Some exciting news! And Nicholas turned 4 years old!

I took Nicholas to his third cardiology appointment since we got home from Stanford and at the previous two appointments his gradient was measuring consistanly at around 30mmHg.  But on Tuesday this week, we finally saw Dr. Wright and he took another two echos and he found the gradient was about 45mmHg.  I AM SO EXCITED about this!!!  I was feeling a bit discouraged that everything we have gone through so far was kind of in vain, but 45mmHg is double from what Nicholas started from.  And to make it even better, Dr. Wright thinks that it is even higher, but Nic's anatomy and his tenderness around his incision makes it hard to get a true, accurate measurement.  He thinks we will probably be looking at going back to Stanford in a few months for more Cardiac Catheterization and another MRI so they can get an accurate measurement inside his heart and then decide when to do his next PA banding.  Hopefully that band is doing it's job and getting Nic's LV ready to take over systemic pumping....

On another note, Nicholas celebrated his 4th birthday on January 9th.  Happy Birthday to my big boy!  We enjoyed the company of Nonna and Nono Degano and Nic's cousin Noah and auntie Laura and uncle Wayne.  I attempted to make Nicholas a "monster truck cake" and it turned out pretty cute.  He liked it at least! 

Worry Wart

I should be in bed right now, but for whatever reason, I am not.  So I decided to update my blog! 

I started back to work this week, and it was good to be back.  I often feel like work is my "escape" and that it is what keeps me sane, so needless to say, it felt really good.  I had a moment of insanity, though, right before I left on Monday morning.  Nicholas woke up while I was getting ready and I decided that the area above his incision looked puffy, like it was really swollen.  I thought, OF ALL THE LUCK!  It swells up the day I go back to work!  So I called home later that morning to talk to Lorenzo and he said it looked fine, the same as before.  I asked to talk to my mom and she said it felt normal, like bone underneath, not fluid or something.  But I was still unsure, so I called our pediatric cardiologist and made an appointment for after I got off work.  I met Lorenzo and the kids there and the cardiologist was having the echo tech take an echo.  We came back into the exam room and the cardiologist (a different one than usual, Dr Wright is on vacation) said although he could see what I meant, it was completely normal and nothing to worry about.  WHEW!!  

I think the moral of this story is that mommies worry.  I want my little Nicholas to be healthy and I worry that I won't be able to protect him as I go back to work.  I need to remember that he needs to just be a kid and that I can't shield him from everything.  With that being said, it is easier said than done! 

We are three weeks post-op today and he continues to amaze me.  

Happy New Year!!!

Today is the first day of a new year, a new decade even, and I'm sure there will be many changes and excitement to come our way.  I am happy and proud because I think for the first time that I can remember, I actually followed through with my New Year's Resolution last year and accomplished the goals that I set for myself.  I resolved to participate in 6 5-k's and to train for them on a monthly basis.  I had some months where I was very active, and others where I was not so active, but overall I excercised on a pretty regular basis and I am sure that my heart is healthier this January 1st than it was last January 1st.  I even stretched my expectations of myself and did a 10-k and a half-marathon. 

I wish all of you, my friends, my family, and anyone reading this blog, a happy, healthy, and prosperous new year. 

Never A Dull Moment

Tonight we are all enjoying some much needed quiet time just doing not much of ANYTHING.  Lorenzo and Beau are putting together their new remote control model airplane and Nicholas was "helping" and decided to stick a piece of foam up his nose.  I tried getting him to blow it out; didn't work.  I tried to use tweezers; didn't work.  Finally I got some of my dental instruments and was able to pick it out of there!!!  If that didn't work, we might have found ourselves on the way to the E.R.  I really didn't want to step a foot in another hospital so soon!

I realized that I didn't really explain what the doctors decided on the last day at Stanford.  They had done that last echo and it appeared that the gradient was still around 30mmHg.  Dr. Hanley thinks that the number is probably higher, but because of the bandages they could only get it to show up like that.  Also, as we wait for at least a few months, Nicholas will grow and the band will stay where it is, naturally creating more of a restriction for his left ventricle.  We go in tomorrow to our local Pediatric Cardiologist for a post-op follow up.  I will let you know how it goes.

By the way,  I hope you had a very Merry Christmas! 

Home Sweet Home

We are home.  It feels so good to say that.  We slept in our own beds, ate at our own table, and watched our own t.v. The simple things in life are what make us happy.  Sienna rememberd us (I was concerned that she wouldn't recognize us after being gone for 8 days), the big kids had the house all ready for us to come home to, and my mom was baking up a frenzy of Christmas candy in the kitchen.  Ahhh, it feels good to be home.  And all in time to celebrate this special time of the year together.

I would also like to thank everyone following the blog for your concern and prayers during Nicholas' surgery.  We have started this journey and still have a long ways to go.  But knowing that Nicholas was in the prayers of so many people, I never had a doubt that he would do well and heal quickly.  So thank you from the bottom of my heart.

Going home!!!

We stayed yesterday after checking out of the hospital so we could all have some much needed rest; we are getting ready now to leave the very gracious Ronald McDonald House.  We are just loading up the car and I will post updates as we go...

Can't wait to see the other kiddos!

Day 2 Intermediate ICU

We are still in the Intermediate ICU; we had a chest x-ray this morning and they determined we could remove the chest tube.  The team came shortly after and pulled it out.  It didn't seem to bother him much, so it wasn't too big of a deal for him.  They also repeated the echo this morning and they determined that the gradient on his Pulmonary Artery is right around 30mmHg.  We started at around 22mmHg, so there is a little improvement, but not the kind of restriction that would really force his left ventricle to pump hard and train it to take over the systemic function down the road.  We are waiting for Dr. Hanley to look at the information and make a recomendation.  We are looking at two probable choices: 1: re-band before we leave, or 2: leave and allow Nicholas to grow into the band.  This makes me feel really, really emotional.

Nicholas had a good day today.  He got to go on a WALK!  He looked like he wanted to run and jump, but thankfully we had a good hold of him and he didn't topple over or anything!  He had a few exciting visitors today, too.  Some firefighters came this morning and were handing out toys. Nicholas got a new fire truck that makes siren noises!

We also got to go to the "Forever Young Zone" and Nicholas got to meet two players from the San Francisco 49'ers! Nicholas received a Build-a-Bear from #40 Chris Maragos and he got his picture taken with #66 Eric Heitmann.  What a neat thing for these guys to do!  I think I saw a news camera from NBC, so it wouldn't surprise me if Nic is on the news tonight!

I can only hope that Dr. Hanley will know EXACTLY what we should do.  This is an emotional roller coaster and I want to get off!!!