Wednesday, December 22, 2010

Miles of Smiles

When all is said and done, today can be considered one of those good days.

Down Right Living: Our child has Down syndrome

Last night I pulled an all-nighter (Yep! Not a wink of sleep!) trying to finish Christmas presents, working on GAINs (assessments) for my sister, taking care of Jacob, and even trying to squeeze in a little bit of house cleaning along the way.  But today was the day we got to spend with the cardiologist going over Jacob's progress and discussing his heart surgery.  This was supposed to be a Dr. appointment that would last at least 2 hours long, so if I was going to get anything done it had to be while the family was sleeping. 

Our appointment with the cardiologist had been set weeks ago and we had even received a packet in the mail reminding us of our appointment, which I diligently filled out in anticipation of our visit. I started getting Jacob ready for the appointment at around 6:30 a.m. - bath, re-dressed his ND tube, got him dressed, packing his diaper bag, etc.  When we showed up at 8:30 a.m. the first thing out of the receptionist's mouth was, "We have you scheduled for 11:30 a.m.".  I looked at her and said, "No.  You have us scheduled for 8:30" and tossed her the paperwork, complete with the scheduled time on the front page, to her.  She looked at it and said, "Oh.  Hmmm".  Apparently they had 'lost' our appointment.  So, they had to scramble to find a way to fit us into their day.  We were told, "You're lucky! The doctor's next appointment is running late so we can squeeze you in!"  Um, no.  Apparently these ladies had no idea what kind of bullet they had just dodged.  I had not slept the night before, I had not eaten yet, and I was on my period.  Strike 3.  You're out!  Out of patience, that is.  With those three factors in play I was in noooo mood to play nice this morning and those ladies were darned lucky they didn't try to make us go home (which is a 30 minute drive, by the way) and have us come back in a few hours. 

So, we sat down and waited to have Jacob's name called......and waited....and wait...and waited.  45 minutes later, they finally called us. We got to weigh Jacob and he was up to 9 lbs 13 oz!!!  Just a few more ounces to go until he reached his 10 lb goal! The nurse did an EKG, which took longer to put all of the stickers and monitors on than it did to do the actual test!, took his blood pressure, measured his oxygen levels, and asked about his medicines.  Then we waited....and waited.....and waited some more for our doctor. FINALLY, he came into our room and sat down to talk to us about Jacob.

He asked us about his medical history and hospital visits, problems with feedings, whether he was getting the RSV shot, etc.  He asked us what our expectations were with the heart surgery, etc. He explained to us that he believed that Jacob's feeding issues were not going to go away any time soon and that lots of people usually have a surgery to close off the esophagus and put a feeding tube in through his stomach before they do the heart surgery, which is a much more permanent solution to his reflux.  I told him that I'd been told that Jacob would grow out of his feeding issues eventually and that I was prepared to wait it out rather than do a surgery to put a tube through his abdomen into his stomach permanently.  He was not too keen on this idea stating that he is an impatient man and that he doesn't like to wait for things that take too long and said that we could probably wait 6-8 weeks and if he isn't improving by then we should get the surgery done.  I still was not sold on the idea of creating a permanent solution to something that may resolve its self in time - especially a solution that resulted in feeding Jacob through his stomach for the rest of his life.  So, I'm opting to be very very patient with his feedings.

After much discussion, the doctor convinced us that it would be in Jacob's best interest to wait another 4 weeks before he gets his heart surgery.  So, we are tentatively scheduled for his heart surgery the 3rd or 4th week of January to do Jacob's heart surgery.  We will be going back to see a cardiologist in 2 weeks to choose a hard date and meet with a surgeon.  And the guesstimate that Jacob will be back in the hospital for about 2 weeks for recovery.

He warned us that this heart surgery would not make Jacob any less fragile and would probably not fix any of his issues. It was only going to fix his heart.  Hmmm.  That's not what he said at our initial visit.  I guess at this point nothing should surprise me and I should take everything with a grain of salt.  So, that's what I'm going to do.  Whether it fixes Jacob's other issues or not, this surgery is still a necessary part of his development and an essential step to his progress. So we will go forward with it.  If it helps with his other issues then BONUS! If not, we'll address each issue after he recovers from his surgery.  After our 20 minute conversation, he changed Jacob's prescription by increasing his Lasiks to .5 mg 2 times per day and sent him down to get an X-ray to make sure his heart hadn't grown too much.  By this time we'd been at the doctor's office for more than 3 hours and had a total of 30 minutes face time with the doctor and his staff.  Ugh.

On the up side, while we were waiting at the cardiologist's KC and I got to watch Jacob laugh in his sleep. It was sooo cute!

Then, later this evening we were having our nightly 'interaction' time where I'd smile, talk, and sing to Jacob to help him interact and begin working on mimicking the facial expressions he sees from me.  Lo and behold, I was grinning and talking to Jacob and he began to give me half-smiles right back at me!  Not just one random gassy smile, but several deliberate half smiles that just melted my heart! I wish I'd had my camera with me!

So, even though my day had a rocky start, I can definitely say that it ended with miles of smiles that makes all the other crud just melt away to the back of my mind.  It's the moments like that which remind me of why it is that I chose motherhood over the military and why I don't regret a single minute of that decision!
 Help us help others with Down syndrome.  Donate today!
Help us help others with Down syndrome.  Donate today!

Monday, December 20, 2010

Baby Steps - We'll take em'!

I think we've hit a record....2 days and still no emergency room! Woo hoo!!!! ;)

OK, maybe not a record, but it's been a nice, quiet couple of days filled with baby steps of improvement. I'm sure that this is in no small part due to the fact that our dear friend Melissa (who, by the way has 6 children of her own!) took all 4 of my kids during they emergency room visit (yes! She had 10 children at once!)  and proceeded to keep three of them for 2 days! That left us at home alone with Jacob in a nice, quiet, stress-free house for 2+ days.  I have to say it was nice.  And I think the lack of the usual chaos that usually ensues in  our home seemed to make a difference on baby Jake as well.
Jacob Allred: Down Right Living, after his open heart surgery
Jacob is not only taking 26 ml an hour on his ND tube, but he's taking 1 oz. of formula every three hours (without puking!!!), and even nurses occasionally (also without puking!!).  And to top things off, his gagging has gone down considerably the last couple of days. Now, if we can just get him to hold on a few more days!

We go in to see the cardiologist on Tuesday at 8:30 a.m. to (hopefully) get a concrete date on when his heart surgery will occur.  And, if he has gained as much weight as I think he has the last few days, he will show up at this appointment at 10 lbs +, which is our goal weight for surgery.  Then, after the 2-hour cardiologist visit, we'll spend some time with the Pediatrician regurgitating what the cardiologist told us and coming up with a plan of attack that will address all of Jacob's issues, who will take care of them, the sort of progress we are hoping to see, and what we need to do to see that progress.  I have a feeling that we will be rattling more than a couple of cages on Tuesday.

All in all, I'm excited for Tuesday.  Jake is beginning to improve physically, I think he's met his weight goal in spite of the feeding set backs, and he's even beginning to sleep on his own (i.e. not on my chest 24/7) for a few hours at a time.  It is sooooooo nice!   :)

Baby steps.....we'll take em!

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