Well, we are having more issues with low blood sugars in our little man. Apparently, that is why he has really long periods of being extremely fussy and inconsolable. I am grateful for that!! Now, the question is what do we do about it.

The new medication he is on for his heart rhythm issues does have a tendency to lower blood sugar. However, it seems to be the general consensus that the low blood sugar is probably not related to the the meds. My guess is that they will put him on a new mediation to help regulate his blood sugar. We will just have to see what they decide.

The best news is all this decision making can be done out of the icu!! As long as they decide to keep him on his current mediation for his heart rhythm, we will most likely go to the floor today. :)

Well, we are once again back in the Cardiac ICU...this time for real.  A lot has happened over the last few days.

Yesterday, the team decided to do another echo (or ultrasound of the heart) to check Joshua's heart function.  He has been really symptomatic...meaning he has had some really heavy breathing, working really hard to breath (called "retracted breathing"), REALLY sweaty (like...really...sweaty pig boy!  I have given him a sponge bath every day and he still smells!), and pretty pale and clammy.  These symptoms made them think that he was having decreased heart function or maybe more obstructions in his veins or arteries.  Hence...the echo.

They decided to do the echo in the ICU...not because there was much concern but because the radiology department was full and they would have to wait much longer to get a time slot.  The ICU knows Joshua, so it was a great option.  The echo went great...Joshua had to be sedated for a while, but only with two small doses of Adavan (Joshua's drug of choice).  The results of the echo actually turned out much better than they thought they would be, which we were very happy about (although, it still makes us wonder why he was so symptomatic for so long...still working on that mystery).

So, we were feeling good by yesterday evening.  It looked like it would be another quiet night when Joshua decided to have another arrhythmia.  This was actually the same arrhythmia he had the very first time.  His heart rate jumped to 220 beats per minute (it had been sitting in the 150s before) and his EKG was abnormal.  After a hour of stumbling around to get it fixed (BIG difference between the floor and ICU...), they got him hooked up the the 12-point EKG and got the dreaded "adenaseen" medication (I have NO idea how to spell that).  Right before they gave it, however, his EKG started looking more normal, but his heart rate stayed in the 220s. 

We finally got a bed in the icu where they started to give him a medication called a beta blocker. This med actually blocks some of the electrolytes that help the heart beat. By doing this, it slows the heart down and hopefully decreases the chance of the arrhythmia from happening again. This was done through his IV and within another hour, he was looking much better with a heart rate of 130.

Now, the plan is to decrease the IV beta blocker and start him on a new oral version. Also, we will have to address the other symptoms at some point. Hopefully, we will be out of the ICU soon.

In the mean time, here are some pictures of what we have been up to.

Our little man sleeping.  I love this one!!

This was during his sedated echo-when we gave him his medication (Adavan), he  moved into this position and no matter what any of us did, he stayed in this position.  Since this was a good position for the tech, we let him be. He just looks awkward...

Photo shoot! Top left-half smile, top right: "the stink eye," Bottom left: Cranky pants, Bottom right: content

Joshua looking at his toys!

We love having visitors!  Here we are with Aunt Rebecca and her good friend, Taryn.

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 :)

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.

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!

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!

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!!

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).

Sorry for the long wait on the update.  The last few days have been very emotional and the last thing me or Tim really wanted to do was write about it.  However, I really want it written down so we can remember it all.

The last thing we talked about was getting his CATH procedure done.  This was done on Tuesday. This procedure is when they take a catheter tube and put it through a large vein in his leg.  They run it all the way up to his heart where they release a dye and they can see where the blood flows.  They can also measure pressures in different parts of the heart and vessels surrounding it.  This information was the last piece of the puzzle the doctors needed to figure out the best way to move forward.

On Wednesday, Joshua was moved out of the CICU and up to the floor.  This has been nice, since they are not as strict with visitors and we have a little more room to breath.  The only reason we are still in the hospital now are feeding issues.  We are working with him on that.  He needs to be taking about 65cc (I think it is about 2 oz?) of breast milk at each feeding.  Right now, he can handle about 10-20 cc (about 1/3 of an oz) by mouth and then another 35-40 by feeding tube.  We will work more with him over the next few days and hopefully get home soon.

Now, for the really hard update....once the doctors got all the pieces to the very complex puzzle that is our son's anatomy, we anticipated them coming to us and telling us what they thought was the best way to proceed...then we would simply tell them that we agree and move forward with that plan.  What we did NOT anticipate was having to make a choice, a very difficult choice: To operate or not to operate.

There are several issues with Joshua's heart, and all combined, make the surgeries very high risk and very complicated.  The first surgery would most likely be at Stanford if we chose that route.  The surgeon at Stanford is the best in the world for the procedure that needs to be done.  He's done the most, but not as complex as our little guys.  He's only operated on about 14 kids in the last 25 years with what our son has--6 of which are still alive.  There isn't much information on how to treat this the best.  And this is just the first of many surgeries he would need. On the other hand, if we simply felt him alone, there is a possibility that he would live a relatively long life, but not necessarily.  He could live 2, 5, 10, 20, maybe 40 years...we just don't have any idea. What makes it even more difficult is that half the cardiologist say not to operate, the others are saying it's the best option.  The vote is very split and ultimately, it comes to what we decide.

We have been relying heavily on our Heavenly Father to help us make this extremely difficult choice.  We went through a session of the temple this evening and Tim and I felt some very strong promptings, but we still plan to get as much information as possible.  In the mean time, we are soliciting the prayers and faith of all our friends and family at this time.  We are going through a lot of turmoil as we try to make the best decision for Joshua and for our family. 

Now, for tomorrow, Joshua gets another test done.  This test will tell us if his stomach is on the wrong side and if he has mal-rotation.  Mal-rotation (i'm not positive on the spelling) is when the intestines are not rotated correctly, thus a kink in the intestines becomes much more likely. (I think of a garden hose when thinking of this concept).  If there is malrotation, we would have to consider a surgery to fix that as well, depending on the severity of it.   

The doctors are great here and we feel very supported from all sides--family, friends, coworkers, medical staff, and of course, the Lord.  Again, please keep little Joshua and our family in your prayers.  Thanks for everything!!

Saturday 8 AM: Stephanie woke up and felt her first strong contraction.  With Logan, her water broke and they were able to get her an epideral before she felt serious contractions.  Such was not the case on Saturday.  I went to work at worked from 8-1:30 PM.  After getting off of work, I called Stephanie.  She said she was laying down, unable to move due to contractions.  They were occuring every 15 minutes or so.

After getting home, I started to pack the car and finish packing our bags.  We had plans to meet the siblings to go to festival of trees around 4:30.  4:30 came and we were still in Spanish Fork, not in Sandy--where the Festival of Trees was.  We finally started toward Salt Lake.  All the while, Stephanie still had contractions every so often.  Stephanie ended up calling University Hospital Labor and Delivery and asked questions on when she should come in.  She then tracked her contractions for the next hour.

Excited for the Festival of Trees, I convinced Stephanie to go in and see some trees.  After meeting up with family, it was about 2 minutes of viewing trees when we left the event and started our way to the hospital.  We arrived at 7:15 PM with Stephanie ready for that epidural.  7:45 we were admitted to the hospital and moved to a temporary delivery room.  Stephanie was dialated to a 4.  @7:18: Contraction; @7:21: Contraction; @7:26 Contraction...I think you get the picture.  I've never seen Stephanie in so much pain--it was hard to watch.  I wanted to take the pain upon myself when I saw it.  Unfortunately, I couldn't.  Luckily, the epidural was given @9:05.  At 9:45, she was measured again and she was complete.  Right about then, the nurses started to panic.  (In my mind, I thought we still had a few hours--boy was I wrong!)  We were then rushed into an Operating Room that was connected with the ICU.  Upon entering, I helped the doctors clear a spot for Stephanie's bed and a route to the window that led to the NICU.  At 10:02 PM, Joshua Kent Ipson was born.  Within 10 seconds, he was handed through the window and started to be stablized.  A kind nurse took our camera to capture a few photos for us.  I tried to look through the window, but Joshua was surrounded by 4-5 doctors, allowing me to only see a foot or hand here or there.

Soon, Stephanie was moved back into the 'temporary delivery room' where we were before the OR.  After about 15 minutes there, we were moved to a recovery room.  We then were able to visit Joshua in the NICU for a little bit, in which we also were able to hold him for the first time.  Absolutely a precious moment!  This was unexpected but absolutely amazing!  After 15 minutes, we were asked to leave as another baby was being brought in and they needed the area cleared.  We went back to Stephanie's room and waited for Life Flight to arrive.  Around 1 AM, Life Flight came with Joshua on their stretcher.  After a few pictures (can be seen on Facebook), I left with Life Flight to take him to Primary Children's Medical Center.  We walked over using the bridge that connects the two hospitals and arrived at the Cardiac ICU. 

Fifteen minutes later, (2:00 AM) one of the cardiologist started Joshua's first test: an echocardiogram.  I then went back to Stephanie's room at the University Hospital to get some rest.  We later found out the Echo took around 4.5 hours.  I thought it was only 2.5 hours, but apparently Joshua's heart condition was more complex and very unique.  Some of the diagnosis are as follows: 1) Dextracardia--Position of the heart is on the right side of the chest, not on the left side; 2) Heterotaxy--the heart is basically flipped.  He also has two right sides; 3) Main pulmonary atresia--the main pulmonary artery is not found.  The pulmonary artery is the main artery that carries blood from the heart to the lungs.  4) Hypoplasia of the right ventricle--underdeveloped right ventricle 5) Lungs appear to be supplied by arterial collaterals with no MPA segment noted--Lungs are getting blood, but they aren't sure where from.  They are suspecting arterial collaterals are delivering the blood.  6) Bi-lateral superior vena cavae without bridging vein 7) 3 Pulmonary veins drain into an upper vertical vein which dump into the right atrium--pulmonary veins are veins that take blood from the lungs to the heart.  Typically there are four and they should dump into the left atrium.

In addition to the 7 items mentioned above, there are a few other complications which we won't go into at this time, however, the 7 are the major issues we are looking at. 

Today, Joshua had an abdominal ultrasound in which they looked at his anatomy and specifically, if he had a spleen.  I asked the nurse this evening and she said she didn't think they found a spleen.  We have not heard the official results of the ultrasound, but from the sounds of it, he doesn't have a spleen--which is the immune system for infants.

Stephanie has officially been discharged from the University Hospital and she seems to be recovering really well.

Tomorrow morning at 9:30, he has a Cardiac CATH test scheduled.  This is where they will put a tube with a camera into a vessel in his leg.  From there, they go up the vessel to the heart and then release a dye.  They measure the pressure in the veins and watch the blood flow.  This will give them the missing puzzle piece they are looking for--How the lungs are receiving blood.  (Since the MPA [main pulmonary artery] is missing, and his oxidation % is staying around the 90's, they are slightly puzzled how the blood is getting there)  After this test, they will then meet together on Wednesday morning.  (They being ANYONE that is SOMEBODY--aka All cardiologists, all surgeons, all etc)  They will come up with their game plan on how to proceed and when the first surgery will occur.  We pray for the best and that the doctors will be led to the best decision for our little guy. 

We appreciate all the prayers, messages, and love you have all shared with us.  We have felt power from on high and know that the Lord is watching over us and our little Joshua.

The final and probably most enlightening part of the appointment was our visit with the Fetal Heart Coordinator and our tour of the facilities.  This was the part that really opened our eyes to what it will be like and what we can expect.

We started out staying in the same room we met with the cardiologist and met with Kim, the Fetal Heart Coordinator.  Her job is to help us with the logistics of things...where will our baby be a lot, what will the first week be like, what are our lodging options, what are the rules of the hospital, where do we eat, what resources are available to us.  We went over a lot of different things with her in that room, but most of our questions were answered during the tour.

We started out in the Cardiac ICU of Primary Children's...yes, you read that right...they have an entire ICU dedicated just to the cardiac patients.  While there were mostly babies, we saw a number of older kids as well.  I think this will be very helpful, especially meeting other people in our situation.

Probably one of the most eye-opening experience was seeing a little baby who had just come out of heart surgery.  She was tiny, even for a normal baby.  But she looked even more tiny being hooked up to all the tubes, IVs, and monitors.  This little person had so much equipment around her it was very overwhelming.  My thought was, "No wonder you are not allowed to hold them! I wouldn't even know how to pick them up!!"  It was hard to think about our little baby in that position.  One thing Tim and I talked about was how difficult is was when Logan had to be on oxygen for those two days in the hospital and how helpless we felt.  We can only imagine those feelings will be exponentially bigger, since there will be so much less we will be able to do and for much longer. The reality of how serious these conditions are reached the surface for both of us.

However, there were some very encouraging things to me.  One thing that was wonderful to me is that there is one-on-one nursing in the ICU.  I think it will be so nice to have just a handful of nurses that we will be working with over our time there.  I am sure these will be relationships we will come to treasure and they will be a blessing throughout the ordeal. Also, I was encouraged at how confident they seemed in knowing how to handle these difficult situations.  While this is our first time going through this (and hopefully our last!!), I am so grateful that we will be surrounded by people that know what they are doing.  Once again, the Lord has put us where we need to be and surrounding us with the people we need to be with.

Next, we went to the "third floor," or the floor we would go once the baby does not need ICU care, but still needs to be in the hospital.  Apparently, they need to be off certain medications, have certain stats, etc. in order to be off the ICU.  Mostly, cardiac babies spend time on the third floor learning how to eat on their own.  When they go into surgery, they are given a feeding tube once their system can handle food.  Because of this, they do not have the skills to eat normally, so we have to take special care to teach them how.  They will not be able to leave the hospital until they can handle food on their own, whether that is orally or through a tube.  This, along with other issues, will be what we deal with on the third floor :)

Finally, we jumped over to the University of Utah hospital, where I will deliver this sweet little guy.  Primary Children's and University Hospital are two different hospitals, but they work very closely together and they are connected by a sky walk. You can get from one to the other in a matter of minutes.  I was very impressed with the Labor and Delivery.  They have a Newborn ICU right there.  In fact, one room (most likely the room I will deliver in)  is connected to the ICU with a little window (thing McDonald's drive through...I think it is the same type of window!!).  Once the baby is born, they can hand the baby through the window directly into the ICU, where they can stabilize him, clean him off, and prepare him for the short trip over to Primary Children's.

It usually takes them a few hours to get him ready, but once he is, they will get the life flight transport team to wheel him across the sky walk to the cardiac ICU.  Also, they are very accommodating to letting me go over to see him as much as I want, even though I will have just given birth.

Overall, it was very good for us to get a visual of where we will be dealing with everything.  Once again, I can't say enough how grateful we are to live so close to such an amazing facility.  Although we know it will be difficult, we know that the Lord has His hand in all of it. 

This section will be a little shorter, but I thought it was really interesting and I wanted to make note of it.  After we spoke with the cardiologist, a very nice lady came into the room to talk to us about being a part of a genetics study.  Basically, they are finding over 4,000 participants with congenital heart defects and studying their DNA to see if there is any genetic link to why they have it.  They will take blood samples from both me and Tim, and they will also use the blood from the umbilical cord for the baby (so they don't have to poke him again...since that will happen more than we want anyway).

This was another one of those "wow" moments for me...that we are going to have a baby where people want to use his condition to improve the medical community.  Apparently, we are going to be approached a lot to be part of different studies and it is just crazy to think about.  It will be interesting to be a part of, that is for sure. 

So, as you all know, we had a very big appointment last week with the cardiologist/case worker at Primary Children's Medical Center (PCMC) and the University of Utah hospitals. All in all, it was a very good appointment, although it was a big eye opener to what we are going to be dealing with in the time to come.  I have decided to break up the appointment into three different parts (since we were there for over 3 hours and it was a LOT of information!)

The very first thing we did was a fetal echo-cardiogram.  This is the test they have done at every cardiology appointment we have.  Basically, it feels just like a regular ultrasound, but they take very specific measurements in the the heart, including pressures blood flow, and all sorts of other things.  They also look over the vessels around the heart.  I watched closely this time and they took over 100 pictures of the heart! (It is crazy to think about all the pictures this little guy has of his heart in his digital medical chart already and he is not even born yet!)  This test takes about 45 minutes to complete. 

Once we had the test done, they took us into a consultation room where we meet one on one with the cardiologist.  This time, we met with one of the other 4 fetal cardiologists at the hospital.  Her name was Dr. Pinto.  We were very impressed with her.  The results of the test were good...they didn't find anything else wrong.  I have to tell you, after a few of these appointments, I have started to feel some real anxiety about what they are going to find and what news they are going to tell us.  If they couldn't tell us that things are looking better and that some of the issues had gone away, I was just fine knowing that I didn't have to process some other complication to this already very complicated situation.  First anxiety issue over come.

Although we did not find anything new, I felt it was really good for us to get another cardiologists perspective on things.  The first cardiologist we have been seeing (Dr. Su) is absolutely wonderful, but I always felt he was being a little too optimistic.  We left the last appointment with him with real hope that we might not have to deal with surgery right away.  After our visit with Dr. Pinto, we are preparing for surgery.  There are just too many variables that have to go our way to avoid surgery.  While this may seem like a downside, I am actually very grateful for the realistic perspective and I will work much harder in the future to make sure I know exactly what they are thinking so I can prepare properly.  Just give me the facts so I know!  I am learning very quickly how to ask questions and understand as much as possible.

Another thing I want to say here is how grateful I am for the medical staff and team that will be working on our baby.  Like I said, there are 4 fetal cardiologists, however, there are over 25 pediatric cardiologists at Primary Children's!  Not to mention all the nurses, staff, and others who spend their whole life working with children with heart issues.  I feel so blessed that the Lord has put us in a position to be close to these specialists.  Just one of the many blessings we have seen throughout this whole thing!