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'!
Monday, March 29, 2010
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!!!
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