The Journey of a Sweet Little Boy and His Special Heart

Thursday, April 28, 2011

San Diego

At Logan's last cardiologist appointment the doc said take a vacation... so we did!
I needed sunshine, and Logan needed somewhere close enough that we could drive.  So off we went to San Diego.  Logan was a pretty good little traveler.  And his little heart thrived at Sea Level.  He was off oxygen the entire time, even at night (sats around 84% asleep so probably even higher awake- he just never held still long enough for me to get a good reading when he was awake).  
 
It was overcast most of the time which ended up being a blessing.  At first I was really bummed about the weather, but then we saw how sensitive this little guys skin is, and I am so glad it wasn't blazing hot the whole time.  With 50 SPF sunblock applied throughout the day and a hat at all times he still got sunburned.
The cutest little tourist you have ever seen!
I got my CHD heart necklace right before we left.  Logan loves holding on to it (and loves to try and get it into his mouth).  I know it is no secret that I absolutely LOVE this little boy.

He perfected the art of waving (beauty pageant style) and clapping while we were there.  He loved waving at all the people and when we would clap during the shows he would grin and look around wondering what he did that was so cool (we always clap for him when he does something exciting).  He would light up every time we clapped and would start clapping too. 
Ashlyn and Tanner had such a great time and didn't ever stop going until they crashed in bed every night.
Traveling with a baby is never easy- a baby with health issues and a paranoid mom is even harder.  Thank goodness we had Grandma and Grandpa to help out.  We couldn't have made it without them.  They SAVED us and saved our kids from us.  Ashlyn and Tanner stayed in their room with them so when Logan was up every 2-3 hours during the night he didn't keep them awake (yes, he really was up that much... little stinker)!  And they LOVED being with Grandma and Grandpa.

Logan LOVED the beach.  He would scoot around in the sand and it was priceless watching the sheer joy on his face.
Check out his "bum print" behind him.  He is still scooting on his little bum everywhere he goes.
One happy kiddo!
It was great to get away and feel somewhat "normal"- for us and for Logan.  I know as Logan gets older we are going to have to find that delicate balance between protecting him and letting him live a normal life.  It was great to get away and make so many great memories as a family.  I sometimes forget that the last year has been just as hard on Ashlyn and Tanner as it has for the rest of us.  They needed this vacation and attention probably the most. 

Sunday, April 3, 2011

Diagnosis....

SPOILED! 
We had a week of doctors appointments- pediatrician and cardiologist.  What is the consensus.... Logan is SPOILED!  I like to look at it as overly LOVED!  They both told me I need to let him cry a little for both of our good!
We had GREAT visits with both doctors.
The best news of all.... We are oxygen free during the days now.  His Cardiologist was so happy with his growth and progress he really wanted him off his oxygen during the day (he is still on it at night and while sleeping).  Brad and I have been weaning him slowly (he was down to 1/8 Liter).  I was extremely nervous to take him off it completely though.  I badgered his doctor with SO many questions and concerns.  He kept reassuring me that Logan was doing SO well, and that his saturations being in the 70's is okay and won't result in brain damage (calling me paranoid is an understatement).  Logan has done extremely well off the oxygen.  His color is staying "pink" most of the time, and he is so happy to not have a hose to hold him back from anything.  He is moving all over the place.  He does the butt scoot, and is so efficient at it that I wonder if he will ever crawl.  I have spent the week baby proofing the house, but have yet to "Logan" proof it.  This kid knows how to find all the "no no's."  Have you ever seen a kid lick the electrical outlets?  Mine does!  I thought most kids just tried to stick things in them, not full on lick the wall they are on!  He is obsessed with chords and plugs and anything dangerous.  I think I am in for it with this one!
He had a full Echo at his appointment.  I love that his doc won't sedate him if it can be avoided.  We had to pull all the tricks out of the bag to get him to hold still, but we made it. His heart looks as it should- there is no fluid build up, enlargement or excessive scar tissue.  This is all great news.  His next Echo won't be for 6 months.... YIKES.  That made this mama a little nervous.  But Dr. Mack said I could come visit him anytime before then if I was ever concerned.  It is mainly up to us to monitor his Oxygen Saturation and his Pediatrician will keep a good eye on his Liver to make sure there is no enlargement or change.
At his visit with his Pediatrician he weighed it at a whopping 19 lbs (25th percentile) and was 29 1/2 inches tall (85th percentile).  Growing like a weed!  His ped. told me it is time to let him cry it out at night- we both need more sleep.  I let him cry it out ONE night- it was so, so hard.  He cried for hours, and after that I finally gave in.  Don't they say red heads are extra feisty and stubborn?  If so, Logan fits the stereotype!  I did give in after those 2 very long hours, but ever since he has been sleeping SO much better.  We have had one night of him sleeping through the night (8 solid hours- although I was still a mess checking on him to make sure he was alive).  He is now averaging about 6 hours- that I can handle! 

Check out those sticker free cheeks... they are the absolute BEST to kiss.  And his latest trick is throwing his arms up in the air when you say "toss it"!  (And notice the one sock- he is always pulling them off to eat them)!
 As I took his picture he scooted all the way to my feet and is now trying to get me to pick him up.  Who could resist (and boy does he need a hair cut)!
Life is good for us, we are truly blessed.  We think about our little angel friend Logan every day.  It is hard as a heart mom not to let things like this paralyze you.  Reality is not always what I want to deal with.  I have been reminded so much these past two weeks how precious life and loved ones are.