We are out of the Cath lab and back in the Cardiac ICU.  The cath went a lot better than previously thought.  Going into the cath lab, it appeared that the pulmonary veins were narrowing, thus causing the heavy, fast, and deep breathing he was displaying.  With the 4 pulmonary veins closing off, blood is unable to get from the lungs to the heart.  We had no clue what news the cath procedure would bring or the ultimate outcome would be.

Upon word the cath procedure was done, we spoke with Dr. Martin.  She was the doctor performing the cath.  She instantly told us she had "good news" for us.  She proceeded to tell us that only 1 out of the 4 pulmonary veins was closing off.  This was much better than all 4 of them closing off--as previously thought and feared.  Although it is not great news that the vein is closing off, it is better that only one of them is doing so.  The body is able to function with 3 of the veins if the one does close off.

During the cath procedure, Dr. Martin did balloon the vein, re-opening it.  The probability of the vein re-closing is very high.  The time period is unknown for when/if it does/will.  We will probably be watching the vein closely for weeks to come.  Unfortunately, there probably won't be any visual signs of it closing off.  As for the heavy breathing, it is believed to be due to a lower dose of Lasix.  They have increased the dosage and his breathing has improved significantly.  We will be staying the night in the CICU, for monitoring purposes.  Tomorrow, he will be evaluated and hopefully will be able to be home in a short time!   

So, I will go back and write what happened the last few days, but I want to put on here that we are back in the cath lab. It looks like there is more narrowing in the pulmonary veins and they are going to try and open it up. We will update when it is over.

Well, we finished our first day on the floor and it was great! I love being here and having goals that will get us closer to HOME! It is a lot busier for me, as the parent, since they really encourage parental care for more things...so we are more comfortable when we go home.  All that is good with me!  I love taking care of my baby :)

There are a few things we are working on with Joshua now that we are out of ICU.  First, getting his heart rhythms under control.  The cardiologists are hoping the irregular rhythms he has been having was just due to the stress the heart under went during the surgery and that it might not be an issue anymore.  They are going to try taking him off some of the medications, since the risks they pose are not worth risking if the rhythms have corrected.  We will watch him over the next few days to see if any of the irregular rhythms occur.  If they do, they will try some other less-risky meds.  This may mean a trip back to the ICU in case his heart does not agree with the meds.  They will need to have a nurse to watch very carefully.  Hopefully, he does well withOUT medication, so we can avoid that detour.

Another thing we are working on are feeding.  We have been working with a speech therapist to help him.  We will be doing a swallow study tomorrow to hopefully get a better idea of what he can and can't do right now and what we need to work on.  We also need to figure out why his glucose levels drop to a scary level when we try to feed him over an hour instead of continuous feeds.  Hopefully more answers for that tomorrow :)

The next big milestone has been reached...we are out of the ICU!! What a relief! I really was getting frustrated with all the false alarms we were having...but it all worked out right.

I almost thought today would be another false alarm. Right after the doctors told us we would go to the floor, Joshua decided to have another small irregular heart rhythm. I was sure we would be staying another night. However, they checked the EKGs and double checked his electrolytes (after some serious digging with a needle...I swear this kid is not going to have any veins left after this...) and everything looked good. Thy are going to evaluate his medications for his heart rhythms one more time, just to make sure he is getting the proper dose.

We are very excited to be on the floor, but I did get one bit of bad news. The unit just started their "flu season" policy of no visitors under that age of 2...which means no Logan hangin' out with us in the room. This was a blow to me, since I was excited to have Logan more involved and I wouldn't feel so divided between my boys. I'm still hoping I can figure out a way, but we will do what we have to do. In the mean time, we are very grateful for the progress Joshua has made and for reaching this big milestone!!

Well, we are still in the icu...I am starting to feel like a broken record since I am saying that so often. After a chest x ray this morning, they discovered that his lungs are looking wet and hazy again. That worried them since he had such problems with them for so long. So, we stay.

Fortunately, Joshua doesn't seem to be showing any symptoms of poor lungs...no struggle to breath, no desats, no retracting...so they are not putting him in any extra support at this time. However, if his x ray does not improve tomorrow, they may need to put him back on the high flow...

Needless to say, we are a little frustrated, but I am grateful these are just small hiccups and nothing to serious keeping us here. We are going to stop planning on leaving and just make plans to stay until he is ready to go.

In good news, his glucose levels have seemed to improve, so hopefully we are past the worst with that issue!

We have discovered he LOVES the swing :) This one they have here plays classical music as well, which I also find very calming.

Well, one more night in the ICU...I hope. They still wanted to watch him one more night because of his glucose levels and to make sure the new medication for his arrhythmia is working. It is hard to see him doing so well and us not moving forward, but if there is anything I have learned through all of this is that it just takes time...

We had a really nice chat with Logan over webcam today. He is still in Boise with my parents and he is having a great time. I realized how much he has grown up over the past month...and how much I have misses of this stage. I feel so incredibly blessed to have a son that does so well with all this craziness, but It is hard to see how much he has grown up with out me around. I made a vow today that I will never take one moment with any of my kids for granted. Each moment is so precious.

We were hoping by today that we would out of the ICU, but Joshua decided to make other plans.

Over the past 3 days, Joshua has been having these spells of irregular heart rhythm. From what they can tell, it is different then the ones he had a while ago and seem to be related to him having two SA nodes in the atria of the heart (look it up...pretty fascinating). His heart rate gets fast, he gets sweaty, limp and his EKG is very weird. They are trying to figure out what is causing all of this so they can treat it. Hopefully it will be something simple.

Another thing that showed up this morning was his glucose levels were pretty low. After testing it a few times and it still being low, they sent a bunch of labs in to see why that is happening. Hopefully that won't add any more complications to this recovery.

Joshua is such a sweet baby. When you look into his eyes, he has such wisdom and love in them. I feel so blessed to be his mom. Hopefully we will be out of the icu soon and on our way back home!

One day, one of our nurses put him in this cute sleeper for the day.  It was so good to see him in real clothes and look relatively normal!

This is him getting is Echo done.  It is basically an ultrasound of the heart where they check function and flow. Everything came out normal.  This was our first experience with have Joshua sedated for his echo, at least with us in the room.  I was not really happy with the sedation medication they gave him (it was called Ketamine...for those of you who know), since it didn't knock him out very well and he had a really hard time coming out of it.  He was really mad and it took a little longer than I would have liked.  I hope next time they can use something else.

In the mean time, we are having a lot of snuggle time!

Yesterday I finally got to hold Joshua for the first time since before his surgery.  We were not allowed to hold him for a lot of reasons, but the last thing that was keeping us from being able to was his central lines.  These lines went directly to the heart and there is a high risk of infection, so we have to limit the amount of time holding and touching to decrease the chance of them getting infected.  However, we don't have to worry about that anymore because they got taken out yesterday!  So, I spent the afternoon snuggling :)  It was awesome!

Welcome to the life of a heart baby...two steps forward, one step back. That has been the story of our life the last few days.

Our last post was full of positive steps forward...medications down, tubes out, wires out, good stats. However, we have had a few steps back the last few days.

One, that darn breathing!! One of he side affects of a major surgery is the build up of fluid on the lungs. Joshua had quite a bit and it even caused the bottom part of his right lung to collapse a little. Since they extubated him, they have been trying everything to get that lung healthy. Right now, he is on a c-pap machine, just like someone with sleep apnea. This machine pushes air with high pressure to help keep the lungs open. You can tell how he feels about having a tornado blow up his nose in the picture below.  It does seem that it is not getting any worse, but it is just taking forever to see any improvements.  I really think this is going to be what keeps us in the ICU for the longest.

Darn C-Pap machine!

Another scary thing that happened was an irregular heart rhythm.  When this happened the first time, it was one of the scariest days of us being here.  He was getting his breathing treatment when our nurse noticed his heart rate above 220 (normally, it is between 130-160).  When it didn't come down quickly, she called the doctors in and they noticed the EKG (you know that squiggly line that shows your heart beating...that actually means something!) was abnormal.  He was having something called SVT.  Basically, the upper part of his heart was beating faster than the bottom part, so blood was not circulating properly.  In order to get it back to a normal beat, they had to inject a medication that basically stops the heart for a millisecond and then it starts beating again at a normal rhythm.  When they use this medication, they have to be ready in case the heart does not start again.  So, they brought the "crash cart" right outside the room.  This is the cart that holds the infamous "shocker" so they can shock the heart back in case it didn't start on its own.  Fortunately, the medication worked just like it was suppose to.

You can imagine I was a little overwhelmed with all of that, since I was sitting in the room when it happened.  I spent the rest of the day decompressing with music and watching TV...and it really did take all day to get my heart rate down and my mind to stop racing.  It definitely made me nervous about life at home with this little guy...when I don't have the nurses, doctors, and monitors to tell me what is going on.  But, I guess I will just have to trust that the Lord will help me with all of that.

Anyway, they were able to figure out what happened with his heart.  Apparently, Joshua's heart has an extra piece of tissue on the edge of his atrium that conducts the electrical impulses of the heart.  When the heart beats just right, this extra tissue gets the impulse and cases the atria to get into an abnormal beat.  The cardiologist has him on a medication that decreases the chances of this happening again, but he is monitoring everything by having a 12-point EKG done every day.  He is quite the looker with all the leads on for that...

All the leads for is 12-point EKG.  I sort of think he looks like something out of a comic book...you know the bad guy in Spider man 2?

Octo-man!

So, many people have been asking about our little Logan boy, so I thought I would give a quick update on how he is doing.  Fortunately, the Lord blessed me with an AMAZING toddler who is well adjusted and very adaptable to different situations.  I can tell that the Lord has prepared him to be the big brother of Joshua.

Logan visiting Joshua for the first time.  He was very concerned and kept pointing to him saying "Josh."

Since we have been at the hospital, he has been staying with Tim's sister and their family.  Tim's mom has been in town and has taken over watching him during the day.  Each day, she brings him to the hospital and he gets to see "Josh" (as Logan calls him).  We spend a few minutes in the room with Joshua and then we go up to the third floor where they have an awesome playroom!  Logan has found some awesome toys there and really loves it.  After some time in the playroom, we eat lunch in the cafeteria.  He knows exactly how to get a tray and walks straight to where they keep the milk.  Once lunch is over, Tim's mom takes him back to the house to have a nap.

Tim's sister has 3 boys, two of which are close to Logan's age.  One day, they went to the dinosaur museum and got to play in the mud!  They enjoy playing together.

The playroom has tons of things to do!  Putting stuff in the basket and pushing it around is definitely a favorite.  This was taken the day of Joshua's surgery.

One of the hardest things for me and Tim through all of this is balancing our time between our two boys.  I think it is an adjustment any parent would have to go through with each new kid, but it is much harder when one is in the hospital.  We tend to question ourselves whether we are doing the right thing or handling it correctly.  All we can do, however, is the best we can and pray the Lord guides us to know what is best for each member of our family. 

The breathing tube came out this morning!! HUGE milestone! He seems to be tolerating life without it pretty well. They will still keep a close eye on him to make sure they don't need to put it back in. So far, he is doing great :)

Wow...the last 72 hours have been some of the best Joshua has had so far!  They have removed all his chest tubes, his catheter (hurray for changing diapers again!!), and his pacer wires.  He is WAY down on medications he needs and cuts them down more and more each day.  The hardest part for me to watch is them taking him off the pain medicine. Apparently, it is very easy for them to get used to taking the medicine and they can go through some mild withdrawal symptoms.  Even those seem better today, since they started cutting back a little slower.  All in all, things are looking so good!

Wide awake! He is awake more and more.  All the nurses comment on his bright eyes :)  I just love that I can see those eyes again!  The more they take away his sedation, the more I see my sweet boy come back.

They were able to take the bandage off his chest incision.  Check out that manly scar!  He will have an awesome story to tell his classmates someday!

It is amazing to me how many people are working so hard to get him better.  This picture was taken when they were trying to fix his Arterial line.  They had our nurse, the fellow, the lead tech, and two surgeons in the room!  They tried for about 2 hours to put in a new one, only to have the surgeons come in and fix the one he already had.  Crazy!

Our next big milestone is getting his breathing tube out!  I am hopeful it will happen today, but it could be tomorrow.  They are still a little concerned because he has had some fluid in his lungs that makes them nervous.  His lungs sound better every day, but they don't want to take the breathing tube out only to have to put it back in.  Apparently it can be difficult to out it back in because the neck can be inflamed and swollen, making the airway smaller.  So, while I hope it comes out today, I do not want them to take it out early.  So we will just have to wait and see. 

We have also had some fun decorating his room.  It is fun for Logan to see all the fun decorations and it makes it a little more fun for all of us! 

The window of his door.  We love monkeys!  Thanks to my mom, we have some serious monkey business happenin'!  As soon as she heard we could decorate, my mom took care of finding the perfect things for us :)

More monkeys inside.

Our checklist!  We are slowly making progress and working towards these milestones. Can't wait to cross more off!!

Thursday was a pretty good day for Joshua. Right now, Te doctors have a few goals for him each day: (1) continue getting rid of fluid and hopefully become less swollen, (2) get the fluid off the lungs and work towards getting off the ventilator. (3) keep his intestines from getting worse.

So, lets just go through each goal. He is doing really well with getting rid o fluid. On Thursday, he was negative 140 cc...meaning they minus what they put into him, he got rid of a total of 140 cc. It was not as much as the day before, but as long as he is negative, we are heading in the right direction. It is a very slow process, but we are all about baby steps right now!

Ok...the lungs. Honestly, his lungs are the biggest concern right now. His right lung has a lot of fluid in it, which is really affecting his ventilation. Through the last few days, they have been suctioning out quite a bit of mucus (I know...it's gross, sorry!). They so have him on a ventilator (his breathing tube) so they can make sure he is getting what he needs. They did have I change him to pressure control instead of volume control to be more safe (look it up...it is pretty fascinating what they can do!). So, we are working towards getting back to volume control and having him do more and more of the work in the breathing department. I am guessing it will be a few more days before we see any huge changes, but we are once again looking at the baby steps.

Finally, his intestines. We have been very encouraged that his x rays have been looking really good for the past few days. They decreased the number of x rays to every 12 hours instead of every 6. They have still been giving him the antibiotics and the general surgeons come in every few hours to do an exam. I am hoping we are past the worse scare for any serious problems, but it is always on our minds because it is so serious. Just keeping an eye on everything!!

Another thing that happened was his arterial line stopped working. This is one of the many lines Joshua has going into some vein or artery. This was one in his hand that was in an artery. They use this o measure his blood pressure continuously and also I draw blood for certain labs.

Now, putting in an arterial line is quite the process. It is a sterile procedure, so they have to get out he gowns and have someone their to assist to ensure it stays sterile. They bring in an ultrasound machine and use that to did the artery and make sure the line is in the artery instead of the vein.

The attending doctor and fellow decided to try putting a new one in his leg, but Joshua's arteries were so small, they were not able to do it (and they tried for about an hour!!). Finally, they called the surgeon to come do it and they were able to fix the one in his hand. So, after about a total of 2 and a half hours, Joshua had his original arterial line back.

So, we move on to the next day. Like I said, we are hoping for baby steps forward. Even though Joshua is progressing slowly, we are just grateful he is not moving backward. Please keep him in your prayers!!

On Tuesday morning, we were pleasantly surprised when Dr. Burch (our surgeon), was able to close Joshua's chest.  The procedure was done first thing in the morning (around 8am).  When he went in for the procedure, they were expecting to do three things: 1-clean out the chest cavity, 2- put in an abdominal catheter to help with drainage, 3- remove an arterial line that was no longer working right.

We didn't think they would be able to close the chest because he has been so swollen. However, when they put the catheter in, they were able to drain a TON of fluid and that allowed them to close the chest. This drain continues to help with the swelling a TON! We are grateful for that.

After the procedure, it was a pretty quiet day. All the way through today, we have just been waiting for the swelling to go down and his breathing to improve. The extra fluid in his body also affects how well he can breath on his own (hence the breathing tube). Hopefully in a few days, he will be able to get the breathing tube out.

Over the next few days, our goal really is to have Joshua keep his stats in a good place and keep draining as much fluid as possible. It has been slow progress so far, but we are encouraged that it will continue to improve. Hopefully he will also get off more and more of the medications. I feel that he is in a great place for only being a few days post op. We just keep telling Joshua to keep it up!!

A view of his room with the x-ray machine.  He was getting x-rays every 6 hours for a while.  Now they are doing them every 12 hours.

Check out that manly band-aid!  He is going to have a very manly scar to brag about someday :)

Opening his eyes!  He is starting to do this more often and he moves around a little, too!  Don't worry, they have him on some pretty awesome pain meds, so he doesn't feel any pain.  It was so good to see those bright eyes again!!

Monday ended up being a little more exciting than we would have wanted. The first 24 hours after surgery are some of the most critical hours of the recovery. The body is at it's weakest, especially the parts that were operated on.

For the most part, Joshua was handling things well. They had him on a number of different medications for his blood pressure, heart rate, a diuretic to help draw out the fluids making him swollen, pain, and sedation and he also had a breathing tube. All of this seemed to be helping and he was right where they expected him to be.

However, around 4 pm, he had a messy diaper which had a lot of blood in it. This really scared the medical team because bloody stool is a sign of a very serious problem in the gut. Sometimes after heart surgery, the heart has a hard time pumping the blood far enough to get to some of the lower parts of the body, including the intestines. Plus, the intestines require a lot of blood flow to to the energy and nutrients it needs to work properly. When it does not get the right amount, the inside walls can start to get eaten away by the bacteria in the gut and start to sluff off, thus the bloody stool.

They immediately started him on some antibiotics and scheduled an x-ray every 6 hours to check his intestines for any holes or dead tissue. If either of those things happened, he would require emergency surgery. The general surgery team came to assess him and determined no surgery was required at this time, but we were to keep a very close watch on him.

Fortunately, nothing else gave any clues that his intestines were getting any worse.  They continued to watch this very closely throughout the night.

Here are some pics of our little man on this day!

Logan got to see Joshua for the first time today, as well!  He was very concerned the whole time and kept pointing and saying "Josh."  We were able to explain that Joshua is sick right now and he has to have all that stuff on him because it is helping make him better.  Fortunately, we are allowed to have Logan come see him once a day for a few minutes.  We are really happy about that so we can help Logan understand as much as possible.

A close up of his little face. You can also see his white vest over his open chest and his breathing tube.

All the monitors, medications, and breathing machine he is hooked up to.  There is not much room for us, but we make it work.

Day of the Surgery

It is hard to describe the feelings we had this day.  We woke up having slept amazingly well--at least for parents that had a son going into surgery the next day.  The preparations of surgery started the night before with a sanitation bath and another one in the morning.  Joshua's last feed before the surgery occurred at 3 AM.  More tests were performed and his IV was inserted at 4 AM.  Around 7:15 AM, he went down for an echocardiogram.  In this echo, we discovered his vein was closing even more--another confirmation that we made the right decision.  He came back to the room around 8 AM.

Stephanie's parents met up with us shortly after that.  Many heart moms have told us that they wish they would have gotten a picture of their baby without the heart scar.  Because of this, we decided to take many pictures of Joshua.  Emily brought Logan and we continued to take pictures as a family and got the snapshots we wanted.  Logan was not thrilled to be a part of it.  Another special moment before surgery was the opportunity I had to bless Joshua with the power of God.  I will never forget this moment and experience that I had to bless my child before his major heart surgery.

Check out that cute body.

The whole family the morning of surgery.

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Stephanie's parents made it down from Boise after driving all night.

The time came quickly when it was time to take our precious one to the OR.  Stephanie carried him in our arms as we tried to hold back tears and avoid the thoughts of what may come.  At 10:10, we kissed our little guy one last time before handing him over to Dr. Pribble--the anesthesiologist.  We watched him take Joshua down the hall and into the room.  We stood there and cried for a few minutes then slowly made our way down to the waiting room.  After observing how empty the OR waiting room is on Sunday, we made our way up to our 3rd floor room to where Stephanie's parents were.  At 10:30, we attended the sacrament service here in the hospital.

The sacrament service was a great place to be.  We had just barely left our son to be operated on and our emotions were very tender.  The opening song, "The Spirit of God" got me teary eyed.  My eyes were not going to dry up for the rest of the meeting.  I believe Stephanie was in the same boat.  The Spirit was strong during the meeting and a great source of comfort and peace came over us.  John 14:27 doesn't lie!

Throughout the operation, we received the following updates:

11:30 AM--The prep work was completed.  Joshua was sedated and all the necessary IV's, tubes, and other prep work was completed.  Also, the first incision was made.

1:25 PM--He was not yet on the bypass machine.  Dr. Burch (the surgeon) was working on the BT shunt.  Everything up to that point was going well.

3:22 PM--He was now on the bypass machine and had been for about an hour.  Dr. Burch was done with the shunt and was working on the pulmonary veins.  Everything was going well.

5:24 PM--Dr. Burch was done with the complicated procedures.  He was putting in some draining tubes, ensuring that there wasn't any internal bleeding.  Also, they were about to start a post-op echo via the throat.  In this echo, they would be able to see the back of the heart and ensure there isn't anything wrong.

5:54 PM--The post-op echo looks good.  They will watch him over the next 1.5-2 hours for any signs of negative affects of the procedures.  They continued to look for any bleeding as well.  Everything looked good at this point.  Also, the chest would most likely remain open for a couple days. (With packing gauze on top of the open chest)

7:00 PM--All is done and Dr. Burch will be out shortly to speak with us.

7:15 PM--We met with Dr. Burch.  He looked very exhausted and he seemed in good spirits on how things went.  He explained more in detail on exactly what was done during the procedure.  He also gave us a shunt that is like the one in Joshua's chest.  Dr. Burch went with a 4.0 mm shunt, which is slightly bigger than most shunts they do.  His hope is that it will help promote greater growth in the native pulmonary artery.  The larger size shunt also allows Joshua more time before he outgrows the shunt.

8:25 PM--We were taken into the CICU and saw Joshua for the first time after his surgery.  He looked really good!  He had a lot of tubes and IV's coming out of his chest, arms, and legs, which was a bit hard to see.  We did like the little tux vest that he had on though!  (It was actually the packing gauze over his chest, but it looks like a vest)

During the night, they had to do a 12-point EKG-which looked CRAZY!  Talk about a lot of wires and tubes!

We spent quite a bit of time with him that night and I slept in the sleep room the hospital provided us that night.  Stephanie went to Mark and Barbara's house to spend the night with Logan and her parents.
 
All in all, our joy is full!  Ammon said it best in Alma 26:8;16;35.  No matter how the recovery road goes, we are grateful to our Heavenly Father for being with Joshua through the surgery. 

After being transferred to the 3rd floor in Primary Children's, Stephanie and I parted ways around 3 AM.  She stayed with Joshua and I went to Paul and Emily's where Logan was sleeping peacefully.  The next morning, Joshua had an echocardiogram (ultrasound on the heart) to take a deeper look at the heart.  It was determined that blood/fluid was pooling in the lungs.  Because of this, the cardiologist started Joshua on a medication called "Lasix".  This was to help him flush out the liquid in his body, thus relieving the pooling in the lungs. We were thinking he would be at Primary's for a couple days more then we would go home.

The afternoon came and in the echo, they also discovered that the pulmonary veins that were connected to the Superior Vena Cava (due to his Total Anomalous Pulmonary Venous Return) were starting to narrow.  This is what caused the blood/fluid to pool up in the lungs, thus causing Joshua to breath deep and heavy.  An echo would be done the next morning to determine the speed the veins were narrowing.

Bruce and Jerolyn Hicken, close family friends, came to visit.  As we were talking, the cardiologist and Dr. Burch (the cardiac surgeon) came into the room.  The cardiologist explained that she had called Dr. Burch to just let him know what was happening.  He was very concerned and came in--skipping his child's play.  They then proceeded to explain that the narrowing of these veins was starting to damage the lungs and that surgery was very urgent.  They suggested the next day at 10 AM. 

What a shock!  This seemed like a bombshell to us!  No pre-warning that they were going to have a deep conversation that was very emotionally taxing.  Up to this point, we were planning on surgery in February or March.  We also were planning on performing the operation at Stanford.  Also, we had not decided 100% that we wanted to proceed with surgery. 

We have been contemplating the idea of surgery for a few weeks.  We felt the outcomes of each were very cloudy and that both seemed like the same outcome.  We prayed daily on our decision.  We desired to make a decision where we would be able to look back and not have any regrets.  This seemed hard because the two outcomes of each were so unclear to us.  Over the experiences of Friday and Saturday, the Lord answered our prayers.  We were able to visually see how volatile a heart baby can be.  In addition, the surgeon told us that he only expected Joshua to live a few months at most if the surgery wasn't performed.  We also talked with our main cardiologist (Dr. Su) about the situation over the phone.  He answered all questions and a great peace came over both me and Stephanie.  We had received a confirmation that surgery was the way to go.  We knew we would be able to look back and not regret our decision--no matter what the outcome of surgery was.  The Lord was very involved in the whole process.

After deciding to proceed with surgery, we told our parents of our decision and that Joshua would be going into the operating room at 10 AM the next morning.  My parents quickly booked flights and found someone to teach their YM/YW lessons (Thank you if you were one of these subs!) and made preparations to leave.  Stephanie's parents quickly packed up and started their long drive to SLC.  Due to bad road conditions, they were driving all night.  Stephanie and I tried to sleep as much as we could that night for we had a long day coming up.

Here are some pictures of our sweet baby that day.  He was alert a lot of the day and very reactive to us.  What a blessing that turned out to be since we can remember him that way instead of hooked up to a bunch of machines.  

His bed on the 3rd floor.

A little surprised with the flash!

He LOVES his binky and I could just look at those eyes all day long!

Friday began as a normal day at our home.  Tim went off to work and I began preparations for a follow up appointment with our pediatrician, Dr. Knochel.  Neither of us expected what would happen in the following days.

The appointment was at 1:30pm.  He was going to look at his circulation, breathing, and check his weight.   His weight looked great and his coloring and stats as well.  However, his breathing concerned him quite a bit.  Joshua's breathing rate was very fast and he was sort of struggling to take breaths.  After having us wait for about 45 minutes and checking his breathing rate a second time, he sent us to Utah Valley hospital in Provo for some testing.

Once at the hospital, Joshua had to have his blood drawn--not a pleasant experience for such a youngster.  Actually, not pleasant for any age!  Anyways, I helped them draw blood and take x-rays by holding our sweet little Joshua.  Tim came from work and met me at the hospital to help watch Logan.  They went and looked at the Life Flight helicopter, which Logan enjoyed too much and wanted to see more helicopters. 

After the test results were sent to Dr. Knochel, he called us immediately to let us know that he was still concerned.  The idea at the time was a possible respiratory infection--one which would be hard for a young baby without a spleen or immune system.  He advised us to drive up to the ER at Primary Children's Medical Center.  We quickly packed our bags for two days, thinking we would be back by Sunday evening.  We dropped Logan off in Sandy, where Emily and Paul took Logan for the night.  Upon arrival at the ER at 8:30 PM, they took us back immediately and started tests.  They performed the same tests as Utah Valley Medical Center did and got the same results.  The on-call cardiologist was called and she came in.  By now, a few hours had passed.  Another test was done to see if it was a respitory infection, which came back negative.

The cardiologist almost sent us home, but decided that perhaps we should keep him at the hospital overnight to monitor him and have an echocardiogram done in the morning.  (This ended up being one of many tender mercies of the Lord to our family although it didn't seem so at the moment)  She also said he might start a medication called "Lasix" to reduce the blood/fluid in his lungs; the flooding of the fluid in the lungs was believed to be the cause of the heavy breathing.  We then waited 1.5 hours for a room on the third floor to be prepared.  After it was ready, we were transported to the room.  By now, it was a few hours into Saturday morning (2:30 AM).