I have wanted to type a little about Joshua's name and how we ended up choosing it.  Actually, the name Joshua was one that Tim and I talked about long before we even had Logan.  You know, those conversations you have when you are thinking about the future and just having a good time.  We knew that our first son's middle name would be Timothy, after Dad, and it was just too convenient that both our fathers' names were Kent, so we decided that would be the middle name of our second son.  Honestly, at the time I was pregnant with Logan, I liked the name Joshua better, but Logan sounded better with Timothy, so that is what we used first.

As I look back now, I think the Lord was intervening.  Logan's name fits him so perfectly and I know it was meant to be his name.  The same with Joshua.

After we found out about Joshua's condition, I struggled with whether Joshua was the right name for him.  Suddenly, the meaning became much more important to me.  I wanted something that would reflect the fighter in him.  I knew he was going to need to be a fighter to get through everything he would need to go through and I wanted a name that would reflect that.  Up until the day he was born, I was still unsure if Joshua really was the name for my special son.  However, I could not find something that fit, so I went with it.

That first day after Joshua arrived, my mother in law made a very interesting observation that told me the Lord was with us the whole time when choosing this name.  She commented on how appropriate it was that we would use the name of the prophet that the Lord spoke these words to: "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."  Even in his short little life, we have seen that the Lord has never left little Joshua.  He is constantly there, helping him and strengthening him and us. 

Also, I have come to understand that the meaning of the name Joshua fits right into this theme.  The name "Joshua" means "God rescues" or "Jehovah is Salvation."  Our little son is a fighter, but he is made strong because he has his Heavenly Father on his side.  Our entire family has felt the strengthening power of the Lord through everything and I know He will continue to be there.  Joshua's name will be a constant reminder of our Savior's love for us, even during the hardest of times...no...especially during those times. 

This week, we had our first cardiology appointment since leaving the hospital. It was basically a follow up to see how things were going with Joshua and also to hear what the Stanford team had to say about the possible surgery.

We started out the appointment getting Joshua a chest x-ray.  Dr. Su (our cardiologist) used it to make sure there was no change in Joshua's heart size and to make sure there was no fluid building up.  Everything looked great.

Other good news was the oxygen.  Since Joshua seems to do pretty well on room air for the most part, he really doesn't need to be on it all the time (hurray!).  Basically, we watch his coloring and keep him on the monitor to watch his stats.  If we notice the stats going down, we can put the oxygen back on.  It is just nice that we are not so tethered down by the tubing all the time!!

The main thing we talked about with Dr. Su was what the team at Stanford had to say about Joshua's possible surgery.  In the short, they were very confident in their ability to complete this first surgery and have it be successful...VERY confident.  This was a relief to me since the cardiologists at Primary's seemed so unsure about it.  However, the surgeons at Stanford are world known for this type of surgery.  There are three things that they would do for this surgery:

1) Unifocalization of the collaterals and Pulmonary Artery:  This means they would take all the collaterals (the "veins" basically doing alot of the work the pulmonary artery should be doing) and the very weak pulmonary artery and putting them together.  This would lower the pressure in the lungs.

2) Create a connection between the ventricle and the pulmonary artery.   One thing they are going to try and accomplish with this is strengthening the existing pulmonary artery.  By pumping more blood through it, the hope is that the tissue will strengthen.  This would be important if the collaterals ever started to shrink.

3) Finally, they would fix the total anomalous venous return.  Right now, Joshua's blood coming back from the lungs to the heart is taking a very round about way.  The surgeons would create a shorter pathway.

We are still trying to decide if surgery is the right way to go.  We still need lots of prayers in our behalf for that.  I am struggling with figuring out whether my feelings are Heavenly Father or if they are just me being an over-protective mother.  It is difficult to think about putting Joshua through surgery when he seems to be doing so well.  It is hard to think about how much he would have to go through if we went that route.  However, it is really hard to think about him getting worse and knowing there was something we could have done if we had acted sooner.  It is a difficult decision.

Anyway, we also had Joshua's 2 week well-child check with our pediatrician.  I can't tell you how wonderful our pediatrician is!  I feel so blessed because he has worked with lots of children with heart conditions and really understood the basics of what we are dealing with.  I was excited when I didn't need to explain exactly what all the diagnosis were...he already knew the implications of everything!  He is also wanting to follow him closely to be sure he is gaining the weight he needs to.  Joshua has not gained any weight since leaving the hospital, so we have adjusted his feedings (increase calories) and we will be going in for a weight check each week for the next month.  Other than the feedings and weigh issues, Joshua looks great!  Again, I am so excited to have a pediatrician I can trust!!

To close things up today, check out this cute picture I got of our little man!! Smiles already!

First off, tomorrow we have a cardiology appointment.  We are hoping to hear news from the Stanford team in regards to their opinions on the surgeries.  We are also hoping they tell us that Joshua does not need his oxygen...breathing room air is the goal!!

I am feeling a little anxiety over this appointment.  Hopefully, it is not too emotionally draining...

In the mean time, I wanted to document the different stuff that our little Joshua needs now that we are home. This is the equipment we have been using the last week! All of it has been provided by a home health company.  I have to tell you, I never thought I would need a home health company in my life...but I am grateful they are around!

Feeding tube pump.  Because little Joshua is still having a hard time finishing his meals by mouth, he still needs to take about half the milk by feeding tube.  This is the pump we put it in.

Oxygen tank.  Little Joshua is on a little "whiff" of oxygen right now (For those of you familiar with oxygen dosage, he is on .06 L...sometimes .03 L) This tank sits in our bedroom...away from Logan :)

The oxygen tank stays in our bedroom permanently and Joshua is connected to it by this tubing...it is about 50 ft. long.  Having him on a "tether" can be tricky at times, but we stay in the living room most of the time, so it is not too bad.

Because of Joshua's special eating needs, I have been pumping milk from day one.  We tried nursing in the hospital a couple times, but it gets tricky knowing if he is getting enough, so I find it easier to just pump.  However, I have never had my dish drain look quite like this before.  We have since added 3 more bottles to that mix. Lots of dishes...

Oxygen saturation monitor.  This is how we know his oxygen saturation levels.  He is connected to this little machine on his foot.  The top number is the O2 saturation (we want it between 75-85% saturation).  The bottom number tells us his heart rate.

Here is what little Joshua looks like with his tubes.  The orange one going into his nose is his feeding tube.  The clear one is the oxygen tube.  He is such a little trooper dealing with them!  Just to let you know, he does NOT like that oxygen tube up his nose, but he deals with it like a champ!

Well, I thought I would give a quick update on how little Joshua is doing.  He continues to improve with his eating skills.  Right now, our goal is to have him eating 68cc (a little over 2 oz) of milk at each feeding (every 3-4 hours).  Currently, he is averaging about 35 cc by mouth, and then the rest has to take through his feeding tube.  The reason he is struggling so much is because he actually gets too tired to keep sucking.  The doctors say this is extremely normal for "heart babies." All we can do right now is continue to have him practice.

Today we also had a visit from the early intervention program, Kids Who Count.  This program is designed to help with early childhood education and make sure kids are reaching their milestones and that they will be ready to go to preschool by age three. The doctors at Primary Children's highly recommended us getting into this program to be sure Joshua is reaching his milestone, especially with his feedings.  We will be getting consistent visits from a Occupational Therapist, who will work with Joshua on his feedings and also work with his other skills, and a nurse, who will watch from the medical side. 

Finally, I thought it was time to have a few pictures on this blog!  Here is our journey over the last two weeks in pictures!!

Getting ready to deliver!  Instead of the planned induction on the 4th, I went into labor on Saturday the 1st!  After waking up with contractions that morning, little Joshua was born at 10:02pm.

We were not expecting to be able to hold him right away, but just an hour after he was born, the nurse in the NICU bent a few rules and let us hold him before he got moved over to Primary's.  It was a precious moment :)

All his little tubes, IV's, and EKG leads.

Dad holding him for the first time!

Even though Primary Children's is just next door and connected to University Hospital with a walkway, the Life Flight team was still called in to transport our little man over.  He had quite the ride over, don't you think?

This is one of my favorite pictures.  This was taken the first time I got to visit him in the Cardiac ICU over at Primary Children's.

Once we found out about our difficult decision of whether or not to proceed with surgery or not, we have been calling on our Heavenly Father a lot.  We decided to go to the temple on night and had our parents come with us.  It was a wonderful experience and seeing the lights on Temple Square was a nice little perk :)

We decided to bless little Joshua in the hospital since both sets of our parents were in town and we were not planning on taking him to church any time soon.  I didn't know the spirit could be so strong in such a small hospital room.  Tim did a wonderful job and gave a beautiful blessing.

The crowd who came to the blessing.

Heading home!  On Sunday, December 8, after a week and one day in the hospital, we got to go home!

It did not take long to settle into home life.  Logan has been an awesome older brother and LOVES holding his little brother!

He is also a big help when it comes to giving Joshua his bottle and helping clean out the feeding tube pump.  We LOVE being home!

Wow...it feels so good to be home from the hospital!  We feel so blessed that our stay was so short this time around.  We appreciate all the prayers and thoughts that came our way during that time and can still feel them on a daily basis.

Joshua is doing great.  They did send us home with oxygen, which we were hoping to avoid.  Joshua's oxygen saturation levels were actually pretty good on room air...most of the time.  Every once in a while, however, they would drop into the low 60's (our goal is to have them between 75 and 85%).  Because of that, the cardiologist felt more comfortable having him on a very low dose of oxygen all the time.  For those of you who are familiar with oxygen dosage, he is on a mere .03 L...basically as low as you can be.  It is so low that the doctors were suprised that Joshua's body could even tell a difference!  We are hoping that when we go to our cardiologist appointment next week that we can take the oxygen off :)  Cross your fingers!! (Joshua does NOT like that thing up his nose...and who would??!)

Joshua also has a feeding tube.  This is because eating for these little "heart babies"  is extremely tiring and Joshua simply wears out before he can get all the nutrients he needs.  So, we feed him the first part of his milk with a bottle by mouth and whatever he can't finish, we put through the feeding tube.  Each feeding is 68 cc (30 cc=1 oz, so he gets just over 2 oz) of breast milk, which we fortify with a little bit of formula to up the calorie content.  Right now, he is averaging about 38 cc's by mouth, which is much better than the 10-20 he was doing the last few days at the hospital.  The speech therapist at the hospital (who works with these babies on their feeding skills), compared these kids learning to eat like us preparing to run a marathon.  They simply need to keep practicing and training and eventually, they will have the strength and endurance to do a whole feed.  He is definitely getting stronger every day, so we hope the feeding tube will be gone soon as well.

Now, I have had a few people ask about Logan.  He is such a great older brother.  He is very good at getting Joshua's diapers and wipes, throwing away diapers, helping hold the bottle during feedings, and he LOVES to hold him.  So far, I have not noticed any harsh feelings towards the baby.  I hope this keeps up once Tim goes back to work, since right now, one of us can be on Logan duty and one of us on Joshua duty.  Logan did awesome while we were at the hospital, but the last two days we were there, we started to notice him really missing Tim and me.  Whenever we saw him, he would not want to leave our sides and it got difficult to say good bye when the time came.  The first night we were back from the hospital, he was happier than we had seen him in a few days.  He pulled out all his toys, talked to whoever would listen, and just had a bounce in his step!  He was just so excited to be home.  He is such a good boy and I feel so blessed that he has handled things as well as he has.

We have a cardiologist appointment next week, like I said.  We will continue to monitor Joshua.  We still have to make a decision about whether or not to proceed with surgery, but we still have time for that.  We are waiting to hear back from a team of specialists from Stanford University, who specialize in one of the surgeries he will need.  Once we hear back from them, we hope to make the decision after that.  Please keep us in your prayers, especially when it comes to that choice.  It is not a clear answer and we are relying heavily on our Father in Heaven to help us know which path is right for our family and little Joshua.

Thanks again for all the love and support you have all given.  We will do our best to give updates on a regular basis.  We love you all!!

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.