The Journey of a Sweet Little Boy and His Special Heart

Tuesday, November 16, 2010

I had an interesting cycle class this morning.  Who knew that riding a bike could make you emotional-then again when you are tired it doesn't take much.  Thank goodness I was sweating so much that you couldn't tell the difference between my tears and my sweat.  I pushed my class harder than I have pushed them in a really long time today.  My poor class!  As my legs were burning and my lungs were screaming at me to back off, all I wanted to do was push harder.  The stress and anxiety of the last few weeks found its outlet.  I motivated my class to keep working and push through the workout because they COULD.  They have these amazing bodies that are strong and allow them to do this- so don't you dare stop pedaling when it gets a little uncomfortable!  The whole time in the back of my mind the thoughts behind the emotion was, "Will my little baby EVER know what its like to work like this?"  
I had these same thoughts the other day when I took Ashlyn and Tanner to "Bouncing Off the Walls."  By the name of the place I'm sure you can imagine what it is, but I have pictures to demonstrate!  They were crazy jumping in the bounce house, going down an INSANELY long slide.  It was so fun watching them have fun together and play until their faces were bright red and they were exhausted, but I couldn't help but wonder how Logan would fit into the mix.  Will he ever be able to play like that with his siblings?  Will I ever dare let him play like that???  What limits will his little heart put on him?

I guess in the meantime I will help him feel as "normal" as possible, and do what his siblings do.  He loves Halloween candy just as much as Ashlyn and Tanner... only for different reasons.  They all make such a fun crinkly noise!  His favorite thing lately is delving into the bowl of leftover candy (I haven't thrown it out yet because it keeps him so entertained).  I think he thinks he is eating big boy food too.... we have him fooled!  If he only knew what it tasted like with the wrapper off!

Thursday, November 11, 2010


I knew when I woke up this morning that today would be different.  (That is if you call it waking up, I'm not sure if I ever slept last night.  I spent the night on Logan's floor and in between holding him and rocking him in his carseat we finally made it to sunrise- darn congestion.) 
I was reminded AGAIN today that things happen when they are suppose to happen, and I can't always see the bigger picture.  We were given a little glimmer of hope today from a doctor at CHOP (Children's Hospital of Philidelphia) that there might be a better procedure for Logan's heart.  So I was able to walk around with a little less weight on my shoulders today.  It is too soon to make any decisions, but it feels good to have another option.
So today did end up being a little different.  I don't have to go to bed frustrated that we didn't hear from any doctors today. 
We also heard back from Primary's, but that update is for another day.  We have a lot to figure out.  Once we hear back from Stanford we will start making decisions.  In the meantime this picture will make you smile of my little guy.  I found this picture on the camera - Brad took it the other morning when they were hanging out!

I'm not sure if this is a good thing, but Logan LOVES watching movies.  I needed to get the laundry folded so I put on a Baby Einstein movie for him and he was glued to the movie for 15 min!  Look how big he is sitting up all on his own.

Monday, November 1, 2010

What's New???

Not much.... we are still waiting.  Sometimes I feel like all I do is wait around for doctors to call.  We have heard back from one doctor and we should hear back this week from the surgeons that we are asking for their second opinion. We were warned that sometimes getting a second opinion can make you more confused... and confused I am.  But I want at least 2 doctors to agree on the same thing before I send my son in for another major surgery.  I also want the MOST optimistic solution for my little guys heart.   
Logan still looks great.  Talking with the one doctor he did tell us that Logan already has slight Pulmonary Hypertension.  We have looked at his Oxygen Saturation levels being high as a good thing because he hasn't had to be on oxygen, but the downside of that is that his lungs are flooded with too much blood.  So this keeps his sats high, but is what causes the pulmonary hypertension.  He is also sweating like crazy when he eats and sleeps.  I finally got a hold of his doctor today and he increased his Lasix so hopefully that helps with the sweating and the excess blood in his lungs. 
Logan has been a little stinker lately at night.  He is waking up WAY too much!  And with heart babies it's not a simple let them cry it out solution, so we have had a challenge on our hands.  Some nights I just end up sleeping in his room on the floor because it is easier than getting out of bed and walking in there every hour. 
We have also been trying rice cereal to help keep him full longer, but he HATES it!  It doesn't matter if I make it with breast milk, formula, or water.  He spits it out and then clamps his mouth shut!  We even tried the kind with bananas in it.  He is so stubborn!
So not much news now, but HOPEFULLY this week.  I don't think my anxiety levels can stand another week of waiting by the phone for doctors to call.