We have a date....

Hello everyone!  First, Happy Congenital Heart Defect (CHD) Awareness Day!  Also, Happy Valentine's Day! It's been a little busy around our household lately.  And that has a lot to do with some recent news we've gotten.  I received a phone call from Dr Bradley's office the other day.  His nurse was calling me with two possible dates for Atticus' surgery.  WHAT?!!  I thought we were following up with his cardiologist who was then going to pick a date with us?!  Some of this is still new for me.  We never left the hospital between Atticus' Norwood Procedure and his Glenn Procedure, so I'm not really familiar with the protocol for scheduling the next surgery.  I went with the earlier of the two dates, so it looks like Atticus will be having his Fontan on July 11th, 2012.  (Akk!  Less than 5 months to go!)  We'll have to check into the hospital on July 10th at 9:00 AM for his pre-surgery work up.  Which means we'll have to drive down the day before to stay with my sister and her husband.  I'm really not looking forward to this.  Its a day I've know was coming since before Atticus was even born, but I'm still not ready.  (Honestly, is anyone who has to go through this EVER really ready?)  I don't like to think about it too much, until its getting closer to time to go.  The thoughts of having to hand my baby over to the doctors and surgeons is too much.  To know that I am willingly giving him over to their care, so that they can break his sternum again to repair his heart, is gut wrenching.  To know that he'll be put back on not only a heart/lung bypass machine again, but also that accursed ventilator again is more than frustrating.  To know that he will be in pain, swollen, and delayed in his development makes me want to break down and cry.  Then I think about Sandy, Gideon and Robbie.  Atticus will be old enough to know if I'm gone from the hospital this time.  I won't be able to leave him with some one else.  He's a major "mama's boy".  Being somewhere strange, with complete strangers (to him anyway--they know him quite well!) would be too much for Atticus.  I'm praying that we are there for just a few weeks, and then back home again.  (Please keep this thought in your prayers too!!)  I know that Sandy and Gideon are older now, and they have a better grasp of what is going on this time around.  Sandy will be almost 7 years old, and Gideon will be 5 years old; versus 4 yrs old and 2.5 years old.  But the longer I'm gone, the harder it will be on them.  Sandy's birthday is August 17th, so I'm definitely praying we can be home by then!  (Otherwise we may have to plan a birthday in Charleston...)  Whew....that's a lot of "what ifs".  Again....it's why I don't like to think about it too much.  I'll worry myself to death.  And worrying doesn't change a thing.  I just continue to trust that no matter what happens, God has a plan for it all.  ("Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee..."  Jeremiah 1:5)

So since we got this news, I took a part time job to help save up before we have to go down there.  It's only about 20 hours a week, but the money is pretty decent.  Its already helping ease the budget up a little.  And we're going to need it.  Our car won't start now, so its in the repair shop.  (At least when it happened, God had a way to take care of it already in place!)  I'm glad we have such wonderful family and friends to help us out when things like this happen.

In the meantime, we're continuing to work with Atticus.  He's up to about 35 different signs now.  He's even starting to combine 2 signs at a time when asking for something!  (like "want, please" or "down, please" or "more bubbles", etc)  Its so awesome to watch his understanding grow.  He really likes cars.  Atticus recently discovered Gideon's "Batmobile" car.  It has a turn switch on the back that activates it and then it will zoom across the floor for the entire length of the room.  He LOVES it.  He'll turn it on, let it zoom, then go crawling after it!  He's learning to color, and I think he's going to be a lefty.  :)  Now to get him to quit putting them in his mouth!  Lol!  He's also quite demanding about wearing his hearing aids.  He wakes up in the morning and after he gets dressed, he'll do the sign for "hearing aid" and fuss until he sees that I'm going for them.  I was really impress a few days ago when he started pointing to his left ear and doing the sign for "hearing aid", even though he was wearing it.  He kept doing the sign, and pointing, getting frustrated, when I decided to take it out and check it.  Sure enough....the battery was dead!  I got it a fresh battery, put it back in his ear, and he started smiling!  It was the first time he had let me know that the hearing aid wasn't working while he was wearing it!  Progress!  Progress!

Well, its getting late enough for this old lady.  Please continue to keep us in your thoughts and prayers.  We have a big journey ahead of us, so I'll update more as we get closer to the big day!

Good news, bad news

Sorry I didn't update earlier, but its been a long few days.  We're safely back home now, and Atticus is very glad!  He's doing ok, and he's still really tired and puffy from all the procedures and medicines.

Just so that I don't get ahead of myself, I'll take a minute to go back to after his Cath, and relate the last few days that way, because we had a busy few days.  First, we got GREAT news....Atticus IS a candidate for the Fontan!!!  Thank you all for keeping us in your prayers!!  God is so good!  We also got more great news, as the doctors also told us that they didn't have to do any corrective procedures while they were in the Cath Lab!  All of his blood vessels are wide open; even in his bad leg, and even where they had to place the stint in his aorta.  Hooray!  The pressures in his heart and lungs were perfect, and they think he's a great candidate.  However, they did notice that his Tricuspid Valve is still very leaky.  It's not so bad that anything needs to be done immediately, but Dr Bradley will have to attempt a repair during his Fontan.  He'll have to put a band around the valve to draw the "flaps" closer together, then soucher some of them together so that they actually open and close like they should.  Hopefully, this will be enough to repair the valve, and nothing else will have to be done.  (It also confirmed my hopes that Dr Bradley would be performing Atticus' Fontan, since Dr Hsia moved to London after Atticus' Glenn.)  He only weighed a little over 27 lbs, so they decided to wait another 3-6 months, and to let him gain about 5 more pounds.  We're going to follow up with his cardiologist, Dr Williams, sometime within the next 2 months (I still have to make the appointment), and he'll ultimately be the one who decides when to make the call for surgery.  Ideally, I'd like to aim for sometime either in mid to late May or after the summer is over.  They said that they're really busy in the summer, so the chance of being bumped from a scheduled surgery is greater.  That's something I'd really like to avoid!

That was on Wednesday.  Atticus was really groggy the rest of the day, and had a pretty rough night too.  Once again, we had to stop his overnight feeds at midnight, because he was having a circumcision and MRI the next morning.  I spent the night in the room with him, and the poor guy was tossing and turning all night.  He would wake up and get angry whenever the nurse had to come check his vitals every 2 hours.  He would cough and wake himself up because his throat was sore from being on a ventilator again.  He was so pitiful.  :(  Then, he woke up around 5:45am, and just wanted to be held.  The nurse came in around 6am to say that they were getting ready to get him for his surgery, and then they would take him to his MRI.  I walked with him down to the pre-op area, and just rocked him until he was given his sedative, and fell asleep.

I went back up to his room on 8D, and stretched back out on the couch to close my eyes for a little longer, since I hadn't gotten but about 6 hrs of sleep in the previous 3 days.  But it was short lived, because the study coordinator came to get me to sign all the paperwork necessary for the MRI.  Haha...seems like its always the way it happens.  She was really sweet and we ended up chatting for over an hour after she had brought me back to Atticus' room.  She finally excused herself, and I headed for the couch once again...after all, it was still pretty early in the morning.  I snoozed for about 45 minutes when we got a little more bad news.  The doctor who was conducting the study (Dr H) came in to talk about Atticus' MRI.  Everything for his heart looked fine, but while they were taking pictures of his heart, he noticed what he though looked like a cyst on Atticus' spine.  He said that it could be nothing, that he was a cardiologist not a neurologist, but they were keeping Atticus in the MRI machine a little longer to get some more detailed pictures of his spine.  After all, better safe than sorry.  He wasn't sure how long it would take him to get a neurologist to come take a look at the pictures, but it didn't seem like anything life threatening, so we would still be able to be discharged that day, once Atticus recovered from his anesthesia.  I thanked the doctor, and they said they would give me a call once he was in the recovery area.

I received a call not too long thereafter saying that Atticus was all done, and that I could come join him in the recovery area.  He was starting to wake up, and I had gotten there with his favorite toy just in time.  He immediately calmed down once I picked him up and the nurse grabbed me a rocking chair.  I sat and rocked him until it was time to go back to his room, where we would be discharged from later on.  Several hours later, we were finally on the road home, with a few more hours to drive to actually arrive there.  It was so nice to be home and snuggled with my hubbie in my own bed!

This morning, I got the phone call from Dr H.  They had confirmed that Atticus did indeed have a cyst on his spine.  It's not life threatening, or anything we really need to worry about too much at this point in time.  He also said that generally they see these kinds of cysts in adults who have some sort of chronic pain.  He doesn't think it will even necessarily give Atticus any problems until he's possibly an adult.  He's going to be sending an email and the MRI results to Dr Kinsman, Atticus' neurologist there at MUSC, since he had wanted to see Atticus again before his Fontan anyway.  We'll follow up with him at some point, and Dr Kinsman can give us a better idea of what exactly this all means for Atticus.

Please continue to keep us in your prayers as we face these new challenges with Atticus.  Pray that we can continue to make the best decisions regarding his care, that we can stay healthy until he has his Fontan, and that we have the strength to let God worry about it all for us.  We continue to trust in His plan for us, our family, and especially our sweet Atticus.  Please also keep him in your prayers as he recovers from all these procedure from the past few days.  Thanks for continuing to think of us, and checking back in with us from time to time!  :)

A big day....

Hello everyone!  I hope you all had a very Happy New Year!  We certainly did!  But now it's already Jan 11th, and as I mentioned earlier....that makes for a big day for Atticus.  As I type this, I'm sitting here in one of the many waiting rooms in MUSC while Atticus is having his Pre-Fontan Cath done.  We checked in at 7:15AM this morning, and he finally went back to the Cath Lab around 10:30AM.  Assuming all goes well, and that it remains a purely diagnostic Cath (aka they don't have to actually do any corrective procedures), he should be back there for about 3-4 hours.  I'll update here again once he's done with the Cath, and we've had a chance to speak with the Cardiologist/surgeons about the results.

Please keep us in your prayers today.  There are so many thoughts running through my brain right now, I feel like a duck on the water.  I may look calm on the surface, but under the water, I'm kicking and fighting to keep myself from sinking into "what ifs?".  Please pray for good news (that he IS eligible for the Fontan procedure), for the skills of those working on him, for strength for us and for Atticus, and for wisdom for Robbie and I to make the right decisions.  We continue to trust that God has a plan for us and for Atticus, no matter what path that might be down.  Thank you all in advance for your prayers, well wishes, and thoughts.  I'll update soon!

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!