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!

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!!