8 weeks Post Op

Hanging out at the beach condo. 

It's been about a month since I last updated, please take the no news as great news! Keller has had a couple of appointments, I mean that-two appointments! One for his heart and one to get a new g-tube. We have made more than two trips to the doctor, one was due to my paranoia (he's fine!), once for a cold (did you catch that? a doctor trip not a hospital trip) the other for his Synagis shot. We have also been able to get to church on a Sunday twice, go the the beach as well as a few other outings.  

Life, lately, is looking more normal.  He has so much more energy, he loves to watch Norah, hang out with Daddy, smile at Mommy, give kisses, make mouth noises.  He is learning new tricks all the time. He gets really excited at night and talks loudly and flaps his blankie.  Or he will smoosh it in his face and yell through it all the while scooting up in the bed.  He's quite the character.  He even has learned to like the Bumbo seat. But the biggest change this month is his growth! On October 17th Keller weighed 11 lbs, yesterday at his appointment he weighed 13 lbs 9.5 oz! That's 2.5 pounds in a month. He is getting some very chunky thighs and we love it! Daddy calls him a "chunk-a-lunk".  He actually has passed Norah's size when she was 6 months.  Who knew our heart baby would out grow our healthy one? 

13 lbs and 9.5 oz of pure sugar!

At his last cardiology appointment the echo showed that he has two jets of blue blood that leak back into the atrium.  The doctor described it like putting your finger over a garden hose.  The tiny holes the blood is shooting through make a larger spray on the echo.  This gives them a better idea of what's going on in that little chest.  It does not rule out a second surgery.  Keller's body will tell us when he needs another surgery.  He will get to point like he did before, he will stop growing or his echo will tell the cardiologists that it is time again.  

Keller is now on only five medications and we are hoping to get him down to four very soon.  He looks so good and I catch myself forgetting where we were just a couple of months ago.  The biggest tell-tale sign that he is not "normal" is his feeding tube.  I have said in the past that he is fed around the clock.  By that, I do mean, 24 hours a day he is attached to his feeding pump and bag.  He currently gets 32mL of formula infused into his belly every hour of the day.  We are hoping soon we can start the process of consolidating 3 hours worth of feeding into 2 hours and then eventually 4 hours worth into 2 hours and so on until the point where he is eating every 4 hours like most babies do.  It would give his gut a break and give him some freedom to be carried room to room and go out in the stroller without toting his book bag full of formula.  The lady who changed out his g-tube yesterday gave me some clues as to how to start this process and once we make sure cardiology is okay with it we will probably start.  

Keller has an evaluation with an occupational therapist next week.  She will come to the house and see exactly what Keller's needs are developmentally and with his swallowing.  We feel like he will catch up developmentally fairly quickly.  Just this month he has started using his arms, turning his head to new noises, squealing, laughing, wanting to hold up his upper body, grabbing his toes, clicking his tongue.  I feel like re-learning to eat is going to be the slower process.  He does take a pacifier but gags when I try to let him suck milk through a bottle top.  

All in all, everything is pretty good around here. Life is busy this time of year for use just like everyone else.  I am currently planning decorations for church, a birthday party, and a brunch.  It's hectic, but it's a sign as to how far we have all come. 

Thank you for checking in on us.  Thank you for continued prayers.  God is good and now He's just showing off! 

Here are some pictures - because sometimes a pictures is actually worth a thousand words. 

It's so cool to see them look at each other with amazement.

Learning how to fix cars and other manly things with Daddy. 

Our sweet sweet babies.