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'!
Thursday, June 24, 2010
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!! :)
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