There is a whole lot of cute any time you have a baby around. But seriously... *that* is just ridiculous.
So far so good though. Jacob seems more fascinated than annoyed with his new specs. Pulling at them a little bit, but more out of curiousity than from wanting them off his face. One of his favorite tired moves is to rub his eyes and last night it was bothering him that he couldn't - but that was about it for frustration. We'll see how it goes.
He clearly (no pun intended) is very fascinated with everything around him and you can see the little wheels turning as his brain works to reprocess familiar things that now look a little different. That precious baby amazement happening all over again. Fun!
ps....we are working on a heart surgery update... will post when we know more.
Home again! Cath went well. No hiccups and they got all the information they needed. By 6 pm Jacob was washed up, in fresh clothes, being fed, and playing with his favorite toys in the comfort of his own home. Tired, yes. A little cranky, sure. But really good (amazing Jacob). Big sigh of relief.
You would think all that good information from the cath would lead to a clear answer on next steps ....um, that was the plan after all. But no. Heavens no. Jacob continues his pattern of very non-committal test results. This pattern of grey area test results started before birth so why should we expect it to change now? The good news is all the results show Jacob's heart and associated appurtenances (like lungs) are working pretty darn well all told (again-amazing Jacob!).
The difficult (if we can call it that) part is that none of the things they looked at are over the definitely-needs-surgery threshold.... but they are all - in varying degrees - close to the threshold ... so cumulatively they probably add up to Jacob needing surgery like we thought. Final decision won't be made until the whole cardiologist team puts their heads together Friday.
My translation: If we lived in a third world country... Idaho, for example... Jacob would live a pretty good life without heart surgery. As it turns out we live *here* with some of the best pediatric cardiac surgeons in the world at our fingertips who can present a potentially much healthier and better quality of life with the heart surgery. But even they feel the need to check themselves (with their peers) and make sure that statement is really true vs. them wanting to do it just because they can.
Either way, we are all breathing easier. Cath is over. Jacob's heart is doing ok, nothing to panic about. Weather is beautiful and we don't need to be over protective about germs impacting heart procedures (at least for now) so we can get out of the house! Thank goodness, because Jacob has been just dying to go to Captain Larry's.
Cath procedure over. We are in recovery with Jacob. He is waking up well. He's covered in wires and we have to stay in observation for a few hours. Initial report from the doctor was that it went very well. They got the information they needed. Anesthesia had a good report too. So far still looks like we will be able to go home today.
Jacob was approved to have the cath done today. He had a great time playing and rolling around on the adult hospital bed in the prep room. Jason and I were both with him when they put him to sleep. We have gotten one update so far that they have the caths in place and are starting the testing/measurements.
So it looks like we are up on deck again. Jacobs sniffles are gone as well as all the other random infections (everyone knock on wood!). His heart cath is scheduled first thing Wednesday morning. I hope to post several updates during the day that day.
It looks like spring has arrived - beautiful weekend - hope yours was too! Ours was brightened by a happy healthy baby, lots of sunshine, and a new iPad. Not necessarily in that order (sorry Jacob).
In other Jacob news....although no infections should be news enough, no? No, no.... Jacob had to go ahead and learn how to roll onto his side by himself (!) and provide more news.
Love that.
Also his new specs should be in this week. (New baby specs!)
Victory is won not in miles but in inches. ~Louis L'Amour
Another blog I follow is a good, constant reminder not to forget to celebrate all the victories, big and small. Especially in the face of a seemingly endless stream of - what one might call - setbacks. Right.
To be fair - Baby Jacob is… well… a *baby*. Brilliantly unaware of time passing and all of it’s expectations. The concept setback would not be in his vocabulary. He likes to play. When he can play, he plays. When he can’t, he doesn’t. But then when he can play again, he does – with the same reckless abandon as before and no baggage whatsoever about that time when he couldn’t. (We probably should be learning something from that.)
Video backstory: For Jacob’s entire life he has been working to figure out how to make his arms work. Forever he would kick and wiggle and even throw his shoulders back and forth… but try as he might, those little arms would just swing like wet noodles. Jacob has great command of his hands and fingers so once a toy is in his hands or lap, he’s good to go. But to reach out to get that toy – not happening. To reach up – not a chance. To reach up *and* grab at the same time – forget about it. For such a long time, the best he could do was throw his shoulder wildly (although he was starting to get good at this) that would maybe be enough to swing his arm in the general direction of the toy that he maybe would be able to grasp for a moment. But to keep his arm up was always too much. Gravity would always win. His little floppy arms were definitely living up to the low-muscle-tone reputation so famously associated with his extra little chromosome.
Undaunted. Jacob hasn't stopped trying, mind you. Oh he just keeps trying. And trying, and trying, and trying, and trying, and trying. And finally... this past week....arms up! Gravity be damned.
His victory….
Sidebar about small victories - not that it's all about me. But hey - I managed to figure out how to put together that little video montage with sound effectand background music... with MY PHONE. I mean it's no gravity defying arm lifting feat, but still cool, right?!?
After what seemed like a million questions and many many examinations and a lot of smart people consulting on risk vs benefit... the big guns (the attending anesthesiologist) pulled the plug. Her words.... 'Today is not the day.'
Bugger.
Long story on specifics but the stuffy nose and a few other factors combined made her concerned about how well he would do. As it's her job to, you know, keep people alive...she wins.
Cath Redux is scheduled for March 21.
In the waiting room, obviously distraught about the whole thing.
I'm attempting a blog update with my phone (no idea how this will work).
As Murphy's law would predict, Jacob came down with a cold last night. So we spent this morning at the pediatrician sorting out whether he was well enough for the cath procedure.
Final decision - we're still on. Jacob's cold (unless it gets worse overnight) shouldn't be a problem for the cath procedure.
Will post updates tomorrow as well as we can. If all goes well, we should be home by tomorrow night.
