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.