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Sunday, October 10, 2010

Long Time, No Talk

Wow, it has been way too long since our last post! Gosh, the days really do seem to go by so fast as I would say we are now starting to figure out a few "patterns" of our new life. Not routines, no schedules, but just some of the things that seem to make time really fly by.

Jonah is still making slow progress on the bottle. We are doing more bolus feeds during the day now to give him the opportunity to feel hungry when we work on it. Also, to avoid getting too comfortable with a full belly 24 hours a day without ever having to try. He is soooo good with the pacifier, and is soooo smart too because as soon as that pacifier comes out and the bottle goes in he lets us know very quickly we aren't going to be able to pull any fast ones on him:)  We are happy to say that he is tolerating the boluses fine...after accepting that slower really is better for him. But this process is work. Every 2-21/2 hours keeps time ticking. After that we are taking advantage of the awake time Jonah has when he is happy and playful...yes, playful!! He is smiling. He is talking to us. He is getting tummy time. He is doing all of the developmental things he should be doing for his age right now.  He tuckers out pretty quick but those moments are so precious and dear to us!! In between work and play with Jonah is fitting in all of the must-do's around the house. Laundry, meals, cleaning, etc. My mom has really been the extra hands that we need to get these things done...THANKS Mom!

My relationship with the home nurse's scale, my nemesis, has officially ended. We no longer need monitoring at home and are only focusing on one weight, one scale at the cardiologists office. Long story, but Jonah had definitely been gaining weight all along and is now up to 9lbs 7oz!!! It's deceiving though, because looking at him and holding him you'd think he has finally hit double digits...but, no dice. The good thing, the only thing that matters, is that he is gaining weight at all.

Jonah had his first appointment at the pediatrician's office and with that came his 2 month vaccinations. I was really worried about the aftermath of these but Jonah handled them just fine and was never irritable or uncomfortable. One thing I am not looking forward to is a monthly injection Jonah will have to get to protect him from RSV. He will need it from Nov-April...yuck. I know it the grand scheme it is not that bad, but still...yuck:( Everyone get their flu shots??

Although we are very conscious of Jonah's exposure to the "elements", he has been able to experience life outside of the doctor's office. He made his first trip to the big city. He's checked out the local farmers market, done a little shopping. He goes to Grandma and Grandpa's quite often. Jonah has cheered on his favorite Minnesota sports teams in his appropriate sporting gear. He has been to church giving all the glory to God. And just yesterday, Jonah went to pick pumpkins with his cousin Nola! Yes, we are all loving life!!

Okay, now for the "big news" (Seinfeld fans anyone?). Jonah will have his first heart catheterization in 2 weeks. This is a diagnostic procedure where they insert a catheter into an artery in his groin and feed it up to the heart to look at pressures and blood flow. This is in preparation for the second surgery, the Glenn. Can you believe it???!!!! We are already getting ready for that! It could be done by the end of Nov. beginning of Dec. Jonah will be intubated, sedated, and observed for 24 hours with the cath. It obviously has its own risks, but we know this is the best way to determine what is going on in there and unfortunately it won't be the only one. Jonah will likely have these done as part of his life-long monitoring. When he had his Echo done Friday, it showed a slight narrowing in his shunt which Dr. Husayni assured us is exactly what starts to happen at this stage. Jonah is growing, the artificial (gortex) shunt does not. We have seen his sats drop a little bit. Low 80's has always been Jonah's normal, now he seems to hang out in the high 70's. His color still looks really good though! He's pink and he's happy...most of the time:)

And last but not least, some pictures from the last few weeks...




1 comment:

  1. Look at the little man! Gosh I love that smile :)

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