Happy Valentine's Day!!

Happy Valentine's Day everyone!!  Welcome to the official launch of The Amazing Atticus blog!  I've transferred all his archives from his Caring Bridge page.  I've decided to start a blog because it allows me a little more freedom than the Caring Bridge site.  It'll also make it easier for you guys to comment on specific posts versus having to sign in the Guest Book.  I can also upload more photos, put links onto the page, etc.  Please continue to follow along with my amazing son as he continues to grow stronger and make new strides each day!

Heart Mama's Prayer

Hello everyone!  Well, Atticus is still doing well.  We had our first dentist visit yesterday (I know, I'm slack in this area--but there's only 1 dentist in Aiken that takes our insurance, and it's an ordeal to get into their office!)  Bad news is that it looks like we'll be going to yet another specialist--likely in Columbia.  Atticus is probably going to need dental work, though this dentist didn't go into specifics because he'll leave that up to the next doc.  It's really no surprise.  Atticus has some major staining/enamel issues with his teeth due to all the meds he's been on, plus all the throwing up that he's done due to the G-tube.  Still, not what I was looking forward to.

On another note....Feb 7th through Feb 14th is Congenital Heart Defect Awareness Week.  CHD affects 1 in 100 children.  In honor of this week, I'm going to share something with you.  I didn't write it, but it certainly applies.  I decided to title it: A Heart Mama's Prayer.


A Heart Mama's Prayer:
I pray that no other parent shall have to hear those words "Congenital Heart Defect".

I pray that no other parent shall have to sacrifice time with their "healthy" children because you can't be in 2 places at once.

I pray that no other parent has to see their child eat with a tube because just sucking a bottle makes them tired and sick.

I pray that no other parent has to make the decision to have their child's chest cracked open and heart stopped.

I pray that no other parent has to endure the torture of seeing their child cry his eyes out, yet not hear a sound.

I pray that no other parent shall have to get instructions on how to hold their child - this should be instinct.

I pray that no other parent has an empty crib waiting for it's owner to come home from the hospital, if at all.

I pray that no other child should have to go through all this pain, yet still lose their fight in the end.

I pray for awareness.

I pray for research.

I pray for a cure.

Hearing update!

I know, I know.  I'm giving another update already, aren't you proud of me?!  We went to the audiologist, Dr Little, on Tuesday, and we actually received some great news!  First, they were finally able to complete a full spectrum hearing assessment on Atticus because he's developed enough physically to give them the type of responses they needed.  Second, he actually has more low frequency hearing than they originally thought!  Yay! So she was able to adjust his hearing aids so that they were better tuned to his needs.  And third, Dr Little said that Atticus actually has BETTER than age appropriate sound awareness.  She also said that's because he must be wearing his hearing aids.  (*pat, pat*  Good Mommy!!) :)  So some very good news all in all!  Ok, that's it for now!  As always, keep on prayin'!

Looks like a medieval torture device.....

Hello again!  Time for another update on Atticus.  He's been doing great and getting stronger every day!  The leg braces are really helping him a lot.  They forced him to slow down long enough to really focus on what he's doing.  He's developed such good core muscles, that he hasn't even thrown up in over a week!!  (Thank you, Lord!!)  He's able to sit up all the time now, his right leg is getting stronger, still working on coordinating crawling (though he's doing a pretty good "army crawl" right now), and we finally got a "stander". 

The stander looks like some sort of medieval torture device.  Seriously.  It has adjustable pieces on it so we can configure it as Atticus gets taller, but it really looks awful! LOL!  It has a large wooden base with two little gripper strips where the feet are supposed to go.  Then moving up, it has an adjustable wooden slat that goes across the front of his shins/knees to help him stand.  Then moving up, it has and adjustable piece that goes across the lower/middle back with these two "arms" that go snuggly next to his hips to help hold him up straight.  Finally there is an adjustable piece that across his upper back, with two "arms" that go under his arm pits, and a strap that goes across his chest to hold him upright.  All these adjustable pieces are attached to two wooden slats perpendicular to the base with holes drill all along it.  It really is a sight.  He can't move his legs or trunk while he's in it, but we work on OT with his hands, or I distract him with pat-a-cake or NFL Network!  :)  He's worked himself up to about 5-7 minutes before he gets tired and mad.  Right now the goal is to get to 15 minutes.

In other areas, we got some great news from the Pulmonologist, Dr Brown.  First, let me explain that Atticus has become quite the little stinker when it comes to leaving on his nasal cannula.  He refuses to do so.  It doesn't matter what I do, he figures out a way to take them off.  The last time I tried taping them to his face, he just looked at me, narrowed his eyes, and "He-Man" ripped the cannula (tape and all!) off his face, then shook his head "no"!  LOL!  He does not like it at all!  He even broke his last cannula right before the pulmonlogy appointment.  So when we went to see Dr Brown on Tuesday, I asked if he had any tips or tricks for keeping the cannula on Atticus' face.  He said that other than tape, that was it.  He also said that since Atticus refused to wear them, and his sats were remaining about the same with and without the oxygen, he had no problem in letting Atticus go without the oxygen during the day while he was active, if I could slip it back on him while he was sleeping!!  Hooray!!!  Ding dong, the oxygen is almost gone!! Yay!  No more having to untangle him as he's trying to be mobile!  Nor more fighting to keep on his cannula.  Well, almost no fighting.  He still tries to sneak it off as he goes to sleep, but Mommy eventually wins, as I stay up later! ;)

Hmmm....what else?  Oh yes!  Atticus became offically 1 year post-Glenn as of January 12th!!!  It's so hard to believe that its been a year already since his last open heart surgery!  In mid-March, we'll be coming up on being home from the hospital for a whole year!!  Wow!  What a blessing!  Atticus has been through so much in his short 15 months of life, but he is getting stronger and stronger every day.  I'm so thankful for every moment I get to spend with him!  Thank you for continuing to follow our story.  And as always, Keep on prayin'!!

New leg braces

Well, Atticus got his new leg braces (AFOs) yesterday. He wasn't a happy camper about them at first. He really didn't like being strapped into them, but once that part was over, he decided that they weren't so bad anymore. Later, once we were back at Grandma's house and he could play in the floor, Atticus decided that banging them together in the air over his head was actually pretty fun!

I wasn't really sure what to expect when we went to pick them up, but they're not so "Forrest Gump" as I thought they would be. They're made of a thick, smooth plastic (almost like a beach sand bucket, but thicker), with a large strap around the top of the brace and another smaller strap across his foot. They stop just under his knees, and look like a "L" running down the back and sides of his leg and foot. The right one is yellow, the left one is green-which will help me keep them straight, and they have footballs on the straps. (Go Packers!) It's pretty funny because the father and son that own the business are actually Detroit Lions fans, so the son joked about making them blue and silver instead! LOL! (For those of you that are non-football fans, the Packers and Lions are division rivals, and they just beat us a few weeks back!)

We also had to bump Atticus up to an infant's size 5 shoe to be able to have enough room to fit his foot and the brace in the shoe. Thankfully, that's just about the time that I started saving Gideon's (my 3 yr old son) old shoes, so we had a pair handy! (Isn't it lovely how God ALWAYS provides?) With his shoes on and his clothes on, you'd never even know he had on the leg braces. He's in his ExerSaucer as I write this (watching his NFL network, of course!), so we're already putting them to work. I can't wait until my little man can crawl, stand, and eventually (drum roll please...) walk!! I'll try to be better with my updates so everyone can keep up with his progress. And as always, Keep on prayin'!

Long overdue update

Forgive me.  I know, I know.  It's been over 2 months since my last post.  So I'll make this one a long and detailed one so that I make sure that I catch up on all points about Atticus.  First, I hope you notice the new pictures!  We finally got some new family pictures done two days ago, and they couldn't have come out better!  Everyone looked great!  I love Atticus' curls, but they're starting to really get in the way of his nasal canula and hearing aids, so before they had to be cut; I wanted to make sure I got them in some pictures! :)

I can't believe Atticus is already 14 months old now!  He's gotten so big!  He's up to 24.5lbs and is about 32 inches long!  We've had some recent doctor visits, and added some new ones, so I'll try to go through them one by one and give you all the details.  First, for obvious reasons, is the cardiologist.  Thankfully, Atticus' heart function and oxygen saturations have been great, so no concerns there for the moment.  Dr Williams is still looking at that magical 30lbs mark as the milestone before beginning to talk about the Fontane.  Other than that, there's been no real changes in that department.

The pulmonology visits are fairly infrequent, because it's just going to take time for Atticus' lungs to heal completely, and there's no use just sitting in a doctor's office when there's nothing new to report.  We did manage to go from .5L down to .25L, so that's at least forward progress!

In neurology we've had some great news!  We're finally off Keppra and still seizure free!!  This has been one of my biggest reliefs.  We visited with Dr Kinsman at the end of October, and got off the Keppra by the end of November.  He was so excited to see Atticus!  He just kept repeating, "You're just such a little warrior, man!"  Then he would turn to the resident and explain about the "massive brain bleed" that Atticus had and how amazing it is that he has the cognitive function that he does.  Atticus is very alert, aware, he has problem-solving skills, he's developing his coordination, and you would never even know that he'd ever had 1 bleed, much less 2 bleeds!!  This is one area where the power of prayer becomes most obvious to me in Atticus' life.  Atticus "never should have made it" through those brain bleeds.  But with an army of prayers going up on his behalf, God chose to show His power and healed Atticus.  And I thank Him each and every day.

In audiology there isn't much to report other than how big an impact having hearing aids has made on Atticus.  Not only did they completely change his little world and expand it by leaps and bounds, but it completely changed him.  He is just so active!  He wants to explore everything.  As he's gaining mobility, he's getting into more and more--just like a typical baby! LOL!  He's also beginning to try to imitate sounds and tones.  He'll purse his lips like he's about to say "b" or "m", but of course, his vocal chords still aren't healed, so it's still pretty growly.  We're going back to Charleston tomorrow to visit with Dr Driscolo with ENT at MUSC.  I know his vocal chords have made some progress just by the range of pitches he's able to make now, but I also know that they must still have a long way to go yet.  I'm eager to hear what the Dr has to say tomorrow.

Hmmm....what else?  Atticus is doing well with all of his therapies.  For PT, he's finally starting to be able to sit up unaided for longer and longer periods of time, and he even ENJOYS playing in his ExerSaucer (which makes the PT very happy)!  I found out the secret to keeping him upright in the ExerSaucer for longer periods of time was to turn on NFL network and let it ride...Atticus LOVES to watch football!  It's the cutest thing.  I thought it was just because of the bright colors, but if I change it to cartoons, he becomes bored and uninterested.  The minute you switch it back to football, he's glued to the TV!  He growls at the players, get excited about plays and even pushes with his legs to bounce in the seat!  It's hilarious, but it's helping him make great progress!  He's also beginning to pull his knees and elbows up under himself when he's on his stomach, and trying to coordinate how to crawl!  It won't be long now until he's really mobile!  Good thing he's still tethered by his oxygen tube so I can keep up with him! :)  He already rolls around like a little tumbleweed and can push with his legs and spin on his back to swivel any direction he wants to go!

His OT and Speech therapies are also going well.  He's becoming more dexterous with his hands, and is able to catch himself better from falling over when sitting up.  Like I said earlier, he's beginning to try to imitate tones, and he loves to mimick behaviors.  If I clap, he claps.  I if bounce, he'll bounce, etc.  It's a great precurser to speech once those vocal chords decided to get back together! ;)  The Speech therapist is also working on some basic baby sign language to help his language skills develop.

All the developments with PT has also led us to add two new specialists to our resume.  We met with Dr Locke, an orthopedist, and the folks at Braces & Boots.  Atticus' right leg is significantly weaker than his left leg because of all the damage that happened during the Cath procedure when he was almost 1 month old.  Since he's getting closer to weight bearing, the PT thought it was time to finally see an orthopedist about his leg.  Dr Locke took an x-ray of Atticus' spine and hips, and examined his leg and came to several conclusions.  First, his spine is slightly curved because the left side is so much stronger and used more often, but if we can play catch up on the right side, then it should straighten out.  Second, his hips are straight and he didn't see any problems there.  (Thank you God!)  Third, there is a lot of muscle damage in the leg, but (once again, Thank God) there's no nerve damage because he's able to move the foot in the full range needed!  So Dr Locke prescribed bilateral AFOs (leg braces from the knee down to the foot), a reverse walker with wheels, and a prone stander.  (We'll see what those last two look like once they come in from the pharmacy!)

All this led us to the folks over at Braces & Boots, who actually make the AFOs.  We went yesterday for our first appointment.  It was pretty neat.  They put casts on both of his legs from the knee down and then cut them off.  They'll use these as molds to make the braces.  I picked out his colors, yellow and green-one of each, and his velcro straps will have little footballs on them! :)  I figure having the braces two different colors will help me keep them straight aobut which one goes on which leg!  We go back on December 20th to pick them up and learn how to use them, take care of them, etc.  Just in time for Christmas!

I think that catches us up on all the doctors, except for his regular pediatrician, Dr Goldberg, who couldn't be happier with him.  He still has his G-tube for feedings, and he still is real happy about eating regular food.  Although we're starting to have more good days than bad days with the G-tube, the constant throwing up still makes his resistant to having any food in his mouth.  The good news is that due to the Speech therapy, he's more and more receptive to chewing on teethers, toys, etc.  And, of course, fingers are still his favorite!  lol!

Atticus is such a little miracle.  He is so full of personality and I am so thankful for every day I have with him!  Thanks for continuing to check in on us, and please remember to sign the guestbook!  And as always, keep on prayin'!

Atticus' 1st Birthday!!!

I know it's been a while since I posted on here, but today is a very special day!  It's Atticus' 1st birthday!!!!  I can hardly believe that it's been a whole year since Atticus was born and began his journey with HLHS.  You can go back and reread his story to see what all he's been through, but today I'd like to recap just one day....the day he was born.

Robbie and I had arrived at the hospital the night before I was scheduled to be induced.  When we had arrived, I had just driven across the state and then walked 3 blocks to the hospital (we'd parked at the wrong garage).  When the nurses had checked me in, I was already dialated 3 cm!!  They gave me some medicine to slow me back down as it was Sunday and none of the doctors that needed to be there were there that night.  Thankfully Atticus was a good boy and waited until the next day.

Bright and early the next morning, the doctors started me on Pitocin (?) to induce my labor.  I opted to get the epidural, which was both great and horrible.  It was great because it was the first time with any of my deliveries that it worked the way it was supposed to!!  I finally was completely numb!  It was horrible because it took over an hour to place (they had a resident with them, and let her "learn" how), the resident ran the cath into my muscle wall (which reeeeeeeeeally hurt later), and they had to do it again.  But like I said, once they were done...aaaahhhhhhhhhh.  I told Robbie that if they could promise it work every time, I'd gladly have as many kids as he wanted!!!  But only if!

We passed the time by watching a little morning news, some comedy, and being closely monitored by the doctors and nurses.  My mom was there, Robbie-of course, and my preacher and his wife came also.  That really meant a lot.  Every one had just decided to go for some lunch (none for me until after the baby) and the preacher and his wife left to go get it for everyone.

The nurse came in to check my progress, looked at the machine that keeps tracks of your contractions, looked at me and said, "Are you feeling any pressure?"  I replied that I was too numb, but I guessed I did feel a little bit of pressure down low.  The nurse said that's what she figured and started calling everyone else to get me ready to roll into the Operating Room.  (I had to deliver in the OR just in case something started to go wrong with Atticus during the delivery, and so they could hand him off to the Pediatric Cardiac Team that was waiting on the other side of the OR to evaluate him as soon as he was born.)  Luckily, the preacher and his wife arrived just in time to see me being wheeled across the hallway.

Robbie got into his OR scrubs and came in with me.  There were at least 10 people in there!  The doctor (not at all the lady I was expecting to deliver me) told me to push, and out Atticus came!  It only took 1 push!!  They held him up for just a moment so I could see him, and then cut the cord, wrapped him up, and out the door he went to the other half of the OR to the awaiting team of doctors.  My mom tells her version of being on the outside of the OR.  She was talking with Brian and Sondra (the preacher and his wife) about how she hoped she'd get a chance to see him went, whoosh!  Out they came with Atticus.  It was only for a moment, as they ducked into the other room, but it was enough.  They all joked that the delivery took less time than it did to get me in the OR!

I was cleaned up and wheeled back across into my room to recover from the delivery.  About an hour after Atticus was born, the nurses wheeled him into my room, in an incubation unit.  I couldn't hold him, but I could stick my hands in and hold his tiny hand.  Thankfully, Valerie (my sister) had arrived a few minutes before with Sandy, Gideon, and Jamal (my nephew).  We wanted to make sure that they all got a chance to meet Atticus, because we didn't know how the surgeries would go, and whether they would get another chance to see him.  Unfortunately, he was only in there for about 5 minutes, when the heater on his unit started to short out, and they had to take him away to the NNICU (neo-natal ICU--the PCICU was full for a couple of days).

It broke my heart that he had to leave me so soon.  After all, each moment was precious because I might have so few of them.  I remember wanting to go see him that night, but feeling far too exhausted to go.  It would be a whole week before I could hold him for the first time, on the night before his first surgery.  He would already be hooked up to a ventilator and about a million monitors, but it didn't matter.  The moment they placed him in my arms, I knew I never wanted to let him go.  I was so afraid of what was about to happened (though, if I had known everything he'd go through then, I'd have said, "No!  I'm not strong enough to handle that!").  But, you can read that story in my earlier posts.

Atticus arrived in this world on October 5, 2009 at 12:50PM.  He weighed 8 lbs 15 ozs (almost 9 lbs!--and a week early!) and was 21.5 inches long.  Now, a year later, God has seen fit to let Atticus not only make it through all the many complications he has had, but to thrive and flourish!  He is currently about 23 lbs and about 30 inches long!  Thank you all who have prayed for us, kept us in your thoughts, helped us in so many ways, and that have shared Atticus' journey to date with us.  I know that he still has more to go through before we can (hopefully!) have all his surgeries behind us, but today none of that matters.  God has blessed me by letting me have the chance to celebrate Atticus' 1st birthday!  Thank you all again for celebrating this joyful day with us, and as always, keep on prayin'!!