Post-Surgery Update

Oh, what horrible bloggers are we. We've become very dependant on facebook for throwing out quick updates. So once surgery was over, that's what we did. For those who only see us on here, sorry for such a long delay after surgery.

Everything went great - surgery, recovery, coming home. Audrey is in great spirits and has handled everything beautifully. We're all home as of last Friday, and we head back down to Nashville on Sunday for a Monday morning follow-up with the plastic surgeon. Monday is also Alex's birthday, so we're letting him skip school and go with us. So we'll be celebrating number 17 with him in Nashville.

Thank you for all your prayers.

2 days after surgery

6 days after surgery

same picture, just closer so you can see her lip, which gets less puffy each day

Surgery Today

Audrey is set to have surgery to repair her cleft lip today at 12:00pm, local time (that's 1:00pm back home). Her palate is intact, so this is just to repair the lip. The surgery is supposed to last about 2 and 1/2 hours. The surgeon has told us to expect for her to be in the hospital for about 4-5 days.

Please keep her, the surgeon, and the surgery team in your prayers. We'll post again tomorrow afternoon. Thank you for your prayers.

All four grandparents and Alex came down Sunday and we walked around the Opryland Hotel and went out to eat. Here are some pictures.

A Little Catch Up (more to come)

Hello Everyone. For those following our journey thank you for your prayers and patience during our blog absence. We intentionally took time off of blogging for a while after Audrey's heart surgery so we could just spend time together as a family, and of course summer camp didn't leave much time to blog. But the last campers went home on Friday and we thought we'd put a short update on.

Audrey is doing great. All of her follow-up doctor appointments have gone great, including her 6 month follow up, where they cleared her for the lip surgery, which is scheduled for Monday, Sept 14th at Vanderbilt.

She has grown so much, not only physically - she has been walking for about three months now; we've lost count of the number of words she says; her hair has grown; her personality is pretty much the same but greatly amplified; and she is just plain wonderful.

Alex is doing great as well. He starts his Junior year of high school on Thursday. He is very much a young man with very little boy left, which is sad but we are very proud of him. We have five 2-week discipleship camps each summer and Alex participated in two of them. We got wonderful reports of how hard he worked, how he opened up about his life and faith, and how he stepped as a leader at times. We are blessed to have two wonderful children, and they each think the other is the greatest thing in the world.

Julie & I are doing well. We're both anxious for a slower work-pace and a more stable routine at home, that has to include exercise (mostly for Aaron). Our next post will be mostly pictures, as we have lots of them, and the one after that will probably be a lot more detail of our last several months.

Thank you all again for praying for us, and for praying for our friends the Cuozzo's. I'll let you read their blog - lydiahope.blospot.com, but I will say they have been home with Lydia for a couple of months now.

Here are a couple of pictures from today, so you can see how Audrey has grown.

We Can't Say Thank You Enough

Now that the Vanderbilt hospital time is over, we probably will take a break from posting for a while, but before we do, we have many people to thank. Plus, we have a few thoughts.

Our thanks are in no order, except the first, and we can't possibly mention everyone by name, but we do need to mention a few. First, we want to thank God for carrying us through this. There were so many times we were destroyed emotionally and physically. Had it not been for our Father giving us strength, we could not have made it.

We want to thank Alex, our son, for showing us the adult he will be in a matter of months (we count babies' ages in months up to 24; Alex is our baby and will legally be an adult in less than that). We are very proud of our son, who never complained, who prayed for his little sister, and who handled all of his responsibilities and inconveniences so well.

Thank you Jim and Sandy (Julie's parents), who gave their vacation time and lodging to give us a getaway, and provided babysitting so we could get away. Thanks to Charlie & Mary Lou (Aaron's parents), for taking care of Alex and letting us not have any worries back home. Thanks to Brett Hyder, Craig Bennett, and Lee Arrowood for getting Alex to Nashville and back home for us, and thanks to the many who offered to help with this.

Thanks to all the people who came and visited at the hospital. We were surprised to discover how many friends we have in Nashville. Thanks to everyone who called, texted, emailed, facebooked, and commented on here your words of encouragement. We read everyone, and I plan to put them all in a single document to print and keep.

Thanks to everyone who prayed. Julie had the idea of creating a facebook "event" to pray for Audrey. Between the two of us, we were able to invite about 700 people we know who are on facebook. Over 875 joined and said they would pray, and judging from the list at least half were people that were invited by other people. We also know our church, our sunday school class and our small group were all praying. Also, there were a huge number of people who put us on their church prayer list. One friend of ours who travels with a Milligan College singing group said, "You guys are sure well connected. Every church we've been to for weeks is praying for you all." By our own estimate, we believe thousands, if not tens of thousands, having been praying for our family.

Your prayers were heard by God and felt by us. Thank you.

Audrey is continuing to do well. She will be on her IV antibitoitics for about another week. She's still pretty cranky at times, but her personality is coming back, and each day we're seeing more and more adjustment.

I can't complete my blogging about this adventure without passing on an observation. Literally thousands, and probably more joined together reaching out to their heavenly Father in one effort, regardless of what state, country, church, movement, or denomination they belong to. That is the church that Jesus established. I know we have doctrinal differences, and that won't change anytime soon, but please know that while we may have these differences, we are to function as one body, as you have during this time.

We all serve a risen Savior, and we are all mandated to love His children. Thank you for loving us.

Home Again, Jiggity Jog!

We are very excited to announce that we arrived home this evening around 9:45! Audrey slept until Knoxville, where we stopped to eat. She then cried most of the rest of the way. We got in and had a chance to spend a little time with Alex, administer her IV antibiotics and now it's time for bed. Audrey hasn't seemed to get over the long car ride yet. It may be a long night. We'll hopefully post more tomorrow. Thanks again for your prayers.

A Difficult Weekend

Sorry for the delay between posts. It's been a difficult weekend.  I have been sick since Saturday evening, but I'm starting to do some better.  Julie's parents headed back home on Friday, thinking at that time, we'd be heading home today.  Not long after they left, we found out that we'd be heading home on Tuesday. Sandy came back yesterday to help Julie with Audrey, since I have been exiled from the hospital.

Audrey had a low fever last night, and the nurse mentioned not putting the pic line in until tomorrow morning, which we think means she won't be discharged until Wednesday.  As of right now, I haven't heard anymore from Julie, which means she hasn't heard from a doctor yet. 

Please continue to pray for us.  I know what a toll this is taking on both Audrey & Julie.  Audrey has come to despise the hospital room.  When she is in the stroller and out of the room, she is a completely different person and very happy.  When she's in the room she ranges from cranky to just plain miserable.  It was hard enough to hear setback after setback when Julie & I had each other right there to rely on, but now Julie's dealing with all of this with me only accessible by phone.  I am so thankful for Sandy for coming back down to help out.  

Please also keep my grandmother in your prayers.  She was admitted to the hospital this weekend in Erwin.  I've been told she's doing some better.  And, please keep Alex in your prayers.  We miss him greatly and just want to get home to him and get our family back together.

Thank you all for your prayers.

22 Days Later

That's a little misleading. We haven't been here that long yet, but that is the new target date - next Tuesday. So far, neither culture drawn directly from Audrey's vein have shown anything, but they identified the bacteria that has been growing in the culture from the IV line as staph, and not just any staph, a particularly nasty one along with a fairly mild strep bacteria.

Being very clear here - Audrey DOES NOT CURRENTLY HAVE A STAPH INFECTION. A sample of blood taken from her IV, which was removed right after drawing the blood, had staph & strep bacterium. The fact that none is growing in the blood not taken from this line, means she does not have these bacterium in her blood. Around 4 pm tomorrow, both cultures from her blood will be 48 hours old, and if they continue to show no bacteria at that point, this is definite that she does not have either of these infections - great news!

However, because this staph is a serious one, and given the fact that it was found in a line that was in her body, no chances can be taken. Not treating her with antibiotics for this staph is way too risky after heart surgery. So, Audrey is on a 14 day run of IV antibiotics. Another bit of good news is that although this staph is a serious one, it is pretty "sensitive" - meaning easy to knock out.

The antibiotics they started Wednesday at midnight is the one needed for this, so we're already 2 days into it. The plan is to put in a "PICC line" (new more permanent IV), monitor it for a day, and send us home Tuesday. The home infusion company will come to the hospital and train us on how to administer the IV ourselves, and we will take care of administering the antibiotics through her line at home for a week.

So, even though Audrey is most likely perfectly healthy, we are erring on the side of caution. It was not at all easy to hear that this healthy child would have to be here four more days, but we talked this over with her cardiologists and infectious disease specialists and we all agree this is best for her.

I have decided to stay through the weekend. Some of the doctors are saying we'll go home Monday and some are saying Tuesday. Hopefully it will be Monday, but we've learned not to get our hopes up, so we assume the longer of the two.

Please continue to pray that no bacteria grows in the blood samples and that this IV treatment goes smoothly. Please also pray that we get out of here on Tuesday as scheduled with no more setbacks.

Potential Good News

There is a possibility that Audrey doesn't have an infection at all. The doctors told us this morning that the bacteria that was growing was from the blood from the central IV line that was removed last night, and that there is a possibility that the bacteria is from a contaminant in the line and not actually in her body.

So, last night before they started her antibiotics, they drew some blood directly from her vein and not through an IV. This blood was put into culture to see if bacteria grows in it. If it does, Audrey has the infection and everything is as I said in the last post. If no bacteria grows, then it was a contaminant and Audrey doesn't have an infection.

If she does not have an infection, we should be able to come home sometime this weekend. They hope to be able to tell us for sure which it is by tomorrow. Please pray that it was a contaminant and not an infection.

Thank you all again for your prayers.

Please Continue to Pray

We just had a doctor report to us that a bacterial infection has grown in the blood culture that was taken from Audrey's IV line.  They are speaking with a cardiologist, and IV doc and an infection doc about the right antibiotics to start her on tonight.  They are also going to draw blood for another culture. This time directly from her vein to determine if the infection is in her blood stream or just where the one line was.  They also said by tomorrow, the bacteria will have grown more, giving a better indication of just exactly what she has.  At least this is my understanding of what I've been told.

It is very good news that they caught this before Audrey started showing symptoms of illness (her temperature has returned to normal after that one reading), so they can begin treatment right away, and we are very thankful for that.  

I am currently trying to stave off feelings of guilt for trying to get us home.  I know my motives were to get her in an environment where she'll eat & sleep better.  I am reminding myself that, even though I asked if we could go home and treat any possible infection there, I did agree in the end that staying was in her best interest. 

Please pray for Audrey, and that this infection can be killed quickly.  So far, the doctors haven't said anything that is scaring us.  So far, everything sounds very treatable. Please pray that this is and continues to be the case.

Please also pray for our family.  As you know Alex has been staying with my parents, who have been so wonderful in helping out, and Julie & I have both missed over two weeks of work now.  We've done some work from here, but in comparison to our regular routine, we've done very little.  The doctor said that nothing is definitive at this point, but we could be looking at staying until the antibiotics run their course, which would 5-7 days, depending on what she's put on.

At this point, our best option for our family and for the camp, seems to be for me to head home in the next day or two, if Julie's mom is willing to stay here with her.  We're talking about our options now.  It kills me to think of leaving Audrey here and leaving Julie, but it also kills both of us to think of being away from Alex this much longer. Please keep our decision making in your prayers and working out all of the logistics to follow through with our decision. 

How's that for asking for lots of prayers?  Other than this infection, which again does not seem to be showing symptoms of illness, Audrey is doing really well, and for that we are so thankful! And we are so thankful for all of you!  It is overwhelming and humbling to know that there thousands of people praying for our family.  Thank you.

Another 48 Hours

No, not the sequel to the movie starring Eddie Murphy & Nick Nolte, which by the way was not near as good as the original 48 Hours; not that I would watch a rated-R movie like that and enjoy it.

No, this "another 48 hours", refers to the news we heard this morning. Audrey was set to go home this morning, and from everything we can tell and everything the docs tell us, she doing great. But, at 4 am the nurses came in to get Audrey's temperature and blood pressure. Blood pressure was good. The temperature was low, and the doctor who came in soon after explained to me that a temperature that low can be as much of an indicator of an infection as a fever. So they ordered up labs on blood, and cultures on her urine and fluids from her IV.

The results from the blood came back negative (which is good unless you're Michael Scott or George Costanza), but the cultures take 48 hours, so that's how long they want us to stay now. 48 hours ends around 6:00am Friday morning.

I joined in on "rounds" this morning when the doctors discussed Audrey to see if I could convince them to let us go on home, and take her to her doctor if they called and said the cultures showed something. They said that heart surgery patients are at a higher risk of infection and that they couldn't let us go with a potential indicator of infection still there, but if things were still OK tomorrow morning they would consider letting us go after 36 hours.

This is not what we wanted, but would still be helpful. She would get to go home and sleep in her bed and we've promised her we won't come in every two hours to check her vitals, wake her up at 5am for a chest x-ray, or any other check unless she cries for us. Audrey is pretty sleep deprived at this point. She's shown very little interest in napping during the daytime hours, and between midnight and 7am seems to be the time to play "I'm just gonna have a quick listen" for everyone wearing scrubs within a one-mile radius.

It was so bad yesterday morning (5 doctors in a row, about 20 minutes apart each coming to take a "quick listen"), that in the wee hours this morning I went to the overnight resident doctor and asked that they all come at the same time or only one do the listening and tell the others what they heard. This doctors was so great about it, she took a listen then and we didn't see any other doctors for 4 hours letting Audrey get back to sleep.

Audrey's appetite has also not picked up to where it was and we all agree, doctors included, that getting out of the hospital and getting back into a normal routine will help this greatly.

The really good news is that Audrey is fine, the doctors don't think there's much to worry about. They are just being cautious, which we appreciate, regardless of how frustrating or depressing it may be.

Please pray Audrey to get more sleep and to eat more. Please also pray for our tolerance, which is being stretched. I'll also ask you to pray for the many people we've met whose children have just as serious conditions as Audrey, but with less favorable outcomes. There are many here who are hurting greatly - too many to mention specifics. It really opens your eyes to how this is ongoing, not just when we are in the hospital with them.

Unless something new happens, hopefully our next post will be to say we're headed home. For now we're gonna hang out. Maybe I'll go rent 48 hours.

Un-Tethered

Just a quick update.  Earlier today, we had been told that the chest tube would have to be in for at least another day, which meant we'd be here at least until Wednesday.  So this afternoon, Julie's parents came over, which they do every day - they've been wonderful - and we went to their condo and took a nap (we're currently sharing a pull-out twin bed at the hospital).  When we got back this evening, we were surprised to find out that they had removed the chest tube.

Since it was so late in the day, they still are looking at Wednesday at the earliest, but without any tubes, we can pick her up freely.  We can not express how exciting this is for us, and Audrey seems to be just as excited but she's expressing her excitement in a much more snugly way. Please join our praise.

A Much Better Day

It's 5:00am, I get a nudge from the nurse, expecting to be covered with a lead blanket for Audrey's x-ray, instead was told that they were moving us to a regular room in about 10 minutes.  Julie was asleep in a room they gave us for the night, so I asked for the phone number for that room.  They gave it to me. A very sleepy voice female answered, and I told her they were moving to the 6th floor.  A more awake voice responded, "We're moving to the 6th floor?"  I realized that his was not my wife.  I explained how they had given me the wrong number, but somehow, I don't think she was blaming the nurse near as much as I was.  

30 minutes later, after getting the right phone number and gathering our stuff, we were in the room.  Even though we felt evacuated, the rest of the day was great.  Audrey got a bath and got to put on PJ's.  She sat up a lot, was held a lot and even got to go for a wagon ride around the hospital.

She's still got a chest tube in draining fluid from around her lung.  We're waiting to hear from the doctors to find out if that can come out today.  Our feeling is that we'll be here 1 day after that tube comes out, but that's just our guess.  We'll know more hopefully soon.

Leaving the PICU

Maybe. The doctors feel like Audrey has made enough improvement to be moved to a regular room on the pediatric cardiac floor. The only thing holding her back is the availability of a room. So, it is possible that she may be in the PICU longer, but this is still a big step because, as far as recovery is concerned, she is out of the PICU.

Today they removed one of her two chest tubes and took her off of oxygen. He lungs continue to look better and one doctor thinks we may be out of here all together in a day or two. Please pray that Audrey is ready to leave that soon. We all want her to be here until she is absolutely healthy enough to leave, but we all want that to happen as soon as possible. We're ready to take her home.

She's also on fewer meds, which means she's more alert and aware. Even though she's alert, she's not herself yet. She's been through a lot, and we think, she's not sure it's over, so she's pretty reserved. If we do move out of PICU before leaving, besides the change of environment, we'll be free to take her for walks, either holding her or being pulled in a wagon. We think this will help her feel like things are behind her more. But, we think putting on clothes, getting in the car and going home will do the most.

Thank you all for your prayers. Please keep them coming. She's not completely better yet, and we are praying that her mood is a natural stuck-in-the-hospital thing and not any sort of adoption attachment setback. We're pretty sure it's the former.

We snapped this pic earlier. It was really nice to see her resting like this as opposed to what we've been watching lately.

Looking Brighter For Audrey, Additional Prayer Requests

Audrey is Making Strides

They were able to take Audrey off of her breathing tube a couple of hours ago and she is breathing well.  Praise God!  She was initially in pain, but they've given her some meds and she's resting fairly well.  Her throat seems to be sore and bothering her from where the breathing tube was.  She is hoarse and is aggravated about all the stuff she is still hooked up to.  She does have two remaining chest tubes that have been draining fluid around her lungs.  They have already ordered one to be removed this afternoon, and they think the other will come out in the morning and maybe even this evening.  If all continues to go well, she'll be out of the ICU tomorrow.

William Stettner

We found out this morning that back home in Johnson City, there was an explosion at a local auto repair shop.  From what we've heard almost everyone escaped with only minor injuries, except one man, William Stettner.  He is on the way to Vanderbilt by ambulance now.  I have met William on a couple of occasions, but we know his wife very well. I used to work with her and her company does work for the camp, so we see her a couple of times a week.

I don't know the full extent of his injuries and I don't know how much they want share.  I will say, I have been told that they don't feel they are life-threatening at this point, but please keep him and his family in your prayers.  Life-threatening or not, they must be very serious for them to rush him here.

As long as Audrey continues to do well, we will try to take some time and go see Mary.  If Mary wants me to, I'll include updates on William.  This family is very sweet and wonderful people, please keep them in your prayers.

Abigail Nageotte

The Nageotte family travelled with us to China and adopted little Abigail.  She had cleft palate surgery yesterday.  We haven't heard yet how it went.  Please keep them in your prayers.  Please also pray for Abigail's adjustment. She's had a harder time adjusting to her new life than Audrey has, and I'm sure they are praying that the surgery and recovery time in the hospital will cause them to grow closer and not make adjusting any harder.  They also have a blog if you want more detail: http://journeytoabigail-jeunesse.blogspot.com.

Alex has a Ride

I just wanted to give a quick update. Our prayers have been answered for getting Alex down here for the weekend. Thanks to Brett Hyder, Craig Bennett, and Lee Arrowood, we're able to get him both ways. I also want to say thanks to many others who have offered to drive him parts of the way too. These three fit together the best.

Audrey is resting well now. Please continue to pray for her. We're anxious for her to be off all of the sedation and pain meds and past these lung issues. Thanks for your prayers.

A Step Back, Please Pray

We started the day very optimistic, and at 3:30pm this has already become one of the hardest days.  The plan was to remove her breathing tube, and possibly remove the new tube that is draining fluid from the left lung, and move out of the PICU tomorrow morning. We found out early that they'll need to leave the tube that is doing the draining , but they would be able to remove the breathing tube and that we'd be moving to a regular room in the morning.

The first difficult news came from her surgeon, who did tell us Audrey was looking great all except for the one place in her right lung, and that they would most likely want her to stay in the hospital until it is clearer, which best case scenario would be going home in 3 days, but we should really plan on middle of next week.  This is really hard because we want her out and better, but we know they know what is best and she is getting great care.  But this is also hard because that is that much longer without Alex.

After this, they were able to remove her breathing tube, which only lasted about 2 hours.  After removing the tube, they determined that her airway was swollen, her breathing was very labored and she was not getting enough oxygen on her own.  So, they determined the best course of action was to re-intubate her with a smaller tube and give her a steroid for 24 hours to reduce the swelling.  The plan is to take her off of this tube tomorrow, hopefully for the last time.

They've also noticed some fluid around her other lung, so they are now putting in a drainage tube on the right side.  She is OK and still under the best care we can imagine, but greatly desiring her to be further along, seeing her struggle so hard to breathe, seeing her re-intubated, knowing that she's needs another tube to drain fluids, knowing that she now has at least 2 more PICU nights ahead of her, seeing her sedated again, and knowing how stressful this must be on her body.  Put all of this on top of missing our son too, it's taking a toll on us.

But, God is so good and giving us all we need - we're resting enough, eating enough, and we've got so much love and support here in town and back home, we know we'll make it fine.  So we are keeping our kids as the priority.  Please keep Audrey in your prayers - specifically that she would be able to come off the breathing tube tomorrow and do well without it, that the fluid around her lungs would drain as needed, and that the upper lobe of her right lung would see improvement.  We do need and appreciate your prayers for our strength, but of course we are more concerned with her than ourselves.

Please also pray that we find a way to get Alex here for the weekend and back home on Sunday.  So far we know we can get him from JC after school tomorrow to Knoxville.  We're working on getting him here from Knoxville and back home on Sunday.  If anyone is already making either of these trips and willing to take a well-mannered 16-year-old (he really is, no joke), please let us know.

Thank you all so much for your prayers.  

Another Night of Lung Treatment

The goal of intubating Audrey was to be able to send the treatment she was already receiving directly into her lungs. After 3 more rounds of treatments, the morning x-ray showed no improvement in her right lobe. The right side had the secretions in the air sacs inside the lung. The left lung had fluid around it, which was successfully drained with a new chest tube, that should be removed tomorrow.

Since the right side wasn't responding to treatment, they sent a scope down this afternoon and discovered, in the most basic terms, the upper lobe of the right lung (the one with the mucus secretions that won't clear) is positioned higher than normal, and that the breathing tube was inserted in the normal location, past that lobe. They believe that lobe was not receiving the treatment due to its position. So, they repositioned the breathing tube and she's receiving the treatment again until morning x-rays to see if there is more improvement.

If there isn't improvement, they feel like she has a strong enough cough now, that will only get stronger, and that she will be able to clear this lobe and open it back up over time. They just wanted to do everything they can to clear it for her. So it appears they will remove the breathing tube in the morning either way. They are keeping her pretty sedated and comfortable until then, which is good. She will respond to our voices, kick and reach for us from time to time. They say this is mostly a dream-like state for her. The nurses are great about keeping her as comfortable and pain-free as possible.

The really good news for the day is that they removed the 2 larger chest tubes that she has had since surgery. Once she's off of the breathing tube, and they remove the small chest tube they put in yesterday, she'll be down to a central line IV, which can be removed anytime.

We're still praying that she'll be discharged no later than Friday, but obviously our priority in praying is that she is healthy and ready to leave, whenever she's discharged.

Thank you all so much for praying for her. Please keep it up. God is watching over her.

"More Aggressive Treatment" - Please Continue to Pray

After the last couple of days of respiratory therapy to help clear up the secretions in the air sacs of her right lung that have caused it to partially collapse and fluid around her left lung,  Audrey's surgeon has determined that results have been too little to think that continuing on this path is the best way to go, so she has ordered more aggressive treatment.

What this means is they will be re-intubating her (put her back on a breathing tube), which will allow them to try to break up the secretions with some solution they can put in and be much more aggressive in suctioning them out to open up the right lung, and they will be placing another small chest tube to help drain the fluids on the left side.

Of course, when the doctor explained this to us, he told us of all of the risks, which we know are meant to inform and not scare, but we're human and you hear scary stuff.  So please continue to pray.  This is a "setback" to some extent.  This will result in a longer stay overall and a day or two more in the PICU.  The new treatment will be every 12 hours, and she will be at least partially sedated during this time, so we know she'll be partially sedated for another 24+ hours.

Julie & I are in complete agreement that this needs to be done and are trusting God completely through this.  Please pray for Audrey and us, and pray that this treatment works as they expect it to, that it clears up her lungs, and please pray that there are no complications involved.

Now, on to a sweet moment that happened as I was typing this post.  Julie was at the bed with Audrey. Up to this point, Audrey hadn't tried to talk since the surgery.  She held up her wrist and pointed at the IV marks, looked at Julie and said"Owww", in a long soft whisper.  Don't worry she wasn't exclaiming "ow" in pain, she was pointing to an "ow" that she saw.  

She then proceeded to try and pull every tube and wire off, partially succeeding once, so the nurse had to come in and secure a wire down with tape.  When she finished she looked at Audrey and said, "Now, hows that?".  Audrey clapped for her.

Dad's Turn

In case you are wondering where the incision is, I thought it may be a little shocking or insensitive to some, so I blurred it out.

The PICU Is Like One Big Party

Well, not really.  I guess it is if your version of a party is sleeping almost all of the time, only to be awoken with annoying stuff being done to you from time to time.  Mom & Dad know the things they are doing are good for her, but Audrey is mostly annoyed by it.

So far the ICU has been good.  The doctors and nurses have all been wonderful, although we rarely have the same nurse twice.  They tell us Audrey is progressing normally.  She keeps getting tubes, sensors, & meds removed, which is good.  They have taken enough tubes and things off to allow us to hold her.  Julie got to do this for a little while yesterday, which was a blessing for all of us.  Audrey seemed to rest so deeply during this.  She did get restless after about an hour and a half, and needed to be repositioned, so she went back to the bed.  We hope to be able to do this more and more.

As far as Julie & me, at night we take turns staying in the room with her and sleeping in the family sleep room. This is a small room with a twin bed, TV, and bathroom - plenty for what we need at night.  During the day, we're here with her most of the time.  We'll sneak out and grab a quick bite if she's sleeping well. Julie's parents will come in and sit with her for longer periods, allowing us to get out of the hospital for a couple of hours each day.  Thank you, Jim & Sandy.

Audrey has had one thing come up, that they tell us is common.  She has secretions in the air sacs in her right lung which have caused a portion of it to collapse, so she has had a couple of respiratory therapy sessions to help correct this, along with "deep suctioning" of the lungs.

The first therapy was to roll her on her side and beat the snot out of her back & chest with a small oxygen mask.  It sounds and looks a lot worse than it actually is.  They pound away pretty quickly on each side for a while.  Audrey first had a shocked look on her face, but then fell asleep.  It really seemed like she was just getting a good massage.  The next thing was a mask over her nose & mouth that repeatedly shot bursts of air.  This was vibrating her lungs and breaking up the mucus inside, making it easy to suction out.  She didn't sleep through this one.

It looks like she'll be in the PICU at least one more night.  They want to make sure her lung is cleared up before moving her to a regular room.  

Thank you all again for your prayers and support.  We have felt them and appreciate the encouragement we have received from so many.

Doing Well

Audrey had a good first night after surgery.  She's in the the PICU until, probably tomorrow sometime.  She's got many wires and tubes going on right now, and they'll be removing different tubes as she progresses.  Right now they've taken her off of some of the meds that have kept her asleep, so she can wake up and be taken off of her breathing tube.  She is breathing on her own, but she needs to be fully awake before they take this out.

They haven't given any indication so far, as to when she'll be discharged.  She'll have to leave the PICU and be moved to a regular room on the cardiac floor, before they'll be looking in that direction.  So, we've got a few more days ahead, but that's OK because the care here is incredible.

Hopefully later on today, I'll have more to report, but for now it's mostly rest and knowing that she is recovering well.

Thank you all again for your prayers.  I'll close with a picture I snapped with my phone yesterday on the way to surgery.

To Him Be the Glory!

Audrey's out of surgery and in recovery.  We'll get to see her in about an hour in the PICU, where she will be for the next couple of days, then she'll be in a regular room for 2-3 days.  We'll post more later.

Thank you all for praying.  Please join us in lifting up His name in praise.

A Small Correction & A Sweet Moment

I think I may have given the wrong impression with my last post re: my frustration.  I'm mostly posting this for my benefit, so I feel better about people knowing what I meant earlier. I am afraid that I made Dr. Christian, in particular, seem harsh or uncooperative, and honestly the opposite is true.

We were actually quite comforted with Dr. Christian saying that it would be in the morning and saying it as emphatically as she did.  I guess, for three reasons, first she is the surgeon who will be doing the operation, so her opinion means more to us than all the others; second,  moving back to the scheduled time instead of moving it up, means that Dr. Christian's team will all be in place - no substitutions; and third, the fact that she said it with such authority, it comforted us to know that, "OK, this we can count on."

My frustration was with the back-and-forth nature of how things have been scheduled, not with the final decision to wait until morning.  I just wanted to make sure it was clear that our frustration was not directed at Dr. Christian and really at any one person or group.  

Now on to a really sweet moment. As I sit here and type this, Julie is on my left asleep on the sleeper sofa in the room, and Audrey is right next to me on my right in the hospital baby bed, at about eye level to where I'm sitting.  A couple of minutes ago, two nurses came in to start her fluids in prep for surgery, which upset her a little, so when they left I reached over and stroked her face until it looked like she went to sleep.

I turned back to type in this post and about a minute later, this little girl, who's had much more try cry about than smile about let out a "hehhh!" in a whisper.  I looked over and she was smiling and reaching for me.  So, of course, I put the laptop down and reached out and took her hand (I could tell she wanted to hold hands), and I put my other hand on the back of her head.  She smiled again and went back to sleep.  

This is exactly the type of child she is.  She's had a rough three days, and from her perspective has been tortured (I could tell story after story of how rough these tests have been on her), but even after all of that, this tender-hearted little girl, smiled at her dad, took his hand and stole his heart, again.

She's done this a few times with both of us, not just dad, but I wanted to share this one. We love this little girl.

Thank you all for your encouragement and your prayers.

Insert Your Preferred Frustrated Word Here

So a little while ago we found out there was a communication breakdown at the hospital. Audrey's surgeon didn't reschedule the surgery, and when word got to her that someone rescheduled it, she basically said, "Nope, the surgery is on for the morning, unless there is an emergency", which there isn't one.

I know many of you want to pray during the surgery. I am very sorry that they keep us changing. According to Dr. Christian, Audrey's surgeon, she is set for 8am tomorrow, and she has assured us that, short of an emergency, she has the final say.

What a emotional ride. I'm going to take a much needed nap. Thanks for your prayers.

Sent from my Verizon Wireless BlackBerry

This Afternoon! Rescheduled Again

We've just been told that Audrey's tests have come back good, and they want to go ahead and move forward with surgery this afternoon, probably around 5pm (central time), maybe a little later, but in that area.  It is a 4-5 hour surgery, So she'll be moved to recovery in the pediatric cardiology icu sometime after 9 this evening, where she'll be for 2-3 days and then moved back to a patient room for a couple of days.

Early this morning her blood oxygen level dropped very low, emphasizing the need for this surgery.  So as soon as all of the tests came back OK, they went ahead and moved her up to today.

Please keep Audrey and the medical team in your prayers.  Thank you all for your prayers, love, and support.

Delayed, But Just a Day

Audrey's surgery has been moved from Thursday morning to Friday morning.  Today was a really rough day for Audrey, mostly because she got very little sleep last night and there were lots more tests today.  There was a hidden camera in the room and when it detected Audrey was asleep, it rang a bell outside alerting the hospital staff that it was time to come in and wake her for a new test or to go over things we'd already gone over several times.  Well, not really, but was beginning to feel that way.

Actually, the hospital staff has been wonderful, and we know the importance of and greatly appreciate every test and conversation, even if it did cause her to sleep less.  But, she was sleep deprived and napped every chance she could.  She's asleep now (11:00pm), and there are no scheduled tests until 5:00am. So tomorrow should be a better day.

Today a geneticist examined Audrey to determine if her heart condition, cleft lip, and the presence of "Cafe au lait" spots (small brown spots a little bigger than freckles) are related genetically.  He told us that there are a few syndromes that could relate a couple of these together or some that could explain them separately, and that they needed to run tests.  

One thing he made sure to point out is that having a genetic syndrome, isn't necessarily a sign of something bad, that it is much more of an explanation of how things are the way they are and are a great way to determine if there could be any complications that may arise from having these syndromes.  

Simply put, everything we're born with has a genetic explanation, so he is looking to see what those are and if it can help better prepare Audrey for her surgeries and life after those surgeries.  

This is where the delay comes in.  One of the complications that "could" arise from one of the "possible" genetic conditions could affect her heart surgery and recovery.  So, he and his team have asked for another day to rule this out.

I am so thankful that God has given us the ability to discover so much of His creation, and I am so thankful for people who choose to do this to help others.  We, of course, want Audrey's surgery as soon as possible, so she'll have full energy, stop turning blue in the fingers & lips, grow at a normal rate, and live a long and healthy life, but any delay that comes as the result of being cautious for her safety, we welcome completely.

Please pray for a restful night, and uneventful tomorrow, negative tests for these things that could complicate the surgery & recovery.  We are still overwhelmed, humbled and lifted by your prayers, and we know Audrey is in God's hands.

A Night In The ER

We got to Vanderbilt at 10:15 last night. The pediatric cardiology clinic had us come to the ER, since it was so late. They admitted Audrey so they could start her on IV fluids. Unfortunately they didn't have a room, so we spent the night in the ER exam room.

After all the checking in, seeing several different doctors, and going through numerous tests, Audrey was able go back to sleep about 4:15am until 7:30. Pretty unsettling for her, but given all this, we think she did great.

All the tests continue to come back good and the fever has stayed away without any medication. It's 9:30am now and Audrey is back asleep. At some point (hopefully soon) we'll start the pre-op work and the consultation with the surgeon. They've given no indication of delay, but they haven't told us we're definitely on for tomorrow. Hopefully we'll know before too long.

We assume they plan for her to spend tonight too, so we expect to be moved to a room at some point today as well. Thanks again for the prayers.
Sent from my Verizon Wireless BlackBerry

From the Car, On Our Way to Vanderbilt

Well, we are on the road.. Thank you all so much for your prayers. We are overwhelmed with how many people are lifting our little girl to the Lord. Keep the prayers coming.

Yesterday, Audrey woke up with a low fever. We called our pediatrician, who asked us to come in today, which we did.

The super-short version is: after all kinds of tests, they ruled out everything except a cold, and not a real bad one at that. But given her condition and being 2 days away from open-heart surgery, they want us to go to the hospital tonight to determine if they want to admit her and start her on fluids, so she can get over this cold quickly and not delay her surgery.

So here we are, set to arrive at Vanderbilt around 10 (11 back home). Tylenol has worked so far to get her temperature back to normal, which it has been for the last few hours. It may be morning before I can report again. Please pray that she gets better soon and of course please keep praying for the surgery.
Sent from my Verizon Wireless BlackBerry

Big Prayer Request, Big Praise, and a Little Catch-up!

Praise
Well we had intended to post this week leading up to Audrey’s surgery asking all who read this to prayer for our little girl. We’re still doing that, but we were surprised with some wonderful news a couple of nights ago. Our friends Jeff and Naomi Cuozzo, whom you may remember traveled with us and were heartbroken in China when they weren’t able to adopt, received a new referral this past week. We are so happy for them and so thankful to God for continuing to bless us all! You can read about their journey at lydiahope.blogspot.com.

One more thing I would note about the Cuozzo’s – this couple planted a church in England and started a Christian school; they’ve already incurred the expense of travel to China once and now have to raise the funds to do so again; they will also now have to work out how to leave the church, school and their three children. Please keep them in your prayers, and I will ask you to make a donation to their travel expenses (on their blog site). Julie and I will be doing so, and any amount you can give will be well spent, and I know greatly appreciated.

Congratulations Jeff & Naomi! We love you guys.

Prayer Request
Please do pray for Audrey. As you can imagine, this is a very hard thing as a parent to see your child go through. It is only one heart surgery, but they will be repairing two separate areas, and it is open-heart surgery, so the seriousness is there. As hard as it is for us as parents to watch, we know that Audrey is the one who has to endure this the most and our heart breaks for her. Please pray for her.

I would be lying if I told you that we have no fear. As confident as we are that God is and has always been in control, and that He will bring her through this safely, we still have moments of dread/fear/stress/you-name-it. God created all of these emotions and we know they are natural, but we are praying and are faithful in His mighty hand, so satan won’t gain a foothold by twisting these emotions into something that would remove our faith. Please pray for us to remain strong by relying on God’s strength.

We will be posting updates at least daily during her hospital stay. They may be short, but your prayers and love for us is important, so we’ll find a way to post even quick little updates.

Thank you all for your love, support and prayers. They mean the world to us.

Catching Up
For those of you who have come here looking for updates, we hope you understand that instead of blogging we’ve been enjoying our newly expanded family through the holidays and trying to establish a new routine. We’ve had Audrey for 10 weeks now and have developed a strong bond with her. She is so wonderful and so loved by us and by the rest of the family, and she loves us so much. We pretty much think she's awesome. Rather than try to go over all the many things that have happened, we thought we’d mostly share some pictures, which are below. But first here’s a list of words she says, new things she has been doing, and a few of her favorite things:

• "Mama"
  
• "Ah Da" or "Da Da"
  
• "Alah!" (Alex, the exclamation point is because she usually yells it)
  
• "Woof Woof"
  
• "Tsssss" (Shhhhhh - she puts her index finger over her lips)
  
• "Uh Oh"
• "Ow" (she's learning what this really means, but she currently thinks this is what a mole is called, because that's what mom says when Audrey tries to pull one of Mom's off. So, now Audrey points at moles and says, "Ow?"
• "Yeah, Yeah"
  
• Took her first steps (cruising now but still not walking on her own yet)
  
• Waves bye-bye
• Kisses and pats her stuffed animals
• Kisses and hugs mom and dad
  
• Blows kisses
• Plays peek-a-boo
• Whispers with us
• Mimics lots of things we do
  
• Loves music, Elmo, baths, the cats, playing with Alex, and snuggling with mom and dad