Friday, October 25, 2013

It's a beautiful life.

Those who follow me on Facebook will have noticed a passionate post in the last week about people who like to touch my baby.  It seems like people are drawn to Jake - those who know his story, and strangers as well.  To say that it drives me nuts is putting it mildly.  I know everyone is well intentioned, and most likely do not realize the possible implications of touching a heart baby without washing their hands, but knowing the possible complications it makes me wild when someone reaches for Jake.  And now, he has his first cold.  Today was day 3 of the cold, and the worst one yet for him.  My poor baby sounds awful, but he's still managing to be his happy self 90% of the time.  Jake was examined by his cardiologist today, and she was really happy with how he was handling the cold - he wasn't in distress and his oxygen saturation was 88.  Also, he's now hit 16 pounds - way to go big guy! Jake also had a echo today, although he couldn't be sedated because of his cold and he spent a good part of the echo trying to show the technician how to do her job by pushing the probe around himself.  The echo shows that nothing has changed in terms of his left pulmonary artery, so all is well in our world today.  Jake had bloodwork done to check his enox levels, but I got a call this afternoon saying that the lab couldn't get a result from the bloodwork so it has to be redone on Monday.  Poor baby Jake.  He gets too many needle pokes.

In between appointments today I stopped in to visit the ladies at the Maternal Fetal Assessment Unit, they were such a huge part of this journey through Jake's diagnosis and my pregnancy.  It was such a familiar feeling to walk down that hallway like I did 3 times a week during the last part of my pregnancy.  Jake must have had a thousand pictures taken in the MFAU room while he was still in my tummy.  It was really nice to see their smiling faces, and to hear their positive comments about Jake's development.  

This afternoon I was driving home and rounded a corner and saw this...

The first thing I thought was how beautiful the rainbow was.  The second thing I thought of was the significance of a rainbow in the bible - it's the sign of God's promise.  Literally taken, it's the sign of God's promise never to flood the whole earth again.  To me today, it was a profound reminder of God's presence in my life - and of the precious gifts he has given me in the form of my two children.  I pulled the car over to the side of the road, took this picture and then drove the rest of the way home feeling light and full of hope for my family's future.  I don't know what tomorrow brings for Jake or Georgia, but no one else knows what tomorrow will bring either.  So for today, I'm trusting and believing.  God is good, and He has proven himself over and over in my life and my miracle boy's life.

Halloween is right around the corner and Jake has the perfect costume.  I can't reveal it yet though - check back on Halloween to see what my two little monsters are wearing :)

One highlight of our visit with the cardiologist today was being told that I could take Jake to a program at my Mom's church that I have been wanting to  join - Grow With Me.  Before Jake's Glenn surgery this would have been impossible because of exposure to germs and possible infections.  Now Jake is still living in a bubble, but the bubble can get a little bit larger because his heart is stronger.  Tooth number 2 is almost through, it's so close that I wouldn't be surprised if it was through by tomorrow morning, especially given the way his gums are bothering him tonight.  On the eating front, Jake is going to be starting in on meats this week.  We have worked our way through the types of cereal, and next on the menu is meat.  After that will be veggies and finally fruit.  It's so exciting, but also nerve wracking because I want so much for him to eat.  To eat enough to get that feeding tube out.  It's not an impossibility, but it will be an enormous challenge for Jake and for me.  Please focus prayer on Jake's oral feeding - I want to avoid the need for another surgery in the form of a G Tube for his stomach.  
I'll leave you with this beauty shot of my little pumpkin and his little pumpkin.  It's a beautiful life.

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