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!!