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'!
Tuesday, December 21, 2010
Friday, December 10, 2010
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'!
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'!
Tuesday, October 5, 2010
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'!!
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'!!
Tuesday, August 24, 2010
160 days......+1!!
Today was certainly a big day! Not only did Atticus's big sister Sandy start her very first day of kindergarten (homeschool), but Atticus has now officially been OUT of the hospital 1 day longer than he was IN the hospital!! What a wonderful gift from God! My oldest child is growing up, and moving on to school, and my youngest child has now been home with all of us for an offical majority of his life! This has been a day I've been looking forward to on both fronts!
Words can't describe how special it is to have Atticus home longer than he's been away. It's hard to express the emotions that go along with this day. It's almost like validation after such a rough and difficult start to Atticus' life. To have been hospitalized for such a long time, we can officially begin to say that he's been "well" more than he's been "sick". To show the power of God and prayer; to be able to say that he's not had ANY emergency room visits or ANY rehospitalizations since we left MUSC now 161 days ago. That is a wondeful feeling.
We went to visit all our wonderful doctors and nurses in the PCICU on Saturday, when Atticus had some check-ups in Charleston. (His appts were the day before, but they had a baby come back from the OR just as we got there, so we came back the next day.) It wonderful to see everyone under such very different circumstances. The nurses all took turns holding him, playing with him, and snapping pictures of him with their phones. They couldn't believe how big he's gotten (up to 22.3lbs!), how many teeth he now has, his new hearing aids, and how red his hair has turned! Several told me how he was their inspiration, because he was able to pull through so much! They said they share his story with some of their new families; especially the ones going through a particularly hard time, as proof that sometimes, you never know what can happen. That was humbling. I'm glad to know that Atticus already means so much to people I've never met; and that maybe his story can bring them hope through difficult times.
Thank you all for your many continued prayers for Atticus and our family. He is living proof that God is powerful and that He has a plan for all of us. Thank you for continuing to share in our journey. I am so humbled by all of your love and kindness and support. Atticus still has so much to face in his life, so as always....Keep on prayin'!!
Words can't describe how special it is to have Atticus home longer than he's been away. It's hard to express the emotions that go along with this day. It's almost like validation after such a rough and difficult start to Atticus' life. To have been hospitalized for such a long time, we can officially begin to say that he's been "well" more than he's been "sick". To show the power of God and prayer; to be able to say that he's not had ANY emergency room visits or ANY rehospitalizations since we left MUSC now 161 days ago. That is a wondeful feeling.
We went to visit all our wonderful doctors and nurses in the PCICU on Saturday, when Atticus had some check-ups in Charleston. (His appts were the day before, but they had a baby come back from the OR just as we got there, so we came back the next day.) It wonderful to see everyone under such very different circumstances. The nurses all took turns holding him, playing with him, and snapping pictures of him with their phones. They couldn't believe how big he's gotten (up to 22.3lbs!), how many teeth he now has, his new hearing aids, and how red his hair has turned! Several told me how he was their inspiration, because he was able to pull through so much! They said they share his story with some of their new families; especially the ones going through a particularly hard time, as proof that sometimes, you never know what can happen. That was humbling. I'm glad to know that Atticus already means so much to people I've never met; and that maybe his story can bring them hope through difficult times.
Thank you all for your many continued prayers for Atticus and our family. He is living proof that God is powerful and that He has a plan for all of us. Thank you for continuing to share in our journey. I am so humbled by all of your love and kindness and support. Atticus still has so much to face in his life, so as always....Keep on prayin'!!
Wednesday, August 18, 2010
We have Hearing Aids!!
We had a very exciting day today...Atticus finally got his hearing aids!!! It was amazing! I'm so glad I got to record it on video to share with our friends and family! Too bad I can't post it on here! :) But I'll try my best to describe it.
Atticus was very wiggly and squirmey while Dr. Little was cutting the tubes to the correct length to fit over his ear. Dr. Little was talking to Robbie and I while she made the final adjustments; explaining a few last minute details about the care of them, when she slipped the first one in his right ear. He immediately froze and got very still. My husband smiled and gently talked to him. He turned as Dr. Little was coming around to place the other hearing aid in his left hear, because he could hear her! He snapped his head around, and his eyes continued to be open wide as she place the second hearing aid.
Everyone began to talk at once, taking turns vying for his attention, and Atticus just stared with his fingers in his mouth (his natural defense/comfort position). This continued for about 2 minutes, when once again, Atticus turned and looked at Robbie, and it's like the light clicked on! He realized the sound was coming from Daddy, and he burst into the biggest smile! He quickly turned his head to me and smiled up at me, reaching up to grab my face, and leaning his head on my chest. Then he looked at Robbie again and laughed, and it was all ok! He was full of wonder at where these different noises were coming from, and you could tell he had just entered a whole new world of sound! He was so exhausted by the time we got home that he slept for almost 3 hours!
It was such a great moment; one I'll truly treasure! I can't wait to see how this will improve his understanding of the world around him! It's already made a difference in his response to his name and the various sounds around him. I feel so blessed! Thank you all for continuing to pray for us!
Atticus was very wiggly and squirmey while Dr. Little was cutting the tubes to the correct length to fit over his ear. Dr. Little was talking to Robbie and I while she made the final adjustments; explaining a few last minute details about the care of them, when she slipped the first one in his right ear. He immediately froze and got very still. My husband smiled and gently talked to him. He turned as Dr. Little was coming around to place the other hearing aid in his left hear, because he could hear her! He snapped his head around, and his eyes continued to be open wide as she place the second hearing aid.
Everyone began to talk at once, taking turns vying for his attention, and Atticus just stared with his fingers in his mouth (his natural defense/comfort position). This continued for about 2 minutes, when once again, Atticus turned and looked at Robbie, and it's like the light clicked on! He realized the sound was coming from Daddy, and he burst into the biggest smile! He quickly turned his head to me and smiled up at me, reaching up to grab my face, and leaning his head on my chest. Then he looked at Robbie again and laughed, and it was all ok! He was full of wonder at where these different noises were coming from, and you could tell he had just entered a whole new world of sound! He was so exhausted by the time we got home that he slept for almost 3 hours!
It was such a great moment; one I'll truly treasure! I can't wait to see how this will improve his understanding of the world around him! It's already made a difference in his response to his name and the various sounds around him. I feel so blessed! Thank you all for continuing to pray for us!
Thursday, July 15, 2010
A good round of updates!
Hello everyone! Sorry its been a little while since I gave a good Atticus update, but life is always busy, and sometimes I'm just too tired to get on the computer! I thought it would be a good time to send a new update because Atticus has now officially been home for 4 months now!!! Hooray! He's still offically spent more time IN the hospital than OUT of it, but we're rapidly approaching an equilibrium point!
Atticus is now 9 months old, 21 lbs 13 oz, and a little over 28 in long! Whew! What a big boy!! His doctors all remain happy with his progress, as well as his therapists. The only adjustment that Dr Goldberg made is to cut back on his overnight feed, so that he doesn't gain too much weight too quickly. I'm sure not ready for him to hit that 30lbs-35lbs mark needed for the Fontaine quite yet! So we'll scale him back a little bit. We still don't have any other of his doctors to visit right now. We'll see his cardiologist on July 26th, the pulmonologist in 2 more months after that, and some follow ups in Charleston in late August. Which is nice, because that means the longer between visits, the better Atticus must be doing!
We also got some exciting news today from the Audiologist. Atticus' approval paperwork has finally come through!! Unfortunately, they were still waiting on MUSC to fax over the offical results from his hearing screen, so Dr Little can't make her recommendation until she has that in his file. Good news is that I got hold of the folks from MUSC's audiology department, and they said they would send it this afternoon. So hopefully we can follow up with Dr Little on Monday to make sure they got the needed paperwork, and get Atticus his hearing aids soon! I'm so excited! I can't wait for Atticus to finally be able to hear well. I just can't wait to see his reaction!
Atticus also continues to improve physically. He's still receiving physical, occupational, and speech therapy at home. The physical therapist was really impressed with his improvements when she came yesterday. He's starting to be less resistant to being on his tummy, and can do better with turning over on his own. He's also starting to be more willing to let us bring new things to his mouth (toothbrush, teething rings, etc) during his speech therapy, which will go a long way in getting him off his G-tube and able to feed by mouth. And his occupational therapy is going well do, he's doing better in reaching for objects, transferring them between hands, looking for fallen objects, and grasping large and small objects. He continues to make small strides every day. He's even started clapping his hands, which is a 9 month development!! Way to go Atti!
Atticus really is such a miracle. With everything he's been through, he continues to fight each day to improve and grow stronger. And he does it all with a smile! He's really my inspiration when I get to feeling like something is too tough. After all, if he can make it through everything he has to do, what's my excuse?! Thanks for everyone's continued prayers and well wishes! I'm a firm believer that they really do make a difference. So, be sure to keep them up!! I'll try to keep the updates coming, and maybe a little more frequently! ;)
Atticus is now 9 months old, 21 lbs 13 oz, and a little over 28 in long! Whew! What a big boy!! His doctors all remain happy with his progress, as well as his therapists. The only adjustment that Dr Goldberg made is to cut back on his overnight feed, so that he doesn't gain too much weight too quickly. I'm sure not ready for him to hit that 30lbs-35lbs mark needed for the Fontaine quite yet! So we'll scale him back a little bit. We still don't have any other of his doctors to visit right now. We'll see his cardiologist on July 26th, the pulmonologist in 2 more months after that, and some follow ups in Charleston in late August. Which is nice, because that means the longer between visits, the better Atticus must be doing!
We also got some exciting news today from the Audiologist. Atticus' approval paperwork has finally come through!! Unfortunately, they were still waiting on MUSC to fax over the offical results from his hearing screen, so Dr Little can't make her recommendation until she has that in his file. Good news is that I got hold of the folks from MUSC's audiology department, and they said they would send it this afternoon. So hopefully we can follow up with Dr Little on Monday to make sure they got the needed paperwork, and get Atticus his hearing aids soon! I'm so excited! I can't wait for Atticus to finally be able to hear well. I just can't wait to see his reaction!
Atticus also continues to improve physically. He's still receiving physical, occupational, and speech therapy at home. The physical therapist was really impressed with his improvements when she came yesterday. He's starting to be less resistant to being on his tummy, and can do better with turning over on his own. He's also starting to be more willing to let us bring new things to his mouth (toothbrush, teething rings, etc) during his speech therapy, which will go a long way in getting him off his G-tube and able to feed by mouth. And his occupational therapy is going well do, he's doing better in reaching for objects, transferring them between hands, looking for fallen objects, and grasping large and small objects. He continues to make small strides every day. He's even started clapping his hands, which is a 9 month development!! Way to go Atti!
Atticus really is such a miracle. With everything he's been through, he continues to fight each day to improve and grow stronger. And he does it all with a smile! He's really my inspiration when I get to feeling like something is too tough. After all, if he can make it through everything he has to do, what's my excuse?! Thanks for everyone's continued prayers and well wishes! I'm a firm believer that they really do make a difference. So, be sure to keep them up!! I'll try to keep the updates coming, and maybe a little more frequently! ;)
Thursday, June 24, 2010
Another long post....
Hello everyone!
Wow. Where to start....I guess I'll start with the fact that it was about a year ago that I had my OB visit during my pregnancy with Atticus and we learned that he had some sort of heart defect.
I remember it like it was yesterday. I had gone for the normal ultrasound at 5 months gestation, but the technician was having trouble getting the measurements for Atticus' heart because he was turned at a funny angle. No problem, they had said. Everything looked proportional. They would just do another ultrasound when I came back for my 6 month check-up to get the measurements they needed. And little did I know that when I came back just 1 month later, my entire world was about to be turned upside down!
I remember going through the usual routine...climb up on the table, pull your pants down just below your hip line, lay back, and relax. It was just going to be a quick ultrasound to get those heart measurements. Except, it seemed to taking a really long time. Even compared to a normal ultrasound. But I waited patiently. Maybe he was turned oddly again. Then the technician said the words that made me instantly know that something was up. She told me, "Ok. Well, I'm just gonna run these photos down to Dr Minto so she can have a look at them. Go ahead and clean up (from all the gooey ultrasound gel), and have a seat until they call you back." What did she mean she was going to run the photos to Dr Minto? Why? This was my third pregnancy, and no technician had ever done that. They always just started cutting them apart and taping them in the file. What was going on?!
I waited anxiously for Dr Minto to come into my room once I was back there. Thankfully, she didn't keep me waiting long. She walked in with her usual "How are we doing today?"; I replied, "Fine." Then her face changed and she looked at me and said, "Well, we think there's something wrong with the baby's heart. It could be nothing, but I want to send you to a specialist to make sure." Even though I had tried to prepare myself for some sort of bad news; it hit me like a ton of bricks. This is never the type of visit you want during your pregnancy. I tried to be brave, but Dr Minto, having been my OB/GYN for many years, and delivering both my other children, hugged me around my neck, and said, "It'll be ok. Go ahead and let it out." At which point I immediately began to cry. She held me for just a moment, handed me some tissues, and said, "Take all the time you need. I'll go set up that appointment for you. I'll be back in just a minute."
I dried my eyes, said a desperate prayer, and tried to sort through the million thoughts swimming through my brain at that moment. How would Robbie react? What exactly was wrong with my precious unborn son? How would this effect him? How would this effect our family? Could it really be nothing? I knew the answer to that one in the bottom of my heart. I knew that it wasn't nothing. I knew it was something serious. I had really known all along, but had just shrugged it off as normal pregnancy jitters. I had never been able to shake that nagging feeling in the back of my mind. He didn't seem as active as either Sandy or Gideon. He just didn't seem to do a lot of the things that they had. Maybe it was just "Mother's Intuition". Maybe God had just been trying to prepare me. Dr Minto came back and gave me all the necessary info. I would have another appointment the next day with a specialist through MCG in Augusta, GA.
I remember going home, and going in to talk to Robbie. My wonderful husband; he knew that something was wrong the moment I stepped in the door. He held me on the bed as I cried and told him all that the doctor had told me. He tried to reassure me that maybe it was nothing. No need to get upset just yet. Wait until the appointment tomorrow. He even called out of work just to stay with me for the rest of the day. God certainly blessed me to give me a husband like Robbie. He is wonderful in more ways than I can name.
I went to the specialist's office and waited anxiously. Finally, it was my turn, and I went back for the ultrasound. This was pretty much like any other ultrasound, except it was mostly looking at his heart and arteries around it, and it was MUCH longer. Finally, once the doctor had had a chance to look at everything; he came in, sat down on a stool below me and began with words that would ring truer than even he could imagine. "It's called Hypoplastic Left Heart Syndrome," he said. "You didn't sign up for this roller coaster, but that's exactly what its about to be." If only he could have know what would happen over the next year!! He then proceeded to give me a brief overview of what to expect next, reassured me that the pregnancies are generally unremarkable, and that the baby should be fine until birth. He was also very candid (and I still thank him for his honesty) about the best route of care. He told me that they could do everything there at MCG, but because I was on SC Medicaid (I had been laid off from my job just a few months earlier) it was sometimes difficult to get things paid for, since they were in GA. Also, he told me that their pediatric cardiologist was fresh out of Med School, and the folks down at MUSC (some of whom he had actually worked with) were some of the best in the country, and likely our better choice of routes to take. I thanked him, and headed home to begin my research.
The articles and information that I gathered over the next several days, did nothing to really help my anxiety. While I was gathering LOTS of useful information, which made me feel like I was doing something in an otherwise helpless situation, it was grim. The statistics were not reassuring. I just felt like I was in a whirlwind of a daze. There was a whole other world that I was being inducted into, and I just felt lost. I have a strong faith in God, and I knew that all things happen for a reason. No matter how helpless I felt; I knew that God was in control. He had a plan. I just prayed that His plans were all things I was praying to happen (or not to for that matter).
And this began the long series of trips to Columbia at the MUSC High Risk Clinics there, too many BPP ultrasounds to count, gestational hypertension (gee, wonder why my blood pressure was high? lol), etc, etc; all the way to the MUSC in Charleston where my sweet Atticus was born, and the real journey began. Throughout the rest of my pregnancy; I continued to prepare myself as best I could. Nothing could have really prepared me for what was going to happen, but I did my best. Above all, God granted me peace and sanity. He held me every step of the way. As I've already said, God has a plan for everything, even when we can't understand or see what that is. I guess that's why they call it "Faith". You just have to believe.
Thank you again to everyone who has prayed, sent well wishes or healing thoughts, who'scalled, sent cards, visited, given us money, or supported us in so many other ways. You never can fully appreciate how much that means until you become the recipient of such love and kindness. Atticus still has a long way to go, but I know that God has a plan for him. I continue to trust in Him; for He has never let me down. He might lead me down a path that I would have never chosen for myself; but where He leads; I will follow. Good night, and as always....keep on prayin'!
Wow. Where to start....I guess I'll start with the fact that it was about a year ago that I had my OB visit during my pregnancy with Atticus and we learned that he had some sort of heart defect.
I remember it like it was yesterday. I had gone for the normal ultrasound at 5 months gestation, but the technician was having trouble getting the measurements for Atticus' heart because he was turned at a funny angle. No problem, they had said. Everything looked proportional. They would just do another ultrasound when I came back for my 6 month check-up to get the measurements they needed. And little did I know that when I came back just 1 month later, my entire world was about to be turned upside down!
I remember going through the usual routine...climb up on the table, pull your pants down just below your hip line, lay back, and relax. It was just going to be a quick ultrasound to get those heart measurements. Except, it seemed to taking a really long time. Even compared to a normal ultrasound. But I waited patiently. Maybe he was turned oddly again. Then the technician said the words that made me instantly know that something was up. She told me, "Ok. Well, I'm just gonna run these photos down to Dr Minto so she can have a look at them. Go ahead and clean up (from all the gooey ultrasound gel), and have a seat until they call you back." What did she mean she was going to run the photos to Dr Minto? Why? This was my third pregnancy, and no technician had ever done that. They always just started cutting them apart and taping them in the file. What was going on?!
I waited anxiously for Dr Minto to come into my room once I was back there. Thankfully, she didn't keep me waiting long. She walked in with her usual "How are we doing today?"; I replied, "Fine." Then her face changed and she looked at me and said, "Well, we think there's something wrong with the baby's heart. It could be nothing, but I want to send you to a specialist to make sure." Even though I had tried to prepare myself for some sort of bad news; it hit me like a ton of bricks. This is never the type of visit you want during your pregnancy. I tried to be brave, but Dr Minto, having been my OB/GYN for many years, and delivering both my other children, hugged me around my neck, and said, "It'll be ok. Go ahead and let it out." At which point I immediately began to cry. She held me for just a moment, handed me some tissues, and said, "Take all the time you need. I'll go set up that appointment for you. I'll be back in just a minute."
I dried my eyes, said a desperate prayer, and tried to sort through the million thoughts swimming through my brain at that moment. How would Robbie react? What exactly was wrong with my precious unborn son? How would this effect him? How would this effect our family? Could it really be nothing? I knew the answer to that one in the bottom of my heart. I knew that it wasn't nothing. I knew it was something serious. I had really known all along, but had just shrugged it off as normal pregnancy jitters. I had never been able to shake that nagging feeling in the back of my mind. He didn't seem as active as either Sandy or Gideon. He just didn't seem to do a lot of the things that they had. Maybe it was just "Mother's Intuition". Maybe God had just been trying to prepare me. Dr Minto came back and gave me all the necessary info. I would have another appointment the next day with a specialist through MCG in Augusta, GA.
I remember going home, and going in to talk to Robbie. My wonderful husband; he knew that something was wrong the moment I stepped in the door. He held me on the bed as I cried and told him all that the doctor had told me. He tried to reassure me that maybe it was nothing. No need to get upset just yet. Wait until the appointment tomorrow. He even called out of work just to stay with me for the rest of the day. God certainly blessed me to give me a husband like Robbie. He is wonderful in more ways than I can name.
I went to the specialist's office and waited anxiously. Finally, it was my turn, and I went back for the ultrasound. This was pretty much like any other ultrasound, except it was mostly looking at his heart and arteries around it, and it was MUCH longer. Finally, once the doctor had had a chance to look at everything; he came in, sat down on a stool below me and began with words that would ring truer than even he could imagine. "It's called Hypoplastic Left Heart Syndrome," he said. "You didn't sign up for this roller coaster, but that's exactly what its about to be." If only he could have know what would happen over the next year!! He then proceeded to give me a brief overview of what to expect next, reassured me that the pregnancies are generally unremarkable, and that the baby should be fine until birth. He was also very candid (and I still thank him for his honesty) about the best route of care. He told me that they could do everything there at MCG, but because I was on SC Medicaid (I had been laid off from my job just a few months earlier) it was sometimes difficult to get things paid for, since they were in GA. Also, he told me that their pediatric cardiologist was fresh out of Med School, and the folks down at MUSC (some of whom he had actually worked with) were some of the best in the country, and likely our better choice of routes to take. I thanked him, and headed home to begin my research.
The articles and information that I gathered over the next several days, did nothing to really help my anxiety. While I was gathering LOTS of useful information, which made me feel like I was doing something in an otherwise helpless situation, it was grim. The statistics were not reassuring. I just felt like I was in a whirlwind of a daze. There was a whole other world that I was being inducted into, and I just felt lost. I have a strong faith in God, and I knew that all things happen for a reason. No matter how helpless I felt; I knew that God was in control. He had a plan. I just prayed that His plans were all things I was praying to happen (or not to for that matter).
And this began the long series of trips to Columbia at the MUSC High Risk Clinics there, too many BPP ultrasounds to count, gestational hypertension (gee, wonder why my blood pressure was high? lol), etc, etc; all the way to the MUSC in Charleston where my sweet Atticus was born, and the real journey began. Throughout the rest of my pregnancy; I continued to prepare myself as best I could. Nothing could have really prepared me for what was going to happen, but I did my best. Above all, God granted me peace and sanity. He held me every step of the way. As I've already said, God has a plan for everything, even when we can't understand or see what that is. I guess that's why they call it "Faith". You just have to believe.
Thank you again to everyone who has prayed, sent well wishes or healing thoughts, who'scalled, sent cards, visited, given us money, or supported us in so many other ways. You never can fully appreciate how much that means until you become the recipient of such love and kindness. Atticus still has a long way to go, but I know that God has a plan for him. I continue to trust in Him; for He has never let me down. He might lead me down a path that I would have never chosen for myself; but where He leads; I will follow. Good night, and as always....keep on prayin'!
Monday, June 7, 2010
A very long post....
Hello everyone!
Well, it's been a little while since my last Atticus update, so I just wanted to let everyone know what's been going on lately. First, Atticus turned 8 months old yesterday!! Where has the time gone?! It doesn't seem like he's been home for 2 1/2 months already...and it certainly doesn't seem like it's been 8 months ago since we began Atticus' journey with him. I am so thankful that I have had this long to spend with him, and that he is doing so incredibly well; especially after such a rough 1st month!
Well, what have we been up to lately? On this past Tuesday, June 1st, we went to Charleston to have a check-up with the folk from Peds Surgery that placed Atticus' G-tube. It was just basically showing me how to change his button (which I already knew how to do thanks to Wanda!) and to make sure everything looked good, see if we had any questions, etc. They were happy with everything, so he got a slightly bigger size button, and that was it. We also stopped by the PCICU to say hello to all our lovely nurses and docs--who were very happy to see that Atticus is doing so well, and getting so big! He's up to about 18.5 lbs and 28.5 inches long!!! My big boy!
Next, on Wednesday, we went to Columbia to visit Dr Williams with cardiology. Dr Williams was happy with the way Atticus' heart sounded, and decided not to do another echocardiogram because he said the poor boy has had to sit through enough of them. Plus, with him being so far out post-operatively; there was really no point. He didn't make any changes to Atticus' meds, and we'll be back to see him in about 2 months.
Then, on Thursday, we went back to Columbia to visit with Dr Brown from pulmonology. He was also very happy with Atticus. He said that he could tell a definite improvement in the sound of Atticus' lungs. He said it didn't sound like he was wheezing or rattling as much when he took a breath. He also decided to keep things as is on his meds, because he does still have a lot of healing to do with the Pulmonary Hypertension. He was so happy with his improvement, though, that we don't even have to back to visit him for another 4 months!! :) (Which makes my gas tank happy! LOL)
We've also been a few times to visit with Atticus regular pediatrician, Dr Goldberg. She is happy with the way Atticus is progressing, both physically and developmentally. She's been trying to slowly increase his feeds, and we've been continuing to try to feed Atticus at least a few bites of food by mouth. Sometimes he does better than others, but we keep trying!
Atticus has also starting receiving his Physical therapy, Occupational therapy, and speech therapy. PT works on his gross motor skills, OT works on his fine motor skills, and Speech works on his mouth...including working on helping him learn how to swallow, coordinate his tongue, etc. He has a lot of work to do to catch up on all areas of his development, but all the ladies have been fairly impressed with his attitude, his abilities, and his personality. We still have to follow up with his audiologist, Dr Little, to see what exactly she wants to do now that we know Atticus has moderate hearing loss in both ears, but she has said that whatever we decide; she wants it in place by the time he's 9 months old.
We'll have another 2 appointments in Charleston this upcoming Tuesday. One is for the high risk assesment, which just checks on his developmental delays, etc. And the other is another barium swallow study to see how he's progressing with the healing of his vocal chords and his ability to coordinate his swallowing. (Hint, hint to all my ladies in the PC!) I'll try to remember to update how those go sometime next week.
And finally, Atticus and the rest of us are adjusting nicely to being home. He's so alert and active; he continues to amaze me everyday. He's always so happy, no matter what he's going through, he is someone to learn from. He can just be choking and gaging during one of his feeds, but as soon as he's settled out; he's back to smiling and laughing, just like nothing happened. He's also cutting teeth right now (the bottom front two are already in!), and he's really not fussy or cranky. He gnaws on his fingers like crazy, but he's still always happy. Even when getting more than one at a time!! It's almost like he's saying, "Pain? This isn't pain...just annoying!" :)
I thank God each and every day for the gift that is Atticus. Not only for him being my son and sparing his life, but also for all the valuable lessons that I've learned along the way. I've drawn so much closer to God, and I've learned that He really is always in control. I'm continually amazed at the ways that He continues to bless us each day. Just as an example....I really needed to go to the grocery store the past few days, but I just haven't found the time with Atticus and all the appointments we've had this week. Also, we've been a little short on money because I've had to travel so much, and we've had to get a new faucet, service the air conditioner, etc. Well, one of the ladies that comes to Publix all the time, whom Valerie calls one of her "coupon ladies", came in to find out how Atticus had been doing since coming home. She brought Valerie a literal trunk full of groceries for us! Not only did she have food, but 2 whole bags of various non-grocery items like tissues, toilet paper, ziploc bags, etc that I had needed as well! I have never met this lady, and she had no way of knowing that I needed these things. But God bless her! It's just awesome how God works in our daily lives!
Thanks for everyone's continued prayers! We still have a long road ahead. I'll try to remember to update a little more regularly! As always, keep on prayin'!
Well, it's been a little while since my last Atticus update, so I just wanted to let everyone know what's been going on lately. First, Atticus turned 8 months old yesterday!! Where has the time gone?! It doesn't seem like he's been home for 2 1/2 months already...and it certainly doesn't seem like it's been 8 months ago since we began Atticus' journey with him. I am so thankful that I have had this long to spend with him, and that he is doing so incredibly well; especially after such a rough 1st month!
Well, what have we been up to lately? On this past Tuesday, June 1st, we went to Charleston to have a check-up with the folk from Peds Surgery that placed Atticus' G-tube. It was just basically showing me how to change his button (which I already knew how to do thanks to Wanda!) and to make sure everything looked good, see if we had any questions, etc. They were happy with everything, so he got a slightly bigger size button, and that was it. We also stopped by the PCICU to say hello to all our lovely nurses and docs--who were very happy to see that Atticus is doing so well, and getting so big! He's up to about 18.5 lbs and 28.5 inches long!!! My big boy!
Next, on Wednesday, we went to Columbia to visit Dr Williams with cardiology. Dr Williams was happy with the way Atticus' heart sounded, and decided not to do another echocardiogram because he said the poor boy has had to sit through enough of them. Plus, with him being so far out post-operatively; there was really no point. He didn't make any changes to Atticus' meds, and we'll be back to see him in about 2 months.
Then, on Thursday, we went back to Columbia to visit with Dr Brown from pulmonology. He was also very happy with Atticus. He said that he could tell a definite improvement in the sound of Atticus' lungs. He said it didn't sound like he was wheezing or rattling as much when he took a breath. He also decided to keep things as is on his meds, because he does still have a lot of healing to do with the Pulmonary Hypertension. He was so happy with his improvement, though, that we don't even have to back to visit him for another 4 months!! :) (Which makes my gas tank happy! LOL)
We've also been a few times to visit with Atticus regular pediatrician, Dr Goldberg. She is happy with the way Atticus is progressing, both physically and developmentally. She's been trying to slowly increase his feeds, and we've been continuing to try to feed Atticus at least a few bites of food by mouth. Sometimes he does better than others, but we keep trying!
Atticus has also starting receiving his Physical therapy, Occupational therapy, and speech therapy. PT works on his gross motor skills, OT works on his fine motor skills, and Speech works on his mouth...including working on helping him learn how to swallow, coordinate his tongue, etc. He has a lot of work to do to catch up on all areas of his development, but all the ladies have been fairly impressed with his attitude, his abilities, and his personality. We still have to follow up with his audiologist, Dr Little, to see what exactly she wants to do now that we know Atticus has moderate hearing loss in both ears, but she has said that whatever we decide; she wants it in place by the time he's 9 months old.
We'll have another 2 appointments in Charleston this upcoming Tuesday. One is for the high risk assesment, which just checks on his developmental delays, etc. And the other is another barium swallow study to see how he's progressing with the healing of his vocal chords and his ability to coordinate his swallowing. (Hint, hint to all my ladies in the PC!) I'll try to remember to update how those go sometime next week.
And finally, Atticus and the rest of us are adjusting nicely to being home. He's so alert and active; he continues to amaze me everyday. He's always so happy, no matter what he's going through, he is someone to learn from. He can just be choking and gaging during one of his feeds, but as soon as he's settled out; he's back to smiling and laughing, just like nothing happened. He's also cutting teeth right now (the bottom front two are already in!), and he's really not fussy or cranky. He gnaws on his fingers like crazy, but he's still always happy. Even when getting more than one at a time!! It's almost like he's saying, "Pain? This isn't pain...just annoying!" :)
I thank God each and every day for the gift that is Atticus. Not only for him being my son and sparing his life, but also for all the valuable lessons that I've learned along the way. I've drawn so much closer to God, and I've learned that He really is always in control. I'm continually amazed at the ways that He continues to bless us each day. Just as an example....I really needed to go to the grocery store the past few days, but I just haven't found the time with Atticus and all the appointments we've had this week. Also, we've been a little short on money because I've had to travel so much, and we've had to get a new faucet, service the air conditioner, etc. Well, one of the ladies that comes to Publix all the time, whom Valerie calls one of her "coupon ladies", came in to find out how Atticus had been doing since coming home. She brought Valerie a literal trunk full of groceries for us! Not only did she have food, but 2 whole bags of various non-grocery items like tissues, toilet paper, ziploc bags, etc that I had needed as well! I have never met this lady, and she had no way of knowing that I needed these things. But God bless her! It's just awesome how God works in our daily lives!
Thanks for everyone's continued prayers! We still have a long road ahead. I'll try to remember to update a little more regularly! As always, keep on prayin'!
Sunday, May 16, 2010
Quick update
Well, just a quick update for today. Atticus has offically been home for 2 months as of today. It seems so hard to believe. It seems like the days in the PCICU were so very long ago. Each day with Atticus is a little miracle. It seems that no matter what he goes through; he remains this little positive, happy guy. He can have a coughing fit, which causes him to throw up, and he's smiling and laughing again within moments of when he's finished. He is really a lesson to the rest of us.
I also wanted to update everyone on Atticus' hearing. We finally had a hearing test done, and we've discovered that Atticus does have moderate hearing loss in both ears. His right ear is slightly worse than his left ear, which really isn't surprising since most of the damage from the Cath procedure happened on his right side. The good news is that it's only moderate (vs severe or total), so it's completely manageable. We'll be following up with Dr Little (his audiologist) to see what exactly she wants to do about it. I know that whatever she decides to do; she had already said that she wants it done by the time Atticus reaches 9 months old to be able to give him the best shot at verbal/language skills. As always, keep on prayin'!
P.S. I'm going to upload some new pictures we had made of him this past Thursday! He is getting so big! And yes, he's still on oxygen, we just snuck off the air tube for the pictures!
I also wanted to update everyone on Atticus' hearing. We finally had a hearing test done, and we've discovered that Atticus does have moderate hearing loss in both ears. His right ear is slightly worse than his left ear, which really isn't surprising since most of the damage from the Cath procedure happened on his right side. The good news is that it's only moderate (vs severe or total), so it's completely manageable. We'll be following up with Dr Little (his audiologist) to see what exactly she wants to do about it. I know that whatever she decides to do; she had already said that she wants it done by the time Atticus reaches 9 months old to be able to give him the best shot at verbal/language skills. As always, keep on prayin'!
P.S. I'm going to upload some new pictures we had made of him this past Thursday! He is getting so big! And yes, he's still on oxygen, we just snuck off the air tube for the pictures!
Friday, May 7, 2010
Long overdue update
Ok. Sorry it's been so long since my last update. We've had a flurry of doctor's visits, and home visits to set up all the various therapies, etc. I'll try to make sure I cover everything!
Atticusis doing great since coming home. He's about 26.5 inches long and a touch over 16 lbs. We've seen his cardiologist, Dr Williams, and he's very happy with the way Atticus' heart looks & is performing. He hasn't made any changes to any of his medicines.
We also finally got a chance to see the pulmonologist, Dr Brown, and he's pretty happy with the way his lungs/pulmonary system look. Atticus does have pulmonary hypertension as a result of being on the ventilator for so lung, but Dr Brown think his lungs sound good considering all Atticus has been through. He didn't think it sounded like he had any fluid on his lungs, but he did think that they sounded a little wet. So he increased Atticus' QVAR (the steriod inhaler) up from 40mcg to 80mcg. Other than that, he didn't make any other changes to the Viagra. (Yes, it's ok to giggle at the fact Atticusis on Viagra. It's actually for his pulmonary system--the original use for it. It's really fun trying to explain to the insurance company why you need approval for a 7 month old to be on Viagra though!!) :)
We also met with the audiologist, Dr Little, about Atticus' hearing. She wants to see us again this upcoming Tuesday before she makes a final determination about his hearing. She said that he's not totally deaf, but she does believe there is some hearing loss. He would respond to her voice, but not to noises played at the same pitch. She also said that depending on the severity; she'll want to have him a hearing aid of some sort by 9 months old to give him the best opportunity for language & verbal skill development.
Then we also followed up with the neurologist, Dr Kinsman, back down at MUSC. He had another EEG performed. Thankfully, he said that there weren't any more seizures (visible or clinical), but that the blood flow to the frontal lobes was still slow, so he wasn't going to make any changes to Atticus' Keppra (the anti-seizure med). We had been hoping that we could start weaning down that one, but I guess it'll just have to wait.
Hmmmmm....what else? Oh yes. We've also visited withhis regular pediatrician, Dr Goldberg, several times now, and she couldn't be happier with him. She thinks he's been making excellent progress both in height and weight, and in physical development. He's now able to put his toes in his mouth, hold his head up on his own, reach for objects, grasp objects in 1 or 2 hands, and can almost completely turn himself over from his back to his stomach on both sides. He's just a miracle.
We've also had several in-home visits to determine his eligibility/evaluate him for physical therapy (PT), occupational therapy (OT), and speech therapy. We've been set up with BabyNetthrough the SC School for the Deaf and Blind, since they believe there's a problem with his hearing. We should hopefully get the services going in the next week or so.
We'll also be coming back to Charleston next week (May 14th for all my nurse friends that want to see him! wink, wink) to meet with the ENT (ears, nose, throat) folks at MUSC. I can tell that Atticus' vocal chords are beginning to slowly heal. He usually growls at different pitches to let you know his mood. (It's pretty cute--I call him my little Mogwhy (sp?)...you know...the little cute thing that turns into the Gremlins in the movies.) But lately he's started making the occasional squeak or coo that almost sounds like a normal voice! It just makes my heart soar to begin to be able to finally hear his voice!
I am humbled and amazed at all the wonderful people that have been praying for us and keeping us in their thoughts. I'd just like to say, "Thank You" again. God has granted us such a miracle in Atticus. He's has consistently beaten the odds when the doctor's didn't think he was going to make it. He continues to prove the healing power of God in his amazing rate of development and playing "catch-up" in what he should be able to do at his age. None of the doctors can believe he's so alert, interactive, and happy with all that he's been through. God is so awesome in so many ways. I can't help but be humbled everytime I wake up and look in Atticus' crib and see him sleeping peacefully there. It's still surreal, and it's been almost 2 months. Please continue to pray for Atticus. He still has a lot of recovering to do, and at least 1 more surgery on down the line. Please pray that he continues to grow stronger everyday, and that he continues to be a living testament of God's healing and mercy. Please also continue to pray for the rest of our family. Pray that we continue to have the strength, energy, and patience that is need. We'll be going back to church for the 1st time with Atticus this Sunday, for Mother's day (Lord willing). I know everyone there is just dying to meet this little boy that they've been praying for so hard! So pray that everyone stays healthy so that we can make it there!! I'll try to update more soon. As always....keep on prayin'!
Atticusis doing great since coming home. He's about 26.5 inches long and a touch over 16 lbs. We've seen his cardiologist, Dr Williams, and he's very happy with the way Atticus' heart looks & is performing. He hasn't made any changes to any of his medicines.
We also finally got a chance to see the pulmonologist, Dr Brown, and he's pretty happy with the way his lungs/pulmonary system look. Atticus does have pulmonary hypertension as a result of being on the ventilator for so lung, but Dr Brown think his lungs sound good considering all Atticus has been through. He didn't think it sounded like he had any fluid on his lungs, but he did think that they sounded a little wet. So he increased Atticus' QVAR (the steriod inhaler) up from 40mcg to 80mcg. Other than that, he didn't make any other changes to the Viagra. (Yes, it's ok to giggle at the fact Atticusis on Viagra. It's actually for his pulmonary system--the original use for it. It's really fun trying to explain to the insurance company why you need approval for a 7 month old to be on Viagra though!!) :)
We also met with the audiologist, Dr Little, about Atticus' hearing. She wants to see us again this upcoming Tuesday before she makes a final determination about his hearing. She said that he's not totally deaf, but she does believe there is some hearing loss. He would respond to her voice, but not to noises played at the same pitch. She also said that depending on the severity; she'll want to have him a hearing aid of some sort by 9 months old to give him the best opportunity for language & verbal skill development.
Then we also followed up with the neurologist, Dr Kinsman, back down at MUSC. He had another EEG performed. Thankfully, he said that there weren't any more seizures (visible or clinical), but that the blood flow to the frontal lobes was still slow, so he wasn't going to make any changes to Atticus' Keppra (the anti-seizure med). We had been hoping that we could start weaning down that one, but I guess it'll just have to wait.
Hmmmmm....what else? Oh yes. We've also visited withhis regular pediatrician, Dr Goldberg, several times now, and she couldn't be happier with him. She thinks he's been making excellent progress both in height and weight, and in physical development. He's now able to put his toes in his mouth, hold his head up on his own, reach for objects, grasp objects in 1 or 2 hands, and can almost completely turn himself over from his back to his stomach on both sides. He's just a miracle.
We've also had several in-home visits to determine his eligibility/evaluate him for physical therapy (PT), occupational therapy (OT), and speech therapy. We've been set up with BabyNetthrough the SC School for the Deaf and Blind, since they believe there's a problem with his hearing. We should hopefully get the services going in the next week or so.
We'll also be coming back to Charleston next week (May 14th for all my nurse friends that want to see him! wink, wink) to meet with the ENT (ears, nose, throat) folks at MUSC. I can tell that Atticus' vocal chords are beginning to slowly heal. He usually growls at different pitches to let you know his mood. (It's pretty cute--I call him my little Mogwhy (sp?)...you know...the little cute thing that turns into the Gremlins in the movies.) But lately he's started making the occasional squeak or coo that almost sounds like a normal voice! It just makes my heart soar to begin to be able to finally hear his voice!
I am humbled and amazed at all the wonderful people that have been praying for us and keeping us in their thoughts. I'd just like to say, "Thank You" again. God has granted us such a miracle in Atticus. He's has consistently beaten the odds when the doctor's didn't think he was going to make it. He continues to prove the healing power of God in his amazing rate of development and playing "catch-up" in what he should be able to do at his age. None of the doctors can believe he's so alert, interactive, and happy with all that he's been through. God is so awesome in so many ways. I can't help but be humbled everytime I wake up and look in Atticus' crib and see him sleeping peacefully there. It's still surreal, and it's been almost 2 months. Please continue to pray for Atticus. He still has a lot of recovering to do, and at least 1 more surgery on down the line. Please pray that he continues to grow stronger everyday, and that he continues to be a living testament of God's healing and mercy. Please also continue to pray for the rest of our family. Pray that we continue to have the strength, energy, and patience that is need. We'll be going back to church for the 1st time with Atticus this Sunday, for Mother's day (Lord willing). I know everyone there is just dying to meet this little boy that they've been praying for so hard! So pray that everyone stays healthy so that we can make it there!! I'll try to update more soon. As always....keep on prayin'!
Monday, March 29, 2010
An update from home!
Sorry it's been a little while since my last update, but it's been hectic trying to take over as not only a 24/7 nurse, but also stepping back into the role as a full-time mother to the other two children, wife, cook, housekeeper, etc. Not to mention we've had a million doctor's visits, home visits, appts for Home Care products such as oxygen tanks, feeding pumps, etc. Not that I'm complaining about any of it! I'm so happy to be home again. It seems almost surreal.
Thankfully, Atticus is adjusting fine to home life. His feeds are going better (he had a problem with throwing up after each feed when we first got started with his G-tube), and he's finally starting to slowly gain some weight. We've also been working on holding up his head on his own, turning over, and some tummy time. Sandy and Gideon are so happy to have us home. Sandy just wants to spend every moment with Atticus or myself. She wants to help do everything. She wants to help bathe him, put lotion on him, change diapers, start his feeding pump, give his meds, etc. She's so eager to help, she even started his feeding pump this morning before I even had it attached to him! LOL She's so sweet. Gideon is also warming up to Atticus and having him home. He's even helped throw away a few diapers, hold a bottle, and even gave him a kiss today.
I just wanted to also take this time to say "Thank You" to all those who've been praying for so long with us for this time. I am humbled by all the prayers, phone calls, cards, emails, donations, etc to help us through this time. So many of you are praying for us, and I've never even met you! It is just amazing to know that Atticus has this army of folks pulling for him all around the world. Please take the time to sign the Guestbook, if you've never done it. I'd love to see who is checking up on our little man, and let him know who his fans are around the world.
God has blessed us greatly, even with all we've been through. It's drawing close to Easter time, and I am humbled once again. With all that Atticus has suffered; God let His ONLY Son, Jesus, suffer even more than that. He has spared the life of my son, where He did not even spare the life of His own. He has given me the desires of my heart...to have all my children home under one roof. Well, it's almost time to give Atticus his last med for the night, then off to bed for me. Thank you all for your prayers. Please continue to pray for Atticus and our family. He still has a long road ahead of him; though we celebrate the victories of today! As always, keep on prayin'!
Thankfully, Atticus is adjusting fine to home life. His feeds are going better (he had a problem with throwing up after each feed when we first got started with his G-tube), and he's finally starting to slowly gain some weight. We've also been working on holding up his head on his own, turning over, and some tummy time. Sandy and Gideon are so happy to have us home. Sandy just wants to spend every moment with Atticus or myself. She wants to help do everything. She wants to help bathe him, put lotion on him, change diapers, start his feeding pump, give his meds, etc. She's so eager to help, she even started his feeding pump this morning before I even had it attached to him! LOL She's so sweet. Gideon is also warming up to Atticus and having him home. He's even helped throw away a few diapers, hold a bottle, and even gave him a kiss today.
I just wanted to also take this time to say "Thank You" to all those who've been praying for so long with us for this time. I am humbled by all the prayers, phone calls, cards, emails, donations, etc to help us through this time. So many of you are praying for us, and I've never even met you! It is just amazing to know that Atticus has this army of folks pulling for him all around the world. Please take the time to sign the Guestbook, if you've never done it. I'd love to see who is checking up on our little man, and let him know who his fans are around the world.
God has blessed us greatly, even with all we've been through. It's drawing close to Easter time, and I am humbled once again. With all that Atticus has suffered; God let His ONLY Son, Jesus, suffer even more than that. He has spared the life of my son, where He did not even spare the life of His own. He has given me the desires of my heart...to have all my children home under one roof. Well, it's almost time to give Atticus his last med for the night, then off to bed for me. Thank you all for your prayers. Please continue to pray for Atticus and our family. He still has a long road ahead of him; though we celebrate the victories of today! As always, keep on prayin'!
Monday, March 15, 2010
I can't sleep
I can't sleep right now. Sandy and Gideon are off to spend the next two nights with Grandma Hemrick & Aunt Isabelle. Robbie and I are off to Charleston tomorrow to bring Atticus home for the first time ever! One night at my Dad's in Mt P (so we can be close to the hospital for the 1st night, and so that they can have a night to love on Atticus after housing me and taking care of me for the last 5 months), then home to Aiken! Thanks to Uncle Sam who will let Robbie take three days off so that we can have a few days together with all the kids for the first time (hope we have enough to make a down payment on a new house, though! lol).
But Thanks most of all to such an awesome God that has made this situation what it has been. I have certainly found myself drawn closer to the Lord than I ever thought possible. Thank you all for your many prayers. Atticus has been through so much in the last 5 months that it seems almost surreal that he is finally coming home for the first time. I feel humbled to know that so many people are pulling for my little man, and that you have shared his story with other people who are pulling for him that we've never even met. I'm trying to get to sleep, but I'm just too full of anticipation, joy, and overwhelming gratefulness....I really think I'm going to burst. The hospital gave Atticus a little heart pillow that people can write messages on, after his first heart surgery. I left it down in the PCICU for all the doctors and nurses to sign. Various family members had already signed it, but now, I don't think you could possibly fit another signature on it. Some messages are short, others take up enitre sections of the pillow, but they all show the depth to which this little man's story has reached out to so many people already in such a realtively short time. As I often repeat, Atticus' story is one of God's amazing healing power, the power of prayer, and God's awesome grace. He blessed us in all aspects of this leg of our journey. from not having to worry about a place to stay (Thanks Dad and Crissie) to not having to worry about my other children's care (Thanks my wonderful Hubbie, Mom, Sister, Mother-in-law, and Sister-in-law), to having a wonderful husband to stand by my side through many "for better or for worse" moments, to a supporting church family and friends that helped us through so many means (prayers, money, cards, calls, food, baby sitting, advice, and on and on and on....),to the wonderful doctors, nurses, surgeons, respiratory techs, and staff that care so deeply in seeing Atticus get better and that have invested so much of themselves in him, to those who kept me sane through the diffcult times you all know who you are ;).
I am simply overwhelmed. There is still a long road ahead. But I am stopping to celebrate today. This is a major answer to my prayers. I look at the crib in our room and realize that it won't be long until it's no longer empty. That soon I won't be driving back and forth, leaving part of my family no matter which way I was traveling. All 3 children will be home under my roof. I will be home with my husband. We have so much to be grateful for, that I don't think all of cyberspace could contain it. I think I've finally managed to stay up long enough to make myself tired. Gotta try to get some sleep before we have to get on the road! Good nite to all! And as always...Keep on prayin'!! :)
But Thanks most of all to such an awesome God that has made this situation what it has been. I have certainly found myself drawn closer to the Lord than I ever thought possible. Thank you all for your many prayers. Atticus has been through so much in the last 5 months that it seems almost surreal that he is finally coming home for the first time. I feel humbled to know that so many people are pulling for my little man, and that you have shared his story with other people who are pulling for him that we've never even met. I'm trying to get to sleep, but I'm just too full of anticipation, joy, and overwhelming gratefulness....I really think I'm going to burst. The hospital gave Atticus a little heart pillow that people can write messages on, after his first heart surgery. I left it down in the PCICU for all the doctors and nurses to sign. Various family members had already signed it, but now, I don't think you could possibly fit another signature on it. Some messages are short, others take up enitre sections of the pillow, but they all show the depth to which this little man's story has reached out to so many people already in such a realtively short time. As I often repeat, Atticus' story is one of God's amazing healing power, the power of prayer, and God's awesome grace. He blessed us in all aspects of this leg of our journey. from not having to worry about a place to stay (Thanks Dad and Crissie) to not having to worry about my other children's care (Thanks my wonderful Hubbie, Mom, Sister, Mother-in-law, and Sister-in-law), to having a wonderful husband to stand by my side through many "for better or for worse" moments, to a supporting church family and friends that helped us through so many means (prayers, money, cards, calls, food, baby sitting, advice, and on and on and on....),to the wonderful doctors, nurses, surgeons, respiratory techs, and staff that care so deeply in seeing Atticus get better and that have invested so much of themselves in him, to those who kept me sane through the diffcult times you all know who you are ;).
I am simply overwhelmed. There is still a long road ahead. But I am stopping to celebrate today. This is a major answer to my prayers. I look at the crib in our room and realize that it won't be long until it's no longer empty. That soon I won't be driving back and forth, leaving part of my family no matter which way I was traveling. All 3 children will be home under my roof. I will be home with my husband. We have so much to be grateful for, that I don't think all of cyberspace could contain it. I think I've finally managed to stay up long enough to make myself tired. Gotta try to get some sleep before we have to get on the road! Good nite to all! And as always...Keep on prayin'!! :)
Thursday, March 11, 2010
Our first trip outside!
Hello everyone!
I meant to post this yesterday, but Atticus just did not want to got to sleep last night! :) He was too busy playing and laughing. But he had had a rather exciting day yesterday. First, we got to go to the Children's Atrium and meet THE CAT IN THE HAT!! And yes it was THE cat. Apparently his "handler" is personal friends with Dr Seuss' second wife, who loans her the costume to go to various children hospitals and brighten the day of the patients. How cool!
Then, we got to take our very first trip outside!!!! This was very special to me because Atticus has never been out in the fresh air before. It also shows how well he is doing! They were willing to let him go outside with only an air tank...and no monitors!!! :) Atticus was asleep on the trip down the elevator, but when we went outside and the strong warm breeze hit his face, his little eyes just popped open! He started looking around like, "What is THAT??!" He dozed some more as we strolled around the circle in front of the hospital, and we eventually came upstairs.
Later the ladies from OT (Occupational Therapy) and PT (Physical Therapy) dropped by to work with him and give him some exercise and practice on holding his head up, rotating his joints, putting some weight on his feet, etc. You would think that all that excitement would just wear him out, but not my little man! He decided that there was too much that he might miss out on and didn't go to sleep until almost 1AM!!
The doctors also gave us some good news, and some not so great news yesterday. The good news is that it looks like Monday will be the big day!!! :) He won't make it home for Gideon's birthday, but the more I got to thinking about it; that may be a good thing too. That way Gideon can have all my attention on his birthday, which he has largely been without for the last 5 months. Again, God's timing is perfect in all things. (It also gives me the opportunity to take a lot of my & his things home and put them away before we come home with medical equipment, etc) The not so great news I already posted a little while ago. Atticus has not passed his last two hearing screens. They don't know yet how severe this means his hearing loss is. He'll have a follow up visit sometime in the near future with an Audiologist, to determine exactly that. A little silver lining though; the doctors did say that it would be very unusual for complete hearing loss...especially since he's given signs through out his time at MUSC that he could hear people's voices, and would react to loud noises. There's just no way to tell until he has his follow up visit. Please keep praying for Atticus, and for me. Pray that his hearing loss is not severe, and if it is, that I can learn sign language fairly easily!! :)
I meant to post this yesterday, but Atticus just did not want to got to sleep last night! :) He was too busy playing and laughing. But he had had a rather exciting day yesterday. First, we got to go to the Children's Atrium and meet THE CAT IN THE HAT!! And yes it was THE cat. Apparently his "handler" is personal friends with Dr Seuss' second wife, who loans her the costume to go to various children hospitals and brighten the day of the patients. How cool!
Then, we got to take our very first trip outside!!!! This was very special to me because Atticus has never been out in the fresh air before. It also shows how well he is doing! They were willing to let him go outside with only an air tank...and no monitors!!! :) Atticus was asleep on the trip down the elevator, but when we went outside and the strong warm breeze hit his face, his little eyes just popped open! He started looking around like, "What is THAT??!" He dozed some more as we strolled around the circle in front of the hospital, and we eventually came upstairs.
Later the ladies from OT (Occupational Therapy) and PT (Physical Therapy) dropped by to work with him and give him some exercise and practice on holding his head up, rotating his joints, putting some weight on his feet, etc. You would think that all that excitement would just wear him out, but not my little man! He decided that there was too much that he might miss out on and didn't go to sleep until almost 1AM!!
The doctors also gave us some good news, and some not so great news yesterday. The good news is that it looks like Monday will be the big day!!! :) He won't make it home for Gideon's birthday, but the more I got to thinking about it; that may be a good thing too. That way Gideon can have all my attention on his birthday, which he has largely been without for the last 5 months. Again, God's timing is perfect in all things. (It also gives me the opportunity to take a lot of my & his things home and put them away before we come home with medical equipment, etc) The not so great news I already posted a little while ago. Atticus has not passed his last two hearing screens. They don't know yet how severe this means his hearing loss is. He'll have a follow up visit sometime in the near future with an Audiologist, to determine exactly that. A little silver lining though; the doctors did say that it would be very unusual for complete hearing loss...especially since he's given signs through out his time at MUSC that he could hear people's voices, and would react to loud noises. There's just no way to tell until he has his follow up visit. Please keep praying for Atticus, and for me. Pray that his hearing loss is not severe, and if it is, that I can learn sign language fairly easily!! :)
Tuesday, March 9, 2010
Only 1 step away.....
Hello everyone! Atticus certainly had a big day today. He started by having a swallow study done to see how well his vocal chords work, and of course, how well he can swallow. He got an 8 out of 10, which impressed the doctors because most babies that have been on a ventilator for so long generally don't manage to get anything down. He did really well with the thicker concentration (like a milkshake), and really bad with the thin concentration (like milk). All in all, it went well.
The other great news today is that we have offically gone to the step down unit, 7C!!!!!!! HOOOOOOORRRRRRAAAAAAAAAAYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!! This is a huge step for Atticus! This means that we are only 1 step away from home. We have been waiting a loooong 5 months for this day. It still seems surreal that we've actually made it here to 7C. I'm still praying that Atticus can come home by the end of this week. It would be a huge blessing to have all 3 of my children home in time for Gideon's 3rd birthday on Sunday, March 14th. If not, we've waited this long, it won't kill us to wait a little longer. I'm just grateful that we've it out of the PCICU. I've started taking over giving Atticus his feeds and meds. Not as bad as I thought it would be. He also got "unplugged" from his IV today. It's so awesome to be able to just scoop him up whenever I want to. I also am bunking in room from here on out. They have a pull out couch, shower, etc in room, which is nice.
Thank you so much for the phone calls, emails, cards, visits, and the MANY prayers! God has truly worked many miracles for Atticus. Please continue to pray that Atticus can come home soon, and that he can stay home!!! (At least until his next surgery) I am so humbled to know that there are so many of you out there praying for our little guy. Even those that have never met us personally. Thank you all again for everything you've done, and as always....Keep on prayin'!
The other great news today is that we have offically gone to the step down unit, 7C!!!!!!! HOOOOOOORRRRRRAAAAAAAAAAYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!! This is a huge step for Atticus! This means that we are only 1 step away from home. We have been waiting a loooong 5 months for this day. It still seems surreal that we've actually made it here to 7C. I'm still praying that Atticus can come home by the end of this week. It would be a huge blessing to have all 3 of my children home in time for Gideon's 3rd birthday on Sunday, March 14th. If not, we've waited this long, it won't kill us to wait a little longer. I'm just grateful that we've it out of the PCICU. I've started taking over giving Atticus his feeds and meds. Not as bad as I thought it would be. He also got "unplugged" from his IV today. It's so awesome to be able to just scoop him up whenever I want to. I also am bunking in room from here on out. They have a pull out couch, shower, etc in room, which is nice.
Thank you so much for the phone calls, emails, cards, visits, and the MANY prayers! God has truly worked many miracles for Atticus. Please continue to pray that Atticus can come home soon, and that he can stay home!!! (At least until his next surgery) I am so humbled to know that there are so many of you out there praying for our little guy. Even those that have never met us personally. Thank you all again for everything you've done, and as always....Keep on prayin'!
Thursday, March 4, 2010
Can you say....EXTUBATION?!?!!!
I have such amazing and awesome news to share with everyone!! Atticus came off the ventilator Tuesday night just before 10PM. He's on vapo therm right now, so he'll still have to get weaned down to just a nasal canula, but they've already started turning it down. He's already back off a lot of the medicines they had given him, and they've already begun to feed Atticus through his new G-tube. They're starting veeeerry slowly for him, because he tends to have trouble whenever anything new happens with his feedings. He was alert and awake today, full of smiles and playing with his toys.
The other great news is that Robbie and I spoke with the social worker and the nurse coordinator today...and they feel that Atticus will be able to go home in 2 to 3 weeks!!!!! Thank you, GOD!!! Thank you, GOD!!! Thank you, GOD!!! I am so happy I think I'm going to burst with anticipation!! It seems surreal to think that about 4 months ago almost to the day, the hospital was telling Robbie to come to Charleston because they didn't think Atticus was going to make it. God works miracles--Atticus is LIVING proof!! The ladies told me to come home to Aiken through the weekend, and get everything in order that needs to be taken care of before Atticus comes home. Hopefully on Monday, Atticus should finally go to the step-down unit (7-C), which means I'll start needing to be there 24/7. This is where I'll learn how to take care of things like his G-tube, his meds and their schedule, any equipment he'll go home with, etc. The only thing is that Gideon's birthday is March 14th. It shouldn't be a problem for me to come home that day, but it would be even more awesome if Atticus was able to come home a day or so before that!! Again, I know God's timing is perfect in all things. Pray that this transition goes smoothly, and that Robbie and I can be together again soon with all 3 children under the same roof for the very first time!! And that I'll be able to get some sleep between now and then. :) Keep on prayin'---it's powerful stuff!!!
The other great news is that Robbie and I spoke with the social worker and the nurse coordinator today...and they feel that Atticus will be able to go home in 2 to 3 weeks!!!!! Thank you, GOD!!! Thank you, GOD!!! Thank you, GOD!!! I am so happy I think I'm going to burst with anticipation!! It seems surreal to think that about 4 months ago almost to the day, the hospital was telling Robbie to come to Charleston because they didn't think Atticus was going to make it. God works miracles--Atticus is LIVING proof!! The ladies told me to come home to Aiken through the weekend, and get everything in order that needs to be taken care of before Atticus comes home. Hopefully on Monday, Atticus should finally go to the step-down unit (7-C), which means I'll start needing to be there 24/7. This is where I'll learn how to take care of things like his G-tube, his meds and their schedule, any equipment he'll go home with, etc. The only thing is that Gideon's birthday is March 14th. It shouldn't be a problem for me to come home that day, but it would be even more awesome if Atticus was able to come home a day or so before that!! Again, I know God's timing is perfect in all things. Pray that this transition goes smoothly, and that Robbie and I can be together again soon with all 3 children under the same roof for the very first time!! And that I'll be able to get some sleep between now and then. :) Keep on prayin'---it's powerful stuff!!!
Friday, February 26, 2010
Some GREAT News!
Sorry it's been so long since my last update, but I'm hoping you'll all forgive me. :) I have great news to report aboout Atticus. He has now been extubated (off the ventilator) for over 6 days!! He's just got a little oxygen tube that runs under his nose, and is breathing wonderfully on his own! God has been so wonderful to us! The doctors are amazed and extremely excited with Atticus' progress. They believe that he seems to have finally turned a corner, and they are even beginning to discuss the game plan for transitioning us towards home! It won't be a quick process, nothing with Atticus is, but we are excited that it is on the table now. God has also blessed in some recent physical developments by Atticus. Atticus has been able to reach for objects and touch them. This is such a miracle because the last brain bleeds that Atticus had were over the vision center of his brain, and the doctors were afraid that he might end up blind. But God has spared Atticus' vision as he has proven beyond all doubt now because he is able to display hand/eye coordination. His leg has also healed incredibly well. There is a long scar on the outside of his leg, but it is so amazing because again, the doctors believed at the beginning that he might lose his leg due to a lack of circulation. Other than the scar, and a little bit of splotchy coloring, you'd never know. He can move it and kick it and wiggle his toes. The doctors are now working on feeding Atticus' stomach instead of his intestines. Normally Atticus has a lot of trouble whenever they change anything about his feedings, but everything is going well so far this time. They are beginning to compress his feedings so that he is getting more food in less time (like a normal feeding schedule). His stomach seems to be tolerating it all well also. He has extremely bad acid reflux, but he is on several meds for these. (Atticus does mean "father-like"...lol) Atticus is God's miracle to me and Robbie. He has revealed His healing power, and His amazing grace on too many occasions to number. I am humbled to be blessed so greatly. Thank you all for your many prayers. I'm trying to attach some photos to this email so that you can see who you've all been praying so diligently for. Please continue to pray for our family. He still has much to do before we are finally able to bring him home.
Sunday, February 7, 2010
Another step backwards
Hello everyone!
Sorry it's been so long since my last update. Atticus is doing well. He's had an interesting last few days. As I mentioned before, the CT scan was positive, and they don't think he needs any kind of procedure/surgery right now because the narrow spots aren't causing any blockage to the blood flow. They did have to put a PD (Perinatal Drain sp?) back in his belly. He was starting to have a hard time breathing. They've gotten over 600cc of fluid off his abdomen. The doctors were hoping that if they waited; they could force Atticus' body to reabsorb the fluid,They believe he's getting close to getting off the ventilator, and they didn't want to ruin his chances of getting off. But his breathing has slowed back down to the 30s and 40s bpm, and his heart rate is back to around 147 bpm, and his oxygen sats have been better because he can take deeper breaths. He'll still have to be on it for another week or two, but it's getting close--if all goes well. Please keep praying for Atticus. He's made it through so much already. I"m still hoping for a sort of miracle that we can all be home together for Gideon's 3rd birthday on March 14th. That would be a dream come true. Talk to everyone soon!
Sorry it's been so long since my last update. Atticus is doing well. He's had an interesting last few days. As I mentioned before, the CT scan was positive, and they don't think he needs any kind of procedure/surgery right now because the narrow spots aren't causing any blockage to the blood flow. They did have to put a PD (Perinatal Drain sp?) back in his belly. He was starting to have a hard time breathing. They've gotten over 600cc of fluid off his abdomen. The doctors were hoping that if they waited; they could force Atticus' body to reabsorb the fluid,They believe he's getting close to getting off the ventilator, and they didn't want to ruin his chances of getting off. But his breathing has slowed back down to the 30s and 40s bpm, and his heart rate is back to around 147 bpm, and his oxygen sats have been better because he can take deeper breaths. He'll still have to be on it for another week or two, but it's getting close--if all goes well. Please keep praying for Atticus. He's made it through so much already. I"m still hoping for a sort of miracle that we can all be home together for Gideon's 3rd birthday on March 14th. That would be a dream come true. Talk to everyone soon!
Congenital Heart Disease Awareness Week
Congenital Heart Disease awareness week starts today. CHD's affect nearly one out of 125 babies born in the U.S. every year. Atticus is one of the 125. (He's condition affects 1 out of 10,000.) Please help us raise awareness as CHD's are the most common birth defect, and the leading cause of birth defect related losses.... February 7-14 is CHD awareness week!
Saturday, February 6, 2010
Quick update
Quick update. Got full results of CT from docs and everything looks good. 2 spots that are kinda narrow, but nothing that time won't fix. They aren't causing any blockage, so that's a good thing. He's swollen, but they're trying to make his body reabsorb the fluid vs just draining it, and having to repeat that step.... Still doing good on his CPAP trials. More in AM. Nite.
Thursday, February 4, 2010
Good news/bad news
Well, we have some good news and some not so great news. The good news is that the docs are continuing to chip away at the ventilator, and have even started CPAP trials again. The not such great news is that the initial results from the CT show that his pulmonary arteries are kinda small, which is why his O2 sats aren't as great as they would like. Keep prayin' and I'll update more as we find out.
Monday, February 1, 2010
Not much change
I wish I could say that Atticus was doing much better, but he's not yet. He's still very swollen, although that has gone down ever so slightly. His O2 sats were better today, and he wasn't having to breathe quite so hard. They did another CT Angio on him today, but I haven't had a chance to talk with the doctors about... the results yet. Please keep prayin' for him! I'll update about the CT when I find out something.
Friday, January 29, 2010
A rough few days
Well, Atticus has had a rough couple of days. He's really swollen again, and his belly is super bloated. He's always mad when he wakes up, and I think it's from the pain of the swelling. His heart rate has also been high, he's been pukey, and he's breathing fast. They increased his methadone (sub for morphine) b/c they thought he might be having withdrawals from the morphine. It seemed to help some. His heart rate went down by about 12 bpm, and his breathing is still a little fast, but better. They're not sure what's causing the swelling though. They're doing ultrasounds and x-rays basically each day. They see some fluid build up in his abdomen, but not a "pocket" that they could place the drain back in to get rid of it. So they're also putting him back on an IV Diaril (sp?) and Lasixs to hopefully help the swelling go down. Please continue to pray for Atticus; he still has a lot of healing to go. Also please pray for Sandy and Gideon. They miss their mommy (and I miss them!), and apparently Sandy was moping and crying around the house all day for me. As I've said before, we know that God has a plan for us. Just pray that we can all be together as a family soon! :)
Monday, January 25, 2010
Quick update
Quick update on Atticus. He's still doing fine. No more excitement for him after he extubated himself. They are slowly weaning down his ventilator. They were able to reduce the pressure support by 1 more today. Again, baby steps, but they're all in the right direction. Please keep prayin'!
Sunday, January 24, 2010
Prayers for the Wilson Family
Please pray for the Wilson family. Their son, Josiah Nathaniel Wilson, passed away this afternoon. Josiah was born with HLHS, and an additional complication of an intact Atrial Septim. They are wonderful christian people, and Erin has always been an inspiration to me, as Josiah had been there for 8 months. They also have 2 young daughters at home. Please pray for this family as they grieve. I cannot imagine the emotions they must all be going through.
Saturday, January 23, 2010
So Atticus extubates himself....again!
Well, apparently Atticus decided to give his nurse a hard time this morning. Laura (one of his regular nurses-she's very good) noticed that he was mad/irritated, so she turned around to go his little medicine drawer and get him something to calm him down. Well, as she walked away, she noticed she suddenly heard him crying (which is unusual because the ventilator tube goes between the vocal chords, so normally he can't make any noise when he cries) and heard the alarm go off on his monitor because his oxygen saturation was dropping. He had extubated himself! Respiratory came in and got him calm, and gave him just the oxygen tubes under his nose, because he had been CPAPing for the last few days anyway. He did pretty well, he managed to keep his oxygen saturation numbers in the low 60s. Which, isn't too bad, since even on the ventilator his numbers have only been in the high 60s. Eventually though, he had to go back on the ventilator because he was just having to work too hard to breathe. But, Respiratory thinks it won't be too much longer until Atticus can come off the ventilator. *Hooray! Oh please! Oh Please! Oh Please! That would make my day, week, year!* Everyone please continue to pray, send healing thoughts, well wishes, etc! Atticus continues to make steps forward everyday.
Monday, January 18, 2010
One less tube
Atticus is still taking tiny baby steps forward. They removed the belly drain last night, but when they did about 100 cc of fluid came out too. So they're gonna do another ultrasound to make sure they can leave it out. Supposed to have another routine echocardiogram today too. Having trouble with his O2 sats, so he's still really high on the ventilator. Please keep praying for Atticus, as he still has a LOT of healing to do.
Wednesday, January 13, 2010
Post-Glenn Update
I'm sorry I didn't have a chance to post yesterday, or earlier today, but we got home pretty late last night, and there were some other results I was waiting on before I sent this out.
God has truly blessed us. Atticus sailed through his surgery with flying colors. Dr Hsia (pronounced Shaw) was able to perform the Glenn procedure, fix the fold in his aorta, and repair the bulge/small aneurism in one of the blood vessels leading off the aorta. Everything went smoothly; except they had a little trouble getting his bleeding under control at the end of the surgery, which is still normal for Atticus (due to his low platelet count). They were even able to go ahead and close his chest before leaving the OR!! We also got the results back from the head ultrasound today, and God has protected Atticus once again, and there are no new brain bleeds! The pressures in his heart following the surgery had gone from an earlier 15 to a great 4 or 5. This is wonderful because they feel several of his other complications, such as the fluid build up in his abdomen, were a result from the high pressure in his heart and pulmonary arteries. The pressure rose again today, but that was to be expected because his swelling will continue to rise for the first 48 hours. They've already resumed his feedings and are starting to wean down his ventilator. He is still VERY swollen, but that's also to be expected.
Thank you all for the many prayers that went up for Atticus and our family yesterday. It continues to lift my spirit to see what wonderful people God has surrounded us with. Atticus is truly working God's plan already as a living testament to the power of prayer, as the doctors and all extremely happy and surprised at how well he has been doing. Please continue to keep us all and especially Atticus in your prayers, as he has a lot of healing to do now. Please also continue to pray for all the doctors and nurses that care for Atticus, as they are all wonderful people.
God has truly blessed us. Atticus sailed through his surgery with flying colors. Dr Hsia (pronounced Shaw) was able to perform the Glenn procedure, fix the fold in his aorta, and repair the bulge/small aneurism in one of the blood vessels leading off the aorta. Everything went smoothly; except they had a little trouble getting his bleeding under control at the end of the surgery, which is still normal for Atticus (due to his low platelet count). They were even able to go ahead and close his chest before leaving the OR!! We also got the results back from the head ultrasound today, and God has protected Atticus once again, and there are no new brain bleeds! The pressures in his heart following the surgery had gone from an earlier 15 to a great 4 or 5. This is wonderful because they feel several of his other complications, such as the fluid build up in his abdomen, were a result from the high pressure in his heart and pulmonary arteries. The pressure rose again today, but that was to be expected because his swelling will continue to rise for the first 48 hours. They've already resumed his feedings and are starting to wean down his ventilator. He is still VERY swollen, but that's also to be expected.
Thank you all for the many prayers that went up for Atticus and our family yesterday. It continues to lift my spirit to see what wonderful people God has surrounded us with. Atticus is truly working God's plan already as a living testament to the power of prayer, as the doctors and all extremely happy and surprised at how well he has been doing. Please continue to keep us all and especially Atticus in your prayers, as he has a lot of healing to do now. Please also continue to pray for all the doctors and nurses that care for Atticus, as they are all wonderful people.
Tuesday, January 12, 2010
Glenn Procedure Day.....
Well, it's the big day. Atticus is getting ready to have his Glenn Procedure done. And Dr Hsia has to fix a few other problems too. He has to repair the fold in the aorta, which happened as a result of the Norwood Procedure, and he has to fix the bulge in one of the minor blood vessels. We just got the first page and Atticus is stable and they're getting ready to begin the surgery. (Apparently every other Tuesday is "late start" day in the OR, so that's why they're just getting started. We should hopefully get another update in about an hour, so we'll post more after the surgery. Keep up the prayers.
Thursday, January 7, 2010
Long update....
Atticus is doing so well since my last post. He's had no more seizures since the last post. His leg is almost completely healed now. His skin wounds are all healing nicely, and the large one on his chest that once require the wound-vac is now even uncovered and almost completely healed. Atticus has even been awake and alert, looking around the room and at his various toys. He can track things with his eyes, and God has even given me the great blessing of seeing him smile. In general, he's been on a constant upward swing in the road to recovery, and a testament everyday to the healing power of prayer and God's mercy.
However, the doctors have decided to go ahead with the next stage of his heart surgery (the Glenn Procedure). The problem is that Atticus has kind of gotten stuck in his healing process. He had another Cath procedure two weeks ago (which was completely complication free, thankfully!) and they had to balloon his Aorta, because there was a small narrowing, which was causing a bottleneck effect and causing him to have a lot of backflow of blood in his heart. They were hoping that this would also correct the problem he's been having with a lot of fluid build-up in his abdomen (due to the increased pressure and backflow of the heart). It slowed some of the fluid drainage, but it didn't solve the problem. The doctors also took the pressure measurements that they would need for the Glenn Procedure during this Cath. The surgeon, Dr Hsia, told me that Atticus is not an ideal candidate for this next procedure. The pressures in his heart and his pulmonary arteries are higher than they would like when they do this surgery. He's also younger than they normally perform this surgery, which is typically around 6 months old. However, it's a Catch 22. His pressures need to be lower for the surgery, but they don't think they'll get any lower unless he has this next surgery. Also, if they didn't go ahead with the surgery, he would have a constant drainage tube coming out of his abdomen for 3 more months, which greatly increase the risk of complication due to some sort of infection. Basically, Atticus' body is telling them that he needs the next surgery, but it's just going to be riskier. He is scheduled for the next surgery on this upcoming Tuesday, January 12th. It all seems very sudden, but I am hopeful that this will be the turning point for Atticus so that he can finally get strong enough to come home. He will also have a CT-Angio tomorrow to look at his Aorta, and so that the surgeons can get a good game plan for his upcoming surgery. It's nothing invasive; they just run some dye through his IV and take a CT Scan of his heart to get a good picture of it.
Please pray for Atticus, his surgeons, doctors, and nurses. Pray that God gives him the strength he needs to persevere through the surgery, and that he'll continue to improve and be able to come home soon. Please also pray for Robbie and myself that we can continue to be strong through these times. We always trust that God has a plan for Atticus and that He will never leave his side. God has already brought him through so much. Thank you for the prayers, the calls, the emails, the visits, the love, and the support. I thank God everyday for surrounding us with such wonderful people.
However, the doctors have decided to go ahead with the next stage of his heart surgery (the Glenn Procedure). The problem is that Atticus has kind of gotten stuck in his healing process. He had another Cath procedure two weeks ago (which was completely complication free, thankfully!) and they had to balloon his Aorta, because there was a small narrowing, which was causing a bottleneck effect and causing him to have a lot of backflow of blood in his heart. They were hoping that this would also correct the problem he's been having with a lot of fluid build-up in his abdomen (due to the increased pressure and backflow of the heart). It slowed some of the fluid drainage, but it didn't solve the problem. The doctors also took the pressure measurements that they would need for the Glenn Procedure during this Cath. The surgeon, Dr Hsia, told me that Atticus is not an ideal candidate for this next procedure. The pressures in his heart and his pulmonary arteries are higher than they would like when they do this surgery. He's also younger than they normally perform this surgery, which is typically around 6 months old. However, it's a Catch 22. His pressures need to be lower for the surgery, but they don't think they'll get any lower unless he has this next surgery. Also, if they didn't go ahead with the surgery, he would have a constant drainage tube coming out of his abdomen for 3 more months, which greatly increase the risk of complication due to some sort of infection. Basically, Atticus' body is telling them that he needs the next surgery, but it's just going to be riskier. He is scheduled for the next surgery on this upcoming Tuesday, January 12th. It all seems very sudden, but I am hopeful that this will be the turning point for Atticus so that he can finally get strong enough to come home. He will also have a CT-Angio tomorrow to look at his Aorta, and so that the surgeons can get a good game plan for his upcoming surgery. It's nothing invasive; they just run some dye through his IV and take a CT Scan of his heart to get a good picture of it.
Please pray for Atticus, his surgeons, doctors, and nurses. Pray that God gives him the strength he needs to persevere through the surgery, and that he'll continue to improve and be able to come home soon. Please also pray for Robbie and myself that we can continue to be strong through these times. We always trust that God has a plan for Atticus and that He will never leave his side. God has already brought him through so much. Thank you for the prayers, the calls, the emails, the visits, the love, and the support. I thank God everyday for surrounding us with such wonderful people.
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