One last post for 2011...

I hope everyone had a Merry Christmas and a Happy New Year!!  Looks like this will be my last post for 2011.  Wow!  Hard to believe another year has flow by!  Not too much to report since my last update.  We picked up Atticus' new leg braces, and he's doing so much better walking with the pivoting ankle joints!  He's even started learning how to turn his walker, instead of just going in straight lines!  His new glasses are sooo cute!  He looks like a little Alfie from "A Christmas Story"! Lol!!  Thankfully, Atticus doesn't have to wear his glasses all the time; just when he's working with his OT.  They really have made a difference though.  He's having a much easier time being able to match up shapes, or string beads, etc. 

We had a great Christmas around here!  Atticus got several new books, some new clothes, and of course, some new toys!  He really likes his little scooter his Nana gave him.  It has a bouncy ball under the seat, so he can bounce on it as he rides it (which is REALLY good practice strengthening his legs!), and it squeaks and squawks every time he bounces!  He also got a new puzzle that he loves, and a new Cookie Monster "MP3 player".  It's so cute...he turns the knob, and it plays 3 different songs.

I finally took all the decorations down today.  Atticus was not pleased when I put him in his crib while I disassembled the Christmas tree.  But 1 broken ornament was all Mommy needed before I decided he could spend some time in his bed playing with his new toys!  Lol!  Sandy decided to crawl in and keep him company while I wrapped all the breakables.  She's such a great helper!

I'd been lying if I didn't confess that I've mentally begun the countdown until Atticus' pre-Fontan Cath.  I've been trying not to think about it too much, but I've already begun to scrub the house in preparation for my leaving like a pregnant woman who is nesting!  I guess getting everything in order here is my OCD way of trying to prepare myself mentally for what's ahead.  A something which I have absolutely no control over.  My brain is already playing out scenario after scenario, like what if they decide he needs the Fontan ASAP?  What if we don't have it for another month?  And the really scary, what if they decide Atticus doesn't qualify for the Fontan??!  What do we do then??  I don't know how people without a faith go through something like this.  It's too much sometimes.  I'm so very thankful for a God that I can share my problems with, and then let Him handle them.  It doesn't stop my mind from running through all the upcoming "what ifs?", but it does help me not to loose sleep over them.  I've said it from the beginning, and it hasn't changed now; I know that God has a plan for all of this, even if I can't see what it is right now.  I'll keep trusting in Him, and keep asking all of you to "Keep on prayin'!".

We finally have a date....

Hello everyone!  Aren't you proud of me...I'm updating again! Lol!  Well, like I said on the last post, Atticus has had quite the round of check-ups this past month.  We visited our Orthopaedic doc, Dr Locke, who gave us a new prescription for leg braces.  He and Atticus' PT want to change them up a little (and he's outgrown his old pair) so that the right leg has a hinged joint at the ankle to make walking easier, and just a support for his left foot to keep him from rolling it inward.

We also had a visit with our Opthamologist, Dr Cheeseman, who also finally prescribed Atticus a pair of glasses.  (Poor guy!!)  Atticus is ever so slightly near-sighted and has a very slight astigmatism.  Dr Cheeseman said that normally, he probably wouldn't even recommend glasses, but since we had noticed that Atticus was having a little trouble with some of his fine motor skills (ie he would be just off of the hole when trying to thread bead on a string), he went ahead and gave him a prescription.  We've gotten them ordered, but it'll still be another week or so until they come in.  I'll post pictures when I can!!

We also had an appointment with the Pulmonologist, Dr Brown, where we got some great news!!  Dr Brown said that Atticus' lungs continue to sound great.  He even decided to begin weaning Atticus down off his dosage of Sildenafil!  Atticus had been on the same dosage levels since he came home from the hospital, so Dr Brown decided that Atticus is big enough where the dose probably isn't doing much for his size now.  He told us that we could slowly wean down from 3x a day to 2x a day.  If that goes well, after a month, we can wean down to only once a day!  Then after another month, down to nothing!!  Hooray!!  I'm really excited that I only have to give it twice a day right now, because the 3rd dose had been the 1AM medicine.  That means that I can actually go to bed at a decent hour now!!  YAAAAAAAAY!!  The extra sleep has been SO nice! :)

And of course, the big appointment of the month was our visit with Atticus' cardiologist, Dr Williams.  Dr Williams was very happy with the sound of Atticus' heart and all of his stats.  Atticus is up to 26.3lbs and 34 inches long.  (He's my big boy!)  Dr Williams has decided to go ahead and get the ball rolling towards Atticus' Fontan surgery.  We actually just got the phone call from the hospital today to set up the next step, which is a Cath procedure to test the pressures in Atticus' heart and lungs.  They have to do this pre-surgery cath to make sure that Atticus is a candidate for the Fontan.  If the pressures are too high/too low, they wouldn't be able to do the Fontan.  (Which would really stink!!)  So basically, how soon Atticus will have the Fontan surgery will depend on what the docs/surgeons see when they do the Cath.  Right now, we're scheduled to go to the hospital for the Cath on Jan 11, 2012.  So as always, keep on prayin'!  Please pray for good news and good health in the meantime!  I'll continue to keep everyone updated while we wait! :)

Atticus' 2nd birthday!!

The Birthday Boy!!

Hey everyone!  Wow, so it's been a reeeeally long time since I last updated my blog, and there has been so much that's happened.  Be prepared; this is going to be a long blog post! 

Obviously, it's been a big day here in our household because it was Atticus' 2nd birthday!!  It seems so crazy that two years ago today, I was meeting my 3rd child, Robert Gary Attticus, for the very first time, that it would be a week later before I was able to hold him for the first time, and that it would be another 2 months after that (on Thanksgiving Eve) before I could hold him again.  Now it seems so strange to think of all the things that we went through with him; how very close to death he was time and time again, and yet today he's active, playful, and curious.  It makes me stop and say a little prayer of thanks to see Atticus crusing around the furniture or with his walker, to see him able to eat his birthday cake this year, and for him to be able to communicate with us through sign language.  I squeeze him a little tighter and hold him for just that moment longer before setting him down to bed.  Today I've shed so many tears, but they've been tears of overwhelming gratefulness.  I am so grateful to God for allowing me these 2 years with Atticus. I'm grateful for all the doctors and nurses that devoted themselves to Atticus' care during that intial 160 days in the hospital.  I grateful for the doctors, nurses, and therapists that have devoted themselves to Atticus' care in the 570 days since we've been home from the hospital.  I grateful to all my friends and family that have given to us in so many ways financially, emotionally, and physically.  And I'm grateful to all of you.  Those that check in to see how he's doing from time to time.  Those that prayed for him, and that are continuing to keep him in your prayers.  Atticus has taught me some many things is such a short amount of time, and I'm grateful for that too.

Ok, on to some updates.  We have a big cardiology visit coming up later this month that will further decide exactly what road we will take in regards to Atticus' Fontan surgery.  Please keep us in your prayers about this.  I know that the Fontan has to happen.  There's no getting around it, aside from a transplant--and well, I REALLY don't want to have to go down that road.  But the closer the appointment comes, the more my mind starts swirling at the mere thoughts of another open heart surgery and hospital stay.  I know that I'll get through it, but just pray that I can ask all the right questions, that the cardiologist and I can make the right decisions regarding Atticus' care, and that I don't lose my mind to the dreaded "what ifs...?!" in the meantime.

Atticus has made so much progress in his therapies lately!  He is still crawling, but at lightening speed.  He's crusing around the furniture and getting bolder about how far is "close enough" to reach from piece to piece.  He's also getting A LOT better with his walker.  I usually have to actually hold the back of it just a little to slow him down right now.  He'll get going a little too fast and run himself over with it otherwise! LOL!  He's also able to bend/squat down to retrieve an item instead of having to sit down to pick it up.  And he's even starting to use his legs to bounce/jump a little when holding onto something or sitting on his little bouncy horse.

His fine motor skills are improving a lot too.  I actually think his learning sign language has helped his hands become more flexible as he's trying to learn new signs.  He can drop items into a container, retrieve them, hold multiple items in one hand, and has even learned to start scribbling with a crayon or pen!  He's doing great with the sign language.  He can do at least 20 signs, and knows several others that he hasn't mastered yet.  His two-way communication has improved so much!  He can usually let you know what he wants or needs.  He's even recently started putting 2 signs together such as "cookie monster" (his fav!), "want eat", "want (fill in toy)", etc.  Atticus will even tell me when he's ready for his nap!  (Try finding many other moms that can say THAT about their 2 year old!  I couldn't with my older two!)  I'm constantly amazed at his ability to learn and reason, to problem solve, and to have imaginary play when I think back to the fact that he had two brain bleeds.  God is so GOOD!!  Again, I'm thankful that God has granted my son the ability to over come these obstacles, and that Atticus is living proof at what God is able to do!

Atticus has also come a LONG way with his eating.  In the past year we've gone from total oral aversion and having to receive all his nutrition through his G-tube, to eating (and usually demanding!) table food.  He still has to have his G-tube right now, but we've been able to replace 1 "meal" entirely with table food, and can usually get at least 1/2 another with table food.  Everything has to be torn in to very small pieces, but I've seen Atticus polish off an entire cheese quesadilla, 1/2 a PB &J, a baby size bowl of mac n cheese, an entire baby bowl of cheerios, 6 oz cups of yogurt, etc!!  He's also recently figured out how to use a straw.  My mom bought him a spill-proof cup with a straw and he's starting to LOVE it!  He likes water best, but he's starting to come around to the occasional juice.  He doesn't usually drink more than an ounce or so, but it's major progress in our world!  I can finally see a light at the end of the G-tube tunnel!!  My only worry is that once he has his Fontan and has to be re-intubated, that we'll end up back at square one with his feedings.  I'm praying that we can get him off a ventilator within a day or so after the surgery so hopefully the effect will be minimal.  (Again...one of those dangerous "what if" rabbit trails that I'll drive myself crazy with if I don't restrain myself!)

I think that about sums up the last few months here in the realm of the Amazing Attiucs.  He's getting stronger and stronger with each passing day.  Atticus has several appointments this month into the first part of next month, so I'll try to remember to update once we've made it through all those appointments!  Thanks for checking in and as always, Keep on Prayin'!

Did you really just say.......?

Hey everyone!  Just wanted to give a quick update on Atticus.  He's doing much better since my last post.  Thankfully, we haven't had any repeats of that performance.  We had our cardiology visit on Monday, and everything is doing well.  His heart function is good, and he's up to 26lbs and 34 inches long!  Dr Williams decided to do another echocardiogram since it had been about 6 months since his last one.  Atticus was pretty well behaved during the process, but you can tell he's starting to get to the age where he really doesn't like lying still for that long.

Everything was going fine just like a normal check-up, when Dr Williams brought up the subject of Atticus's Fontan.  He thinks that after his next visit in October (a few weeks after his 2nd birthday), we should probably start the process for the next open heart surgery, with it probably be scheduled sometime in January 2012.  I'll admit that I've know that this day would be coming since I learned of Atticus's heart condition at around 24 weeks gestation, but it still hit me like a ton of bricks.  His decision was based more on Atticus's weight than anything to do with his heart function, but it still makes me panic just a little.  I can't help but think about everything we went through with Atticus during that first 160 days.  My mind starts going down all the little "what if" rabbit trails, and I have to force myself to focus on today, the here and now.  Nothing is set in stone yet, so there's no sense in worrying about something that hasn't happened yet, I keep reminding myself.

Other than that, Atticus is doing great!  His PT and OT are having to both come up with a new list of goals for him because he's managed to finally check them all off!  We've been practicing walking in his reverse walker, he's finally letting objects go inside of a container, he's starting to learn more and more signs, and he's getting more and more imaginative in his play!  Atticus LOVES the video series Signing Time.  He's made the connection that the signs mean different things, and he's fascinated.  He's learned to sign: ball, more, Mommy, Daddy, baby, book, water, sleepy, "Signing Time", eat, fish, dog, flower, bye-bye, milk, cheese, and he recognizes even more signs!  Everytime he sees a TV he starts making the sign for "Signing Time".  He even did it when we were having his echocardiogram done.  lol!  He thought the screen for the machine was a TV!

I think that's about all for now.  I'll keep everyone updated as we learn more about Atticus's Fontan.  Until then, keep on prayin!

Not the way I wanted to start my morning......

So yesterday was a pretty stressful day, and unfortunately it started very early at 5:30 AM.  I had given Atticus his last medicine at around 1:30 AM and gone to bed.  Then, around 5:30 AM, I had woken up to use the bathroom.  On the way out of my bathroom, I noticed the smell of formula.  This in and of its self is not totally unusual.  Atticus has a tendency to toss and turn in the night, and sometimes he disconnects himself from his feeding pump in the process.  So I walked over to his bed and reached down in the dark to check his connection, and felt that it was intact.  So I thought that he must have gotten the extension tube totally twisted around and actually disconnected it from his Mic-key button.

And that's when I felt the balloon, and totally went into freak mode.

For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place.  So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!

I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor.  But once I lifted up his shirt, I saw that the answer to that question was...."for too long".  The hole for the Mic-key button was almost completely closed.  As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain.  "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)?  What should I pack for him?  Thank God the older kids are spending the night at Nana's.....etc"  Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario.  I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.

I finally managed to pull myself together after about 5 minutes to get my butt in gear.  Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG.  Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride.  He wasn't in any pain and was pretty pleasant.  Thank goodness for that.  I think I would have totally lost it if he was in pain or "screaming" the whole time.

We got to MCG by about 6:30 AM and went to the ER.  We finally got through triage, and they sent us over to the Children's side of the hospital.  Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button.  The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button.  It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him.  It was torture....for Atticus and for me.  Poor Robbie couldn't even stay in the room.  He had to walk in the hallway every time they'd do something to him.  He's kinda squeamish when it comes to that sort of thing.  That, and he can't stand to watch someone make one his children cry.  It instantly infuriates him.  So he just excused himself in the hallway so he wouldn't have to watch.

Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home.  Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him.  His stomach had been empty for too long, and had just been through too much abuse.  We pulled over, got him cleaned up, and finished heading home.  He was passed out within another 5 minutes after that.  I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.

I have to say, Atticus is quite the little tough guy.  Other than being really hungry for the rest of the day, he didn't even shed another tear.  And by today, he was back to his usual schedule.  He just continues to amaze me at how resilient he is.  Thanks to everyone who prayed for us yesterday during all the craziness.  I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all.  That alone was an enormous lift off my shoulders.  I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency.  Ok, thanks for letting me vent about my stressful day yesterday!  As always, keep on prayin' for us!

Latest update on Atticus

Hello everyone!  Atticus is doing great, and is certainly coming into his own!  There still isn't too much to report as far as changes to his medical routine.  He continues to make progress, his heart function is still holding up well, and he is getting stronger all the time.  He is continuing to pull up on everything, and is has even started cruising just a little bit!  Oh, and even though he's only 20 months old....he has already begun the dreaded "terrible two" stage.

Ah yes....the terrible twos.  It's really a misnomer.  All my children have started somewhere around 18 months....and I'm still waiting for my 5 year old to stop! LOL!  Atticus, though, seems to have gotten the worst case of it.  I suppose understandbly so.  He has a more limited vocabulary due to his hearing loss and vocal chord damage, so he tends to get frustrated more quickly.  I felt bad that he really had no way to express himself, so I got in contact with the folks from the School for the Deaf & Blind, and we have finally begun learning American Sign Language!  We had already begun to learn a few signs with Atticus' speech therapist, but I wanted a more in depth study.  I've already resigned myself to the fact that he'll probably need yet another surgery, this time on his vocal chords, at some point in the future to repair them.  I also know that this won't happen until after his next heart surgery, since he'll be reintubated for a while, and I don't want him having to be 3 or 4 years old before he's able to have a way to talk.  So, ASL it is.  Sandy and Gideon have really loved it as well, and Atticus has already started making a few of the signs (although not consistently) for Mommy & Daddy!  I'm just hoping he can pick them up fairly easily.

That's really about it for now.  He's doing the usual naughty 20 month old stuff....trying to get into the cabinets, destroying anything he can lay his hands on, and getting into everything he's not supposed to!  Hehe.  He's also becoming more and more aware of everything around him, and exploring constantly.  He's getting (slightly) better about eating actual baby food, and is even willing to let me touch my "big people food" to his lips so that he can smell/taste it.  He won't eat any, but he'll let you touch it to his tounge so he can taste it.  Just saying.....french fries defy all barriers......haha.  I'll be sure to update more later....especially if he starts doing something else new!  :)  As always, please....Keep on prayin'!

A very Happy Memorial Day!

Happy Memorial Day everyone!  Just checking in with what seems to be monthly updates.  Not too much has happened since my last post, but I'll try to remember to include everything that has happened.  Atticus is continuing to do really well, and is just crawling all over the place.  He even gave me a special present today.....he stood up ALL BY HIMSELF!!!  Hooooooorrrrraaaaaay!!  He even managed to do it a couple of different times!  That makes me one happy mamma!

Not too much has changed as far as the doctors all go.  His cardiologist continues to be happy with his progress, and is still waiting for the 30lbs mark as the indicator for the next surgery.  On a brighter note, we just visited his pulmonologist last week, and he said he thinks we can start trying to wean Atticus down on his O2 levels at night, with the eventual goal of getting him off O2.  (yay!)  No real changes other than that.

Atticus has also been doing really well on his feedings, and is starting to be more consistent with eating more than just a few bites, and we've even managed to get down a whole jar of baby food!!  Whoo hoo!!  He's also learning mores signs and is getting better at using them when he wants something.  He's just getting to be such a big boy!  When he stands, its amazing how tall he really is.  I'm so used to seeing him in the sitting position, or crawling, that when I see him stand it just shocks me to see how tall he's actually gotten!  Thanks for continuing to keep us in your prayers!