21 October 2011

Is It Time For Solids Yet?

Charles trying to feed Charlie his first solids.  Just kidding, nothing but good ole fashion milk for this little guy for a while.  But this is one of our many carrots from our garden this year.

Here is a pumpkin that we grew.  It sure is a giant :)


We have more than enough green onions.

Here is my weak attempt at making an orange into a jack-o-lantern.

For kicks and giggles here are some photos of Charlie.  I know that the Grandparents can't ever get enough of these pictures.

This is Charlie all bundled up to go to a corn maze.  You may notice that the bear suit is a little big for him.

Here is Charlie is his chillin' pose.  He will often sleep like this now.  (I love how he has spit down the front of his shirt and a bit of barf on his sleeve in this picture.  We are exposing the dirty little secret that I don't always change him out of his clothes if he gets them dirty.  Kids and dirt just go together, there is no separation of them.  That is why they have to get dirty right after a bath, at least that is the only time Charlie has blow out diapers.  So the key to not having blow out diapers is not taking baths.  Simple!)

I caught Charlie chewing on his oxygen instead of napping.  Thankfully we have been able to take away his distracting toys.  No more oxygen!

I took this photo to document how Charlie chews on his fingers but it turned out so funny!  This picture reminds me of the kid on Home Alone.

17 October 2011

Smiles at the Hospital and Other Pictures

Smiles at the hospital this last weekend after his test/surgery

Charlie in a hat from Charles' friends in Russia

Charlie's scars are heeling well from surgery 1 and 2

This was Charlie laying in bed waiting for sleep to hit him 

14 October 2011

Charlie's Test

Charlie had a test/surgery today for his new heart problem.  They fed a catheter into his groin vein and up to his heart to measure the pressures directly in his heart.  The suspected pulmonary hypertension was not there!  His aorta was a little narrowed and so while in there they used a balloon to open it up a little bit.  It is an absolute miracle that Charlie's heart looked amazing!  I couldn't be happier about how well today went!  Since Charlie was fairly sedated for the surgery he will be spending the night at the hospital, consequently I (Annette) will be too.  Charlie is amazing!

Thank you everyone for your prayers and fasting for Charlie I know it has helped!

07 October 2011

Charlie Laughing While He Sleeps

Charlie was sleeping one day on my chest and must have been having a great dream because he started laughing.  I took my phone out of my pocket to capture such a cute moment.

04 October 2011

Charlie's New Heart Problem

Charlie had a doctor's appointment today with the cardiologist to check up on his hear.  Below are the notes that Jan (my mother-in-law) took about Charlie's new heart problem.  His prognosis isn't the best in the world.  There is hope.  I am just thankful that I know that our family is forever and that Charlie will always be my little guy.  I know that no matter what happens that the Lord is orchastrating everything.

I will be getting a phone call from the doctor on Thursday telling me when the next step to helping Charlie will be.

Tuesday, October 4, 2011

The following is what we understand from Charlie’s doctor’s appointment today:

It was determined that he has pulmonary hypertension and that the right side of his heart is bigger and thicker than the other side.  The pressure is high in his lungs, which makes his heart work too hard (or something).  He has a flow gradient of 4, and normal is 1 (we don’t know what that means, but we’re including it in case somebody does understand that).  All of this is indicative of the fact that there is an obstruction (or narrowing) somewhere. 

If the obstruction is in his pulmonary vein, there will be nothing they can really do to fix it, and his condition will deteriorate.  A heart transplant is an option in this case but the likelihood of getting a newborn heart is not high.  If they could get one, that surgery would be somewhere else like in Boston or L.A.

If the obstruction is somewhere else (perhaps in an artery—or elsewhere?) nearby, there are medications they can try that could help that situation.  It is even possible that after being on a medication for a few years, the condition would resolve itself. 

The doctor is attending a cath clinic tomorrow (Wednesday) at Primary Children’s Medical Center.  This is a meeting in which all of the cardio people and echo people at the hospital get together and discuss patients’ problems and prioritize their care.  After the doctor talks to that group, he is going to schedule a cardiac cath test at Primary Children’s in which they will send a catheter or some other kind of monitoring equipment through the arteries in his groin up to his heart to try to discover where the obstruction is. 

It appears that the part of Charlie’s heart that had surgery on it before is looking alright.  There seems to be a bit of narrowing but nothing dangerous.  That problem has not caused this one.  It just seems to be that there was more than one heart problem.