for our outside lives (bills, jobs, insurance, school, deadlines, etc) to be taken care of in our "spare time" without added stress. Thank you so much!

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

We're up... and we're down

All day I've been excited about writing this update. So many great things happened for Arden. She moved from her intensive care unit to an intermediate care unit (3 West). Her arterial line was taken out and she got off all her IV meds, she got her first wagon ride as she traveled up from the 2nd floor to the 3rd, she drank her entire bottle (42mL or 1.5oz) and kept it all down, the physical therapist worked with her to let us hold her on her tummy with her head on our shoulder! It WAS a good day for Arden. Then Eric went in to feed her her 9pm bottle and thought she felt warm. Her last temp was a bit high (37.4c) but could be from all the movement/changes she went through today. When they took her temp again she was 38c which is about 101f. Not good. The nurse had fed her before Eric got there (he was bummed) and said she only took 12mL but we don't know if that is b/c she has a temp or b/c the nurse didn't try to get her to drink more like we do. By the time Eric left, the doctor had come in and examined Arden. She gave her Motrin b/c her heart and respiratory rate were elevated, and ordered a blood draw and urine sample for analysis and culture. Eric said during the whole time Arden was fairly content - I guess she's been through worse. We just called for an update and her nurse said the Motrin dropped the heart and respiratory rate like they wanted and it also dropped her temp. Praise God! The immediate blood work came back and all her blood levels looked normal so the doctor decided to put a hold on the antibiotics. They were just about to draw the urine sample when we called. Cultures obviously take a couple days to see if anything grows. Doctor said there wasn't anything alarming at this point and she will stay on the intermediate care floor. Eric and I will be at the hospital all day tomorrow since he doesn't have to work. I'll update more when I can. I know you are, but we ask anyway for your continued prayer over her health and healing. Thank you.

I'll try to visit here more - sorry!

Wow, I never realized how much I've turned into a facebook user until I saw that the last thing here was that I was in labor. Huh. Sorry.
So Arden was born 1/6/10 at 4:03 through natural childbirth. She did amazing! The OB made sure I had a chance to hear her cry and hold her hands before the drs swept her away. She didn't need to go to the cath lab like they thought she might, and was doing so well they moved her surgery date for her first open heart surgery to the 8th. So at two days old she had her first surgery and did amazing. They kept her chest open to allow for post-surgical swelling and were able to close her chest yesterday, the 13th. The doctors are now doing their best to stablize her. Her heart rate should be below 170 ideally, and she started on the Billy light for her Jaundice last night. That, with the following update, should get you up to speed:

Thanks for all the prayer. Arden's heart rate is currently in the low 180s to the high/mid 170s. She still has a slight fever, which is odd b/c she doesn't feel warm at all. But that is due to her body not being that great at getting blood where it needs to go yet. Dr. said that despite this hiccup, they still think they will start weening her off the respirator tonight or tomorrow since her blood pressure is good as are her lungs. She's lost all of her IVs, not b/c they aren't needed but b/c they stopped working. So they are currently in the process of giving Arden a PICC line. This is basically an IV that that can last for months, if needed. they are going in through a vein in the leg and the line will go through the vein up close to the heart. Pray this works b/c if it doesn't, they are running out of places to poke her for an IV... poor thing! She is still under the Billy light for her Jaundice and will measure her levels after the PICC line is in. She is going through SO much!
Poor Elliot was put down for a nap today and kept getting into trouble. Then around 2:30 the fire alarm went off so any chance for a nap was thrown out the window as Eric scooped him up and ran down three flights of stairs only to be told it was a false alarm when he got to the bottom. When I called at 3:15 he was still awake talking in bed. By the time I got back to the RMH at 4, he was asleep. We've decided to just let him sleep. We know he needs it... oops, it's 4:30, sounds like he's waking up. Oh well. If he isn't perhaps I can steal a quick nap. That would be AMAZING!
Eric says he has a headache. We are hoping it's just because of the events circling us right now and he isn't getting sick. We don't know what would happen if one or both of us got sick! Not only would the sick one not be able to see Arden, but we'd probably be asked to leave the RMH for the health of others. Good grief!
I'm exhausted. I'll be headed back to the hospital tonight after dinner though so Arden won't be alone. Also, my tooth that lost a filling months ago is killing me. any cold, even my finger touching the tooth if my hands are cold, feels awful. Pray for, I don't know, something. I feel like I am asking for the same prayer over and over again, but we so appreciate the support! This email might sound a bit defeated, but we aren't. We know we worship a mighty God who is sitting at the end of all this smiling at our growth. This is what drives us through the hard times. when we find ourselves in the muck, we do our best to just look around and find Jesus, because we know He is there with us. He is our strength and our courage. Today I'm asking him to be my energy. :) Much love to you all up there. We hope to join you soon.

here we go

just a quick note to say they broke my water and we are waiting for arden to come. if she's not here by 4, they'll do a c-section. pray pray pray for her to come quickly, for miracles, for health, and for our doctors. thanks!