tag:blogger.com,1999:blog-13260540392449670892024-03-08T02:14:56.845-05:00The Williams FamilyClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-1326054039244967089.post-68212048430359851742011-08-03T11:12:00.000-04:002011-08-03T11:12:12.188-04:00What a Difference a Year MakesDear Friends:<br />
<br />
I am so sorry that it has been 6 months since my last post. I WILL do better with keeping you all updated on the happenings of the Williams family. We are all doing well and have had a lot of changes take place lately.<br />
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As I reflect over the last year, I am amazed. Exactly one year ago today, Emory had his open heart surgery. If I went into detail of everything that led up to his surgery, you would be reading a book, so I'll refrain from that today =). The day began with us getting up very early after sharing a "couch" in Emory's hopsital room at Egleston. We spent time with Emory praying over him and then my parents and our pastor (Pastor Al) arrived. We walked down several different hallways and then went to a small area where we sat and waited. This area was not an official waiting room.....it was just a side room off the hallway and just before you walked through the doors to go back into the surgery area. The nurse came out and we had to hand Emory over to her. We just passed him on with his blanket and she carried him back in her arms.<br />
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I think that part was harder for Claude than it was for me. Honestly, I was nervous, but also so relieved. I mean, they were going to stop his heart and that would make anyone nervous. But, Emory had struggled so much before the surgery with eating, breathing, reflux, weight gain, etc. that if it meant that having open heart surgery would make those things better, I was all for it. Plus, I had really just adopted the attitude of "giving up" meaning that I knew I couldn't do anything about it or for my son. It was all in God's hands and the hands of the doctors.<br />
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Thankfully, Claude was able to be at the hospital or with Emmitt and Eli every step of the way. It's funny how God orchestrates things. In early April, just before Emory was born, Claude found out that his contract was not going to be renewed and he was without a job. Emory was born May 6, released from the NICU June 6, hospitalized July 23, hospitalized again July 30, and had open heart surgery August 3. During all of this, God not only provided EVERYTHING we needed through family, friends, meals, etc., but He also arranged it for Claude to be available....much more so than if he had been working full time. <br />
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Emory stayed in the hospital for 8 days, which is longer than usual for babies who have just had open heart surgery. He had some fluid on his lungs and some breathing issues which had to be taken care of before they released him. When we took him home, we went home with several meds such as Lasix, Coreg, and about 3 others I can't remember the name of right now. We also had a pulsox machine that the medical supply company brought to us. Thankfully, we only used this a couple of times.<br />
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In the months following surgery, Emory was able to come off the feeding tube at the end of October. He also has dropped all of his meds with the exception of taking Prevacid on an as needed basis. If you were to see him now, you would never know that he had had surgery. He is crawling, cruising, standing up independently for about 10 seconds, babbling, etc. At our last cardiologist appointment in May, the doctor said we didn't have to come back for a year. <br />
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He just recently had ear tube surgery as a resultof fluid build up that was causing hearing loss. He wasn't having a lot of infections, just a lot of fluid. But, he handled that surgery with excellence. Our 3 year old, Elijah, has had ear tube surgery twice and Claude never let me go back with Eli. He was afraid that mommy would get too emotional. But, with Emory's ear surgery, Claude was at home with the movers overseeing the loading of the moving van (I'll save that for another post), Emory did fantastic. He squirmed a little bit when they put the mask on his face for the anesthesia, but it was almost like he knew what it was and was used to it.<br />
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At our last cardiologist visit, Emory did still have a heart murmur, a small hole in his heart, that the dr. said should close on its own. For now, we don't foresee any heart surgeries in the near future. As I said before, if you look at Emory, you would never know what he had experienced and you would never think that anything was wrong with him. However, he does still have some delays and issues with eating, speech, weight gain and motor skills - all of which is a result of the DiGeorge Syndrome. As time goes on and as he gets older, he may or may not have similar or additional issues. We just go one day at a time. We are currently trying different table foods at all of our meals and he is making some progress but still chokes a lot. He is also still on infant formula due to a severe milk protein and soy allergy.<br />
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We've just moved to Rocky Mount, NC. In fact, we've not even been here for a week. Claude has joined the church staff at Englewood Baptist Church as the Minister of Reaching where he will oversee the evangelism and sports ministries. But, I'll have to blog more at a later time to fill you all in on that. For now, we are enjoying our miracle baby who is so full of life and laugter. Emmitt and Eli are doing great and the 3 of them play great together. We are a little on the tired side from moving and unpacking boxes, but this too will pass. Until next time.....<br />
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Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com1tag:blogger.com,1999:blog-1326054039244967089.post-68275473956908934962011-02-01T00:25:00.000-05:002011-02-01T00:25:37.748-05:00Car SeatsSo, I get these emails from Toys R Us, Wal Mart, Target, Joanns, Michaels, Family Christian Stores, and the list goes on. They all come at least once a week and have their weekly ad in the email as well as possible coupons. I received one from Toys R Us advertising a trade in event that if you bring in an old item, you can get a percentage off a new item. Well, I guess I knew this day would come that we would need a new seat. I mean, after two other boys, the car seat we have is pretty gross. And, poor little Emory may be rear facing until he's 2 at the rate he is gainig weight. <br />
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All that is fine, but as I looked in the garage tonight at all our old stuff, I told Claude we needed a new seat and why and I was surprised he would be ok with it. I just hate spending the money when I know it's going to be our last child. Then again, he weighs less than 15 pounds and he won't grown into the front facing car seat and booster seat as quickly as the other two did. So, I'm on the hunt now to find the best seat at the best price.<br />
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Tomorrow I have my final post op appointment and hope to have time to look at the car seats at Toys R Us before picking up the boys from preschool. As far as that garage is concerned, we've got to have some warmer and dryer weather on a day without kids in order to clean it out. February is consignment sale month around here and I'm already making preparations. March is going to be our yard sale month.<br />
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Sorry if this post has been boring, but could you please do me a favor? If you have any words of wisdom on car seats, please let me know. Thanks!<br />
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Have a great Tuesday,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com2tag:blogger.com,1999:blog-1326054039244967089.post-80907182078983932342011-01-28T15:29:00.000-05:002011-01-28T15:29:34.543-05:00Pulmonologist VisitOn Monday, we saw the pulmonologist for the first time for Emory to have his second round of rsv vaccine. The appointment went verry well, Emory had his shot....it burned a little and he cried some, but not anything too terrible. After he calmed down, I got him dressed and we headed back home. Sometimes the worst part about those appointments is the drive down there and back =). We will go back in a month for another round of rsv vaccine (his final round for this year) and then will follow up 3 months after that. The dr. did say that he still heard Emory's heart murmur a little bit. That confused me but thankfully we have a nurse in the family that helped me to understand that better. Basically, Emory still has a small hole in his heart that is using about 5% of his energy whereas the previous one was using about 95% of his energy. Our cardiologist said that hole should close on its own and he is not currently concerned about it. Overall, everything went well.<br />
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From day to day, I really don't think much about Emory's history, his heart surgery, his time on the feeding tube, etc. My thougths are usually directed solely towards what needs to be accomplished for that day. But then when I go to these appointments, I really begin to realize the extent of what Emory has been through in just 8 months of life. I mean the questions the nurse asks when we first go back to the room, then the questions the dr. asks when he gets back there, etc. As we were weighing Emory, the nurse said "Our file on this little guy is really thick and we haven't even see you all yet". I was like "Yeah, he's had a lot take place since he's been born". It's like a reminder and a flashback so to speak. Please don't hear me being negative, it's just kind of a weird feeling. I look at him and play with him everyday and don't think twice about things. But, if he coughs the wrong way, breathes heavy, has a slight fever, etc. I'm on high alert and the "Momma Bear" thing kicks in really strong.<br />
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I'm very thankful and can only give God the credit that we have not had any illness this cold and flu season (knock on wood). I hope and pray it will stay that way for all ours sake, but especially for Emory. Speaking of, he is waking up from his nap wanting to play. Until next time......<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-89217825567017215742011-01-22T00:05:00.000-05:002011-01-22T00:05:13.053-05:00Today Is A Special DayI'd like to take a minute to preface this blog post....I began this post late in the evening of Wednesday, January 19th and here it is Friday, January 21st late in the evening again. Maybe I won't get interrupted or fall asleep sitting at the computer =). So, keep that in mind when you read the blog post from below.<br />
<br />
Today's A Special Day....when I hear that phrase, I hear one of my former pastors, Dr. Ron Stewart, saying it on the local radio station in Knoxville, TN. He would always give a reason as to why it was a special day. And, after years of recordings, he put them all in a book. For me, today (Wednesday, January 19th) is a special day for many reasons.<br />
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On this day 21 years ago, I gave birth to a very healthy baby boy at the young age of 16. Three days later, I signed adoption papers and allowed case workers to place him in the home of two wonderful Christian parents. I called him today to wish him a happy birthday and as I hung up the phone, tears came to my eyes - not tears of sadness but tears of joy. Although I had no part in raising him, I'm proud of him and all his accomplishments! He is close to graduating from college and will be attending graduate school soon after. I could not have asked for him to have had a better life and I praise God for his parents and his family!<br />
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Now, jump ahead 21 years......If I would have known all of the challenges that the last 8 months were going to include, I may not have decided to have another child. However, God knew every detail and gave us the exact amount of strength and grace when we needed it for all that Emory would face. I'm hear to tell you that that little dude has overcome so much and is doing very well.<br />
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Emory had his physical therapy appointment this morning. He continues to reach milestones and gain weight. He has gained 9 ounces in 2 weeks and has grown 1/2 an inch in 1 month. He is sitting up independently and we are working with him on learning how to crawl. He is smiling and laughing. He is doing well with his eating and has learned how to hold a small bottle by himself. He has improved to refluxing about 5% of the time rather than 95% of the time. He has energy to play like most normal babies his age. Granted, he still has some milestones to reach and is still developmentally behind a month or two, but he is doing so much better than he was. Please don't misunderstand me, I'm not saying that to be negative or to label him, I'm simply being realistic as his mom who sees these things every day. Knowing what his diagnosis is, all of these things such as delays, weight issues, digestion issues, etc. are normal.<br />
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I've hesitated in writing my next thoughts because I don't want to sound insensitive and don't want to make things about me, but I really just don't know how to better say it. On December 31st, one of Emmitt's friends, Elizabeth, lost her battle with cancer. She had been diagnosed in March 2010 and in December 2010 had been told she was in remission. Upon returning home from a vacation taken during the week between Christmas and New Years, God called Elizabeth home. I mention that to you because on that evening, New Years Eve, Claude and I had no plans to go out. We didn't have any guests over. It was just another night where I cooked, cleaned the kitchen, bathed the boys, put them to bed, did some laundry, etc. It was just another nightly routine and I was not happy about it. All I could do was think about what else we could be doing, why we didn't have a date night, why I had to cook, why I had to bathe my kids, why I had to clean the kitchen yet again, etc. Then, after watching the ball drop in New York and ringing in the new year, I logged onto facebook to post my status as "Happy New Year". And, that's when we saw the news of Elizabeth. It was at that very moment that God quickly convicted me of my thoughts and filled me with the spirit of gratefulness. <br />
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So, today is a special day because of my family.....Claude, Emmitt, Eli, and Emory. I didn't think it would take me 21 years to be married and have a family, but as I said before, God knows every detail. Those tears I cried earlier were simply because I am so amazed at what He has blessed me with. The mere fact that He chose me to be "Mom" of the "3 Eboys" is more than I would have ever imagined. I mess up every day (sometimes every hour), but ALL of my boys are truly blessings and God's gift to me!<br />
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So, I leave you with this question.....Is today a special day for you? If so, why?<br />
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Much Love,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-82035086870787008182011-01-06T21:25:00.000-05:002011-01-06T21:25:00.835-05:00Picture Christmas CardsDear Family and Friends:<br />
<br />
If you receive a Christmas picture card from us late, I do apologize. We participated in the Living Christmas Tree this year which consumed a lot of time. Following that, I had surgery the week before Christmas and that took some time as well. So, the cards had been put on the back burner till now. Hope you enjoy them. All of our pictures were taken by Hope Cox with Daisy May Photography. She does work in the East TN/Kentucky area and does a fabulous job! Visit her website at <a href="http://www.daisymayphotography.net/">http://www.daisymayphotography.net/</a>. She does a fabulous job and we have always been pleased with her work! Until next time......<br />
<br />
Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com3tag:blogger.com,1999:blog-1326054039244967089.post-78774540205925869482011-01-02T02:41:00.000-05:002011-01-02T02:41:25.870-05:00Dear Friends:<br />
<br />
I write this blog post tonight with a heavy heart. Our dear friends, Peter and Jessica Cooke, lost their 5 year old daughter last night....Jesus called her Home. She was diagnosed in March 2010 with cancer but had completed all of her radiation and chemo and had received clear reports on all of her recent tests. With that in mind, this was a terrible shock to her parents, their families, their church family, and their friends. Emmitt and Elizabeth were good friends and always had a blast together! Please stop right now and take a few minutes to pray for Peter and Elizabeth Cooke as well as all of their family members....I know they would appreciate it.<br />
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In Him,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-32303928348934923102010-12-29T01:41:00.000-05:002010-12-29T01:41:23.694-05:00Williams Family Christmas Newsletter - "Part One" (quite lengthy)Dear Friends:<br />
<br />
<div> </div>As I sit here at the end of Christmas Day 2010, I am overwhelmed at how blessed our family is! I realize that I haven't blogged in awhile, that many of you didn't know we had a blog, and many of you may not have even realized all that has taken place in our family this year. It has definitely been one crazy busy year. I mentioned to one of my Mom to Mom leaders about not having time to blog and her response was, "Well when would you have time to?" All I could do is agree and laugh. <br />
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<div> </div>I've had Christmas picture cards printed and a little bit of time to do them, but knew that the newsletter had to be written first....and I honestly have not been able to sit down and do it. Every time I thought about the last 12 months in our lives, more specifically the last 7 months, I became so overwhelmed with emotions of the ups and downs. I really have just taken each day as it comes, faced it head on, and kept going. If I stop and think too much about everything, I either cry from the stress or cry tears of joy. So, I guess I'll start with our oldest.<br />
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<div> </div>Emmitt, age 4, is one pretty amazing kid! He goes to preschool at our church 4 days a week and is just learning so much! He is quite the social bug at school and is a permanent sponge. He is our child who hears, sees, and remembers everything. When he learns something new, his face just lights up and his eyes almost pop out of his head. He will turn 5 in February and will go to kindergarten next year, which is so hard to believe! He loves going to church and just when you think he isn't listening to the Bible story, will come home later and tell you EVERY detail. He has had a great time this year with Christmas and is enamored with baby Jesus. He has really taken on the role of "big brother" more so lately than ever. He is very protective of his two brothers, wants to teach them how to do things, and takes charge when necessary. He also likes to suggest "plans" to me and then follows it with the phrase "How 'bout that mommy? Is that a good idea?" Some days I laugh and some days it becomes a frustration and a battle of the wills. Santa brought a Wii to our family this Christmas and he is quite the "athlete" in bowling, golf, baseball, and boxing. He has so much energy!<br />
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<div> </div>Elijah, age 2, marches to his own beat. I jokingly say that there is a planet in the solar system with his name on it because he orbits his own little way. He goes to preschool at our church 2 days a week and loves going to preschool and church as well. He does and says everything his brother does but also has his own uniqueness to his personality. Eli is my "momma's boy" more so than Emmitt, but they both always make sure that mommy is taken care of. Eli is our child that any time he hears music of any sort, he starts moving (just like his daddy). Then again, he moves a lot when there's not music =). He is very soft spoken but also very animated! Elijah is my child that tells me all day long, "I uv you mommy". All in all, Emmitt and Eli are both very active and wonderful boys!<br />
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<div> </div>Now I don't think I can type such a short paragraph about Emory. Emory, age 7 months, was born 6 weeks early on May 6, 2010 weighing in at 7 pounds and 5 ounces. Feel free to look at previous blogs to catch up on anything I miss. Since both Emmitt and Eli were born 4 weeks early, I knew that Emory would be early to. However, I was a little surprised at the time of his arrival as well as in shock at his diagnosis to follow. When Emory was less than 24 hours old, we were told that he had Tetralogy of Fallot (a tet baby) and that he would need open heart surgery by the time he was 9 months old. Within a week of that diagnosis, we were told that he had DiGeorge Syndrome. Not knowing much about that at the time and just wanting to get him home, I didn't think a lot about it. But, thankfully Emory was born early and God placed in that NICU a team of very intelligent and very caring neonatologists. You see, they did bloodwork on all the babies often and when Emory's calcium level came back so low, one of the doctors ran what they call a FISH test which breaks down the chromosomes of the blood. If a child has 2 or more anomalies, they automatically do this test. This test showed absence of part of the 22nd chromosome, which is DiGeorge Syndrome. It falls under the umbrella of VCFS and has many different levels of severity to it. If you would like to know more about it, you can go to <a href="http://www.22q.org/">http://www.22q.org/</a> or <a href="http://www.vcfs.org/">http://www.vcfs.org/</a>.<br />
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Emory was in the NICU for a month and came home on June 6th. Once home, we were instructed to follow up with a GI specialist, an endocrinologist, his pediatrician, his cardiologist, an immunologist, and when the time came, a craniofacial doctor (when he gets his first tooth). Just before he left the hospital, they removed his NG tube (feeding tube) and he was eating good on his own. Well, within a week of us being home, he began refluxing severely. We visited a GI specialist and he wasn't much help. Between June 6 and July 22, we were back and forth to doctors, had an upper GI, the reflux was getting worse, Emory was not gaining any weight, etc. We had gone to TN to see my parents on July 16 and when Emory continued to get worse we were able to get an appointment with another GI specialist (our second opinion) on Thursday morning July 22nd. Thankfully, he admitted Emory into the hospital for observation. They concluded that he had severe reflux, needed a different formula, and sent him home on July 26th on the feeding tube. That helped some, but not completely. <br />
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Later that week on July 29th, we had our usual appointment with the cariologist (we were seeing him every 2 weeks). After hearing us voice our concern, doing an echocardiogram, and examining Emory, he sent us straight to the hospital to prepare for open heart surgery. Needless to say, we weren't expecting to hear that on that day. After arriving at the hospital, we were kind of in a holding pattern waiting to get a spot on the surgeon's schedule. On August 3rd, Emory had his open heart surgery just before he turned 3 months old. Although that was an exhausting time for us, Emory was such a trooper and I'm so glad he had that done at such a young age. During the surgery they fixed the ASD and VSD and the surgeon said that the hole in the VSD was "huge". <br />
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Following that visit to the hospital, we came home on the feeding tube but within 6 weeks were showing some improvement with bottle feeds. From August until October, the doctor appointments have been many, we've had one other hospital stay, several medicines to be given daily, etc. But, on October 29th, we saw the cardiologist and he told us that we didn't have to come back for 6 months! That was such good news to hear!<br />
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For now, Emory is off all medications. He sees a physical therapist every two weeks and is doing well with that. Developmentally and physically, he is behind about 2 months. However, he is eating great, keeping his food down, holding his bottle, grabbing his feet, etc. Our two goals right now are to get him to gain weight and to get him to sit on his own. We continually follow up with all of his various doctors and they do bloodwork often. His latest bloodwork came back great! To look at Emory, you would never know anything was wrong with him or even suspect what he has already experienced in such a short time. We are often asked what his prognosis is for the future and we really don't know. The immunologist told us that she has never seen any case of "22q" the same and that all children are different. So, the months and years will be able to tell. Thankfully, the more we learn about his diagnosis, the more we can understand the "root of the problem" when we notice any abnormality or delay in Emory. One thing I have learned is that if we have to make a run to the emergency room, I should just take an overnight bag and prepare to stay.<br />
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Things I am thankful for......<br />
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<ul><li>If Emory had not been born so early, we would not have received his diagnosis of the DiGeorge Syndrome so early; therefore, not knowing "the root of the problem".</li>
<li>Emory was taken care of by some of the most qualified neonatologists in this area as well as some of the most caring nurses in the NICU.</li>
<li>God placed us in an area where the children's hospital is in the top 3 in the nation regarding cardiac care.</li>
<li>The surgeon that performed Emory's open heart surgery is the chief of surgery at that hospital and took great care of us on that long day. On one of our return hospital stays for something else, he saw me in the hallway and remembered us....quite impressive!</li>
<li>The Emory Children's Clinic (our "22q" doctors) is one of only 5 in the nation that deals specifically with DiGeorge Syndrome and God allowed us to live close enough to it for our appointments.</li>
<li>Our church family, Pastor Al, Dr. Steve Odeh, and our Sunday school class....we could not have gotten through all of this without the help of everyone there (you know who you are)</li>
<li>Prayers of pastors, churches, friends, etc. all around the world....literally!</li>
<li>The support of our family....all of them, but especially my parents.....my mom has come in and taken over care of Emmitt and Eli, house cleaning, laundry, cooking, etc. several times and we couldn't have done it without the help of her and my dad </li>
</ul>Emory is taking his bottles well<br />
Emory is holding his bottle on his own most of the time<br />
Emory is grabbing at toys<br />
Emory is eating jar baby food<br />
Emory smiles at us<br />
Emory knows us and responds to us<br />
Emmitt and Eli have adapted so well to everything through all of this<br />
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Our prayer now, and you can join with us, is for protection against illness for Emory, for Emory to gain weight, and for him to reach the growth milestones in a timely manner.<br />
<br />
Obviously, I wrote this letter/blog post at two different times. And, at this point in our Christmas newsletter, I would update you on Claude and I and what we are into these days. However, you've read enough for now and I've taken up enough of your time, so that will come later in "Part Two". Claude wants to submit a blog as well, so we'll let that be "Part Three" so to speak. We would love to hear from you throughout the year. Feel free to contact us through email or facebook. Should you want our home address or phone number, you can request it then. I realize that this is getting out after Christmas - I had surgery on the 17th of December and everything has been delayed this Christmas season.....all the baking, the Christmas cards, some of the activities, etc. I guess it's better late than never.<br />
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We are thankful that things have slowed down just a bit regarding all of our doctor appointments. We are very thankful that God has taken us on this journey together as a married couple, as parents, and as a family. We may not understand it all, but we are thankful. God has truly blessed us beyond what we deserve or would have even thought of. We pray God's blessings on you and your family in the coming year.<br />
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In Him,<br />
<br />
Claude, Twila, and the "3E boys"<br />
<a href="mailto:cdubcu@gmail.com">cdubcu@gmail.com</a><br />
<a href="mailto:twirla777@gmail.com">twirla777@gmail.com</a><br />
<a href="http://www.claudewilliams.com/">http://www.claudewilliams.com/</a>Claude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-7062357176529750532010-12-23T01:06:00.000-05:002010-12-23T01:06:25.796-05:00UpdateBe on the lookout for our Christmas newsletter coming soon!Claude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-43167626143896140632010-10-14T11:32:00.000-04:002010-10-14T11:32:15.810-04:00Emory is HomeHey Everyone,<br />
<br />
Just in case you don't know, Emory came home from the hospital on Wednesday afternoon. He is doing a little better, but we are still working on some feeding, formula, and digestive issues. I will post more later on. Thanks for your prayers.<br />
<br />
In Him,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-64116289205477391862010-10-12T10:32:00.000-04:002010-10-12T10:32:48.086-04:00Emory in the HospitalHey Everyone,<br />
<br />
I'm sorry it's been so long since my last blog. To say things have been busy is an understatement. Nothing extra or out of the ordinary, just life.<br />
<br />
Emory and I went to the emergency room at Children's Hospital on Sunday afternoon due to a virus and diarrhea that he had been dealing with for almost 12 days. They admitted him and he is still there today. I came home last night in order to take care of some things with all of the family schedules and to get some rest. Hopefully, when I get there today, he will have enough progress to come home today. I will post again soon to update everyone.<br />
<br />
Thanks for your prayers,<br />
<br />
Twila WilliamsClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-83723998137862766712010-08-20T22:36:00.000-04:002010-08-20T22:36:18.119-04:00UpdateDear Friends:<br />
<br />
It has been a busy week but thankfully, our niece Sarah was here to help. The week started off with preschool orientation on Monday and the first day of school on Tuesday. Both boys have great teachers and enjoy their classes immensely! <br />
<br />
We only had one dr. appointment this week and that was the post op appointment with the surgeon for Emory. His chest xray looked good. It still showed a little bit of fluid which they said should go away in time. The nurses and dr. were both pleased with how well the incisions have healed and said he looked really good. He had not lost or gained any weight, which was a little disappointing to us that he had not gained weight. The surgeon told us not to expect much weight gain until a month after surgery. When Emory came home from the hospital, he was on a regimen of taking 9 medicines. After our GI follow up appointment, we eliminated one of those medicines. After the follow up appointment with the surgeon, he eliminated 2 of those medicines. So, now Emory takes 4 medicines on a regular basis throughout the day in addition to 2 medicines that are to be given on an "as needed" basis. <br />
<br />
Overall, Emory is doing well. He is still taking all of his feeds through the ng tube. We turn off the feeding for an hour at a time twice a day. He also still throws up once or twice a day. Although it isn't nearly as bad as it was, we are still trying to work towards him eating from the bottle and not throwing up. The surgeon suggested that in order for him to gain weight for us to increase his feeds from 30 ml an hour to 32 ml an hour. But, when we did that, he seemed to throw up more. So, we are back down to 30 ml an hour. People keep telling me how common all of this is with cardiac and digeorge babies, but it's still challenging and hard to get used to. But, that is our biggest goal for him for right now....to eat from the bottle and keep it down.<br />
<br />
Most babies have their second round of shots at 4 months of age; however, Emory will wait and have his at 5 months of age due to us needing to wait till 6-8 weeks after surgery. He also will start his rounds of rsv vaccinations in October and they will come to our house and administer those so that we don't sit around all the germs in the pediatricians office. This is something that the pediatrician set up for us....thanks Dr. Barnwell! Our next appointment is next week when we follow up with the cardiologist on Friday.<br />
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Emmitt and Eli are doing well. They are soooo full of energy these days. We keep trying to stop them from running up and down the halls and from being so loud.....they are 200% boy! Emmitt is a big helper and Eli just repeats everything Emmitt does and says. Everything is a competition with them. Our niece Sarah came in last Saturday and her mom, Aunt Dawn, came in Wednesday night to get her. They both left this morning to go back to FL. But, the boys LOVED having them both here. Today was our first day in a very long time when it has been just us here at the house without any visitors or family members. We have just stayed in and done stuff around the house, played, watched some tv, etc. It's time for us to get into a more structured routine and hopefully we won't have too much drama with Emory for a little while. <br />
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That's the update for the kids.....everything is about the same for Claude and I. I kind of stay in a state of being tired, but my mom so kindly informed me years ago that it would be that way for at least the next 18 years. Claude is coaching football and subbing at Landmark. Although it's not ideal and doesn't make sense, at least it is bringing in some income. Please continue to pray for him to find full time permanent employment. We see that God has us here for a reason and are not sure what exactly that is. But, we also need that secured employment.<br />
<br />
Hope everyone has a good weekend.......be blessed!<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com1tag:blogger.com,1999:blog-1326054039244967089.post-19841482410964774542010-08-15T23:14:00.000-04:002010-08-15T23:14:29.741-04:00Back to SchoolWell, it's that time of year again! Time for the schedules to get tighter, bed times to be earlier, lunches to be packed, clothes to be laid out the night before, etc. I can't believe that "school" (preschool for my boys) is already back in session! You see, I was supposed to have Emory after school was out last year and instead had him 3 weeks before school let out. Can I just tell you what a blur this summer has been? Can I just tell you what a blur the last three weeks have been? Oh my word! I'm running on pure adrenalin and honestly signed on to post a short blog so that everyone could have an update. I start "hitting my wall" around dinner time which is not good when you have hungry mouths to feed and a kitchen to clean up afterwards. So, tonight's blog will be short and I'll type more at length tomorrow or another day.<br />
<br />
Emory is healing well from his surgery. Tuesday will be two weeks post surgery and Wednesday we will follow up with the surgeon at his clinic. His incision looks great, he has been fever free, he is only throwing up about once a day, and he is acting more like himself a little bit every day in the fact that he wants all the attention. He is wearing socks on his hands so that he doesn't pull out his ng tube. We changed back to his original formula and will see how he tolerates that. We did go to Sunday school and church today, which was a blessed time. Emory stayed with us in his stroller and his "formula backpack" hanging off of the handle. As long as he has the tube in, I've got to get used to going places with him and the tube. But, until he is 6-8 weeks post-op and possibly even tube free, I won't put him in the nursery, which is so unlike me. But, as I'm learning and will blog about later, every child and the season of life that he or she comes with, is different! That is the short version of how Emory is doing. Please keep him in your prayers specifically for him to tolerate bottle feedings so that we can get rid of the ng tube. And, please keep us in your prayers specifically for Claude to find employment. <br />
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Hope you all have a wonderful Monday!<br />
<br />
Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-29195622959057201612010-08-12T23:37:00.000-04:002010-08-12T23:37:35.288-04:00Pure ExhaustionDear Family and Friends:<br />
<br />
I have not blogged the last two nights simply due to pure exhaustion! Tuesday marked one week after surgery and they wanted to send us home that day but Emory started refluxing, throwing up, wretching, etc. in the hospital. When the surgeon did rounds, he said for us to stay one more day and let Emory be observed. He said that from a cardiac stadpoint, Emory was doing great and healing good. But, depending on how many times Emory threw up in 24 hours would determine if we needed to change from the NG Tube the the G Tube and to have the "Fundo" surgery. So, Claude sent me home to get some rest and stayed up there with Emory. When the surgeon did rounds on Wednesday, he did not think Emory's throwing up episodes were significant enough to warrant another surgery so soon. He discharged us to go home.<br />
<br />
We got home Wednesday afternoon and the only thing Emory still needs 24/7 is his NG tube which feeds him his formula. We do have several oxygen tanks and a pulsox machine in case we need it. It took us a while to get all of the equipment and "stuff" from the hospital settled, but we got it all under control, ate a delicious home cooked meal that Gremmy cooked for us, got the older two boys bathed and in their rooms with a movie, and I was off to Wal Mart for a few things. Mind you, I have not been to Wal Mart in weeks. For those of you who know me well, you know that is rare! While in Wal Mart, Claude called and said that Emory had pulled out his tube. So, I quickly finished up the shopping, got home, and we started the process of reinserting the tube. <br />
<br />
Claude tried several times and we almost went back to the NICU where Emory stayed just after birth, but Claude finally got it right. About an hour later though, Emory threw up a great deal. At this point, it was about 11:30 and I was concerned that maybe we didn't get the tube in the correct spot. So, off we go to the ER to have it checked......we went to the hospital close to our house rather than the children's hospital downtown. Once we got there, we were taken to the back immediately because of Emory's condition. We will always be taken to the back quickly because of his heart condition and his DiGeorge. But, once we got there, the pediatric ER was closed and that is when they mix in all the children with adults. They said it was a 4 hour wait and for a patient with DiGeorge to sit in an ER waiting room is not wise. So, we walked up to the NICU and the nurses there checked it. Plus, it was great to see some of the nurses that took care of him. They just went on and on about how big he had gotten. I guess for me to be with him 24/7 and to see all of his problems, it's hard to see his growth. Then we got home around 1:00, got Emory settled and closed my eyes at 3:00, and then was up and down till 9:00. Hopefully, tonight will be better.<br />
<br />
During one of those up and down times, Emory pulled his NG Tube out AGAIN! This little guy is fiesty! Claude got the tube put back in and we started our process to leave for a follow up with the GI doctor. Emmitt and Eli had fun at Mrs. Misty's house, the three of us went the dr., and Gremmy left to pick up Papa in TN only to continue on to VA for Papa to preach at a meeting. Our visit with the GI doctor was successful for now. He changed one of Emory's medicines and gave us some instructions on feedings and said to follow up in 3 weeks. Basically, right now Emory is being fed through the NG Tube 24/7. If he continues to pull his tube out or if his reflux and throwing up gets excessive, then we will further consider the insertion of the G Tube and the "Fundo" surgery. Until then, we are just settling in here at home where it is cool. We can certainly go out with his bag of formula, but it hasn't yet become "second nature". Tonight when I finised bathing him and putting his pajamas on him, I put socks on his hands so that maybe he wouldn't pull the tube out. <br />
<br />
In essence, I've gone from following a strict feeding schedule to a strict medicine schedule. Emory gets 8 medicines a day, round the clock. Thankfully though, he doesn't have to have any doses given between the hours of midnight till 6:00 a.m.<br />
<br />
While we were at the doctors office today, we saw a few children who were much worse off than Emory. And, although our stress level is high and we are exhausted, I was so thankful then that Emory had the issues that he has. After seeing those other children, it made our life look like a breeze!<br />
<br />
Well, the house is quiet....all the boys are sleeping.....and this momma is gonna call it a day! The older boys start preschool next week and I don't think I've looked more forward to something in a long time. I'm ready to get into somewhat of a routine and that only seems to happen when school is in session. Have a great night everyone! Until next time.......<br />
<br />
Take Care,<br />
<br />
Twila Claude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com1tag:blogger.com,1999:blog-1326054039244967089.post-49260446562429113452010-08-10T13:55:00.000-04:002010-08-10T13:55:07.894-04:00Feeding IssuesDear Friends:<br />
<br />
Emory will not be going home today due to some feeding issues. I will give more of an update later.<br />
<br />
Have a good day,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com1tag:blogger.com,1999:blog-1326054039244967089.post-6592365205577954222010-08-09T22:21:00.000-04:002010-08-09T22:21:35.359-04:00The Latest on EmoryDear Friends:<br />
<br />
Since my last blog, there has been a lot of little things go on. On Saturday, one of the nurses was a little concerned about Emory's temperature. She waited a little while to give him his tylenol in order to see if he temperature would rise and sure enough it did. It has always been and still is a low grade fever, in fact one that they aren't worried about. However, to be on the safe side, they sent blood work off for cultures and started antibiotics. They usually come around 4:00 a.m. to do bloodwork and that was taken Sunday morning. So far, the cultures have not grown anything, so they have stopped the antibiotics because of it giving him some nasty diapers.<br />
<br />
He still has some fluid on his lungs that they are watching. They are also trying to wean him off of the oxygen because they want him to go home tomorrow. As one nurse put it, from a surgical standpoint, he is doing fine. Soft Touch Home Health will be bringing us a portable oxygen tank, a large free standing oxygen tank, and a pulsox machine. Hopefully we won't need to use it, but it will be good to have on hand. Our biggest concern is the fluid on his lungs and that we may end up back in the hospital sooner than we want to. He is receiving two different medications through an inhaler as well as respiratory pyhsical therapy several times a day. Those medicines combined with the pyhsical therapy will help loosen up the fluid in his lungs.<br />
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They also took his pacing wires out today. They were leaving those in so that if they needed to revive him for any reason, they could send an electrical shock to his heart.....at least, that's my elementary understanding of it. <br />
<br />
He also had a consult today by the speech pathologist. At this point, I had not gotten here yet. The speech pathologist fed him with a bottle as part of her consult. Keep in mind that since surgery, Emory has been fed through the NG tube and has not had one reflux or vomitting episode. However, she fed him around 12:45 and by 3:30, he was refluxing and wretching. We called the nurse practitioner and nurse in here and they wanted to say that it couldn't be because of the bottle since there was such a gap in time in between. This is the point where this mama was not a happy camper. I proceeded to let them know that although they had the medical knowledge, I had the mommy knowledge. Of course, I didn't use those exact words, but when you take care of your own child 24/7 and know how he does things and a dr. tries to tell you that "it's not because of the bottle".....I don't think so! So, after 2 reflux episodes and a lot of wretching, Emory finally calmed down and has been fine ever since. We will follow up with his GI dr. on Thursday and put together a game plan. Emory sucks and swallows just fine.....but something happens between the sucking part of the feeding and where it goes in his stomach. That is what we need to figure out. Until then, we are on the feeding tube. My prayer is that we can get all of the feeding issues settled so we can try and catch up to his age. <br />
<br />
I think that is about it concerning the medical updates on Emory. The rest of the family is doing fine. After staying in the hospital the first two nights, Claude stayed last night and I'm back up here tonight. I was able to get some rest as well as do some things around the house. My mom has been keeping the older boys during the day and has been a HUGE help. We could not have gotten through this without her help. I know the boys are wearing her out so I'm glad she has a place to retreat to (somewhat) at night and get some rest. She'll probably need to sleep for a week after she leaves here!<br />
<br />
Tomorrow two ladies from church are going to be cleaning my house. Thank you Nicole and Kim.....I appreciate your servant's heart more than you will ever know! And, for everyone else who has helped us in ANY way, to say thank you doesn't seem like it's enough. But, please know that we do appreciate every blessing and gift whether it be through meals, gifts, babysitting, monetary gifts, cards in the mail, etc. Well, I must go for now....the nurse is going to show me how to give Emory a bath "after surgery". Until next time.....<br />
<br />
Take Care,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-79446248920557605932010-08-07T23:16:00.000-04:002010-08-07T23:16:48.813-04:00Out of CICUDear Friends:<br />
<br />
I meant to blog last night but was just really tired and couldn't think straight. However, I was so tired that I couldn't get to sleep. Don't you just hate nights like those? I usually don't get around to blogging until very late at night, so if you read something that doesn't make sense, just chalk it up to being tired!<br />
<br />
Yesterday afternoon when my mom and I arrived at the hospital, Emory had moved out of CICU into a room in the Cardiac Stepdown Unit. He has most of his tubes removed. He still is being fed through the ng tube, which we will go home with and will probably be on for quite some time. Praise God that he has not refluxed any since surgery. Before surgery, he was refluxing even with the use of the ng tube. They tell us that his feeding and digestion will improve now that his heart is fixed, but for a DiGeorge patient, that challenge may take a little longer to overcome. Also, there may be some other issues going on that we are not aware of yet. So our plan for now is to go home on the ng tube and slowly start bottle feeds throughout the day and see how Emory tolerates that.<br />
<br />
Emory is also receiving some oxygen. He has fluid on his lungs and they are taking xrays daily to see what that fluid does. When referring to his heart and the surgery, he is doing great. But in order to go home, we have to also look at the oxygen levels, fluid in the lungs, eating issues, etc. Thankfully so far we have not had any fever, infection, or bleeding. Nothing is set in stone, but they are working torwards us going home Monday or Tuesday. We'll attend a discharge class on Monday just because that is when it's offered. However, I don't care when it is, I'll be nervous about taking him home anyway.<br />
<br />
Before all this began, Emory was a tummy sleeper. Now that he has to stay on his back for awhile, we are trying different things like laying him on his side, getting him a mobile, etc. They brought a mobile to his room that plays music, has shapes that go round and round, and that shines lights up on the ceiling. He really likes the lights! So, now I need to find some type of configuration to get some lights on the ceiling.<br />
<br />
We had some dear friends come by to see us today. Our friends Scott and Melanie and their three boys drove in from TN to see Emory and to take us to eat. It was great to see them and a real treat to have dinner and adult conversation. It was a nice change of scenery. So, a big thank you to them! My mom is coming down to the hospital to sit with Emory tomorrow morning so that I can go to church. Bless her heart, I know she is very tired after taking care of Emmitt and Eli so much. But, we couldn't have gone through this journey without the help of her, my dad, and so many others in so many ways. You know who you are.....if I started to mention them all, we'd be here all night. We still have several challenges ahead of us and different things we'll have to face, but we know that God will give us the strength we need at the exact time we need it. And, we are thankful for all of the family and friends He has blessed us with that have helped carry us through.<br />
<br />
Lastly, when you pray for Emory and for us, please pray for healing for my foot and my knee. It's a crazy story, but I started walking towards the light switch today and slipped on the wet floor. I have sprained my right foot and left knee. More than anything, it's an inconvenience. The nurses made me go get an xray and they tried to send me out on crutches, but could you imagine what Emmitt and Eli would do with mommy's crutches? I don't think so! Anyway, please pray for the pain to go away and for healing. I honestly don't have time to deal with something like this when I need to focus on my "4 boys".<br />
<br />
Well, it's late once again and I must go get some rest before they start the regiment of coming in all through the night for vitals, xrays, etc. Until next time......<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com2tag:blogger.com,1999:blog-1326054039244967089.post-26646223211514722552010-08-05T23:22:00.000-04:002010-08-05T23:22:43.216-04:00Busy DayGood Evening Friends: <br />
<br />
It's late in the day and I'm worn out. Do you ever have those days when you think back over the day and feel like you haven't really accomplished a lot but yet you are exhausted? I've been feeling that way a lot lately. We left a little late today for the hospital. We needed to do some things here at home this morning and set out to do a lot, yet felt like we didn't do very much.<br />
<br />
When we arrived at the hospital, Emory had his two chest tubes removed, the tube in his neck removed, and the catheter (spelling?) removed. They had increased his formula feedings through the tube. His biggest hurdle right now is that he still has a lot of fluid on his lungs. They told us that it was time for him to go to the step down unit into a room, which is good in the fact that we can stay with him at night but it also makes me very nervous because that means we are closer to going home. I asked them why they were so quick to send him to the step down unit and they said that he wasn't a very critical case anymore.<br />
<br />
Emory is certainly doing better on another level....when we got there the nurse informed us that he did not like for them to leave his bedside. I just laughed because he is one baby who likes to be held all the time and who loves one on one attention! Emmitt and Eli loved their swing, bouncy seat, jumperoo, etc. and that kept them occupied for fairly large amounts of time for me to get various things done. But not my Emory.....he wants Mommy, Daddy, Gremmy, Aunt Dawn, or anyone else who is willing to hold him all day long! Emory is becoming very agitated because he sees us but we can't pick him up to comfort him. He still has too many tubes and such that are attached to him and we would run the risk of something coming loose if we were to hold him. He looks up to us with such pitiful eyes!<br />
<br />
It was harder to leave him today probably due to the fact that in the 4 hours I was there, I didn't really get to spend much time with him. When a patient comes to the CICU from surgery, all the parents and anyone who is not medical personnel have to leave. There were several times we had to do that today. So, all in all it wasn't a normal day. Emory has some obstacles to overcome, but the nurses assure me that it is very common for post op patients to experience these things.<br />
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Thank you so much for your prayers. Please keep praying for all of us.....we see God at work in so many ways and we've had many opportunities to minister to others there in the hospital. However, at the end of the day, we are exhausted. Therefore, the prayers are appreciated more than you will ever know. Will post updates tomorrow......<br />
<br />
Until Then,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com4tag:blogger.com,1999:blog-1326054039244967089.post-73824913674574609222010-08-04T14:54:00.000-04:002010-08-04T14:54:33.627-04:00A Day in the Life....Dear Friends: <br />
<br />
We are at the CICU today at Emory's bedside. He is improving but it is a slow process. He is off the ventilator and is breathing on his own but is also having some respiratory issues as well as a lot of fluide that he needs to urinate out. His breaths per minute are ranging from 30-50 whereas before they were between 60-80. This is a big difference and improvement in and of itself. They are weaning him off of various medicines as they see fit but each tube and each medicine do something different so they have to be very cautious. Please continue to pray for his respiratory status as well as the fluid he had on his lungs.<br />
<br />
The rest of the family is doing well. Emmitt and Eli had a play date this morning (thanks to Ginger) and then Gremmy was going to pick them up and take them back to the house for "Quiet Time". She needed to go to the grocery store and didn't want to take them with her......can't imagine why?! =) I figured that if she were going to the store for us, the least I could do was get the boys occupied for a couple of hours!<br />
<br />
One thing that they do here in the CICU is make a necklace for the patients. The necklaces are used to journal the track of treatment that Emory receives. So far, he has 23 beads. I'll get a pic of it and post it soon. You can learn more about it at <a href="http://www.beadsofcourage.org/">http://www.beadsofcourage.org/</a>. Also, I realize not all of you are on facebook, but for now, all of our pictures are on there. If you decide you want to add us as a friend my fb name is Twila Herrod Williams and Claude's is Claude L. Williams (it has a picture of rhinos from his trip to Kenya). <br />
<br />
We are in the process of getting the blog updated with pics, links, decoration, etc. Someone whom we have never met before but has learned about us through another blog is going to help us with this one. Thank you in advance to Jennifer Parris. We are finding out just how much it is a "small world" because of friends who know other friends, who follow other blogs, etc. I'll save that story for another day, but it's very encouraging to know that people whom we've never met and who live in other states are praying for us.<br />
<br />
I must go for now but will update at the end of the day. We're having some "issues" today with the fluid retention but that is something that the nurses and the PA say is all copletely normal. Thanks for the continued prayers.<br />
<br />
Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com3tag:blogger.com,1999:blog-1326054039244967089.post-8825884858695009162010-08-03T22:21:00.000-04:002010-08-03T22:21:14.192-04:00Last Update for Day of SurgeryGood Evening Everyone,<br />
<br />
We left the hospital tonight around 6:15 before they did shift change. We contemplated staying in one of the sleep rooms, but there is honestly not a thing we can do for Emory between the hours of 8:00 p.m. and 10:30 a.m. Plus, we are beyond the point of exhaustion. While Emory was in surgery, we had to get all of our belongings out of the hospital room, take them to the car, and whatever else we needed throughout the day, we carried with us. For now, while he is in CICU, we will come home at night. Their shift changes (when no one is allowed back there) are from 6:30 to 8:00 p.m. and 7:00 to 10:30 a.m. So, we will just go up in the mornings and leave around 6:30. Now, when he gets to the cardiac step down unit, he will be in a room like he was before and will stay there for a couple of nights. I'll plan on staying with him in the room then. Should any of you plan on visiting and you call our cell phones and don't get an answer, just text us. We have to keep our phones on silent or vibrate and can't talk on them while we are in CICU. There can be up to 2 people at his bedside in the CICU, meaning that one parent and one visitor can go back to see him.<br />
<br />
When we left Emory, the nurses said that he was doing just exactly what he should be doing for this point of post op. They are already weaning him off of the ventilator, they have stopped giving him the blood pressure medicine, and they are trying to wean him off of some other meds as well. After staying in the NICU for his first four weeks of life, we know that during that time, there are many ups and downs. But, this is the first (and most important) of many things to take care of. The doctors seem to think that now that his heart is repaired that Emory will eat better, his reflux will get better, he won't get so tired so soon, etc. If for some reason his vomitting episodes do not improve, then we will look at either a G tube (being fed through the abdomen), or two other gastrointestinal possibilities. So, the first goal is to recover beautifully from surgery, to conquer eating, to decrease reflux to a minimum, and to gain weight. After that, we will take each milestone one day at a time.<br />
<br />
Thank you doesn't even begin to describe how grateful we are for people that we don't even know in several different states who are praying for us. Please keep praying for there to be no bleeding and for no infection.<br />
<br />
Good Night,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com2tag:blogger.com,1999:blog-1326054039244967089.post-46275244727795993782010-08-03T14:55:00.000-04:002010-08-03T14:55:46.864-04:00Out of SurgeryHey Everyone,<br />
<br />
Emory's surgery finished up around 11:30 and we were able to see him about an hour later. While we were waiting to see him, we met with the surgeon and he informed us of what all he did during the procedure. He repaired the two holes in Emory's heart and did not see anything that needed to be done to the pulmonary valve and the right aortic arch. He did say that the hole in the VSD was "huge" and that he repaired both holes. After Emory came off the heart lung bypass machine, they tested his heart to see if everything was working right and to see if there was any leakage. There was no leakage and everything looked good, so they sewed him back up.<br />
<br />
We had heard many stories about what he would look like in the CICU. And, we had a tour of the CICU the other day. With those two things combined, walking in to see him was not as hard as I thought it would be. He is a little swollen and has about 30 tubes in, out, and around him, but he looks like himself and looks good. Right now the key is to not have any bleeding and to not get any infections.<br />
<br />
Thanks to those who came to the hospital to see us today. It helped pass the time. We are doing well but are very exhausted right now. With us being in the CICU, it's different in the aspect that we aren't in a room and don't have a place for a nap. I guess we are running on fumes. They are doing some remodeling on the main waiting room that is nearest the CICU, so we are just moving around the hospital when we're not in the CICU. If you come to visit, call one of our cell pohnes so that we can com let you know exactly where we are.<br />
<br />
One thing that is different in being in the CICU and the NICU is that as long as it's only two people at Emory's bedside, we are fine. That can include family members, siblings, friends, etc. Although the heart surgery is done, we still have a long road ahead of us and would appreciate your prayers.<br />
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Take Care,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com4tag:blogger.com,1999:blog-1326054039244967089.post-49699992170545137522010-08-03T11:12:00.000-04:002010-08-03T11:12:31.769-04:00Another Surgery UpdateDear Friends:<br />
<br />
We just heard from the nurse and she said that things are going along as planned. Emory came off the heart lung bypass machine completely and successfully. They are in the process of sewing him up right now and then the dr. will come down to talk with us in person. We will get to see him after he gets settled in the CICU which should be around 12:30 or 1:00. Will keep you posted.....<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com2tag:blogger.com,1999:blog-1326054039244967089.post-51866968170249440222010-08-03T10:08:00.000-04:002010-08-03T10:08:24.573-04:00Surgery UpdateDear Friends:<br />
<br />
The nurses came this morning to our room around 7:00 and walked us back to the operating area. Claude and I were able to carry him back to that area and be with him until we go to the door that entered the operating room. Since we've been in the waiting room, we received 2 phone calls updating us on the progress of how he is doing. He is starting to come off the heart/lung bypass machine right now. They have repaired the holes and are beginning to look at the valve and the arch. Once he comes off the machine, they test the heart, and they make sure that there are no leaks, they will sew him up and take him to the CICU. We are currently in the surgical waiting room on the 3rd floor but will be in various places throughout the hospital for the duration of the day. Claude and I have to stay in the waiting room until the dr. comes back to talk to us after the surgery is complete. If you would like to visit and can't find us, just call one of our cell phones. Will keep you posted......<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com1tag:blogger.com,1999:blog-1326054039244967089.post-70525052518845150972010-08-02T22:55:00.000-04:002010-08-02T22:55:38.378-04:00Surgery is TomorrowHey Everyone,<br />
<br />
From my last blog until now has been a very busy time for us. On Sunday, we went to church, had lunch, the boys had a birthday party to go to, and then we packed our bags and headed to the hospital for Claude and I to stay the night. The team of doctors always does rounds in the mornings around 9:00 and we wanted to make sure that we got to talk to them as well as possibly the surgeon. Upon our arrival, I just happened to ask the charge nurse for linens and towels (not knowing she was the charge nurse) and we got to talking and her and Emory's night nurse helped us out beyond measure. They were fabulous! Vicki (the charge nurse) made it very clear to the team of doctors at shift change that we "needed a plan".<br />
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So, one of them was here bright and early to let us know that they would all be back around 9:30. Sure enough, they arrived around 10:00 and it was Dr. Kanan (spelling is off), his "fellow", and the resident. We began talking with him about how Emory was doing and he informed us again of the meeting that the surgeons have every Monday afternoon at 4:00 to discuss all of the cases, schedule them for surgery, etc. Towards the end of all our questions, he got beeped and called out into the hall. Dr. Kanan is the one who diagnosed Emory within 24 hours of him being born and is the one who came to my room at Fayette Piedmont to tell us the news of Emory's heart condition. We have great respect for him because of how he handled things on that day as well as his professionalism.<br />
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Five minutes after being beeped, Dr. Kanan came in and told us that there was a cancellation for tomorrow and they were planning on putting Emory in that slot unless an emergency situation came in through the night. He also said it was tentative so we waited until the surgeon's assistant came in to let us know that the surgery was scheduled for tomorrow morning at 7:30. After that, we had a flood of doctors, anesthesiologists, social worker, volunteer, etc. come to the room in addition to Emory having some x rays done and blood drawn. Once it calmed down a bit, we started calling, texting, and facebooking to update everyone.<br />
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Tomorrow morning, we will go back with Emory around 7:00 to a private area just outside the operating room and pray with him. Then, the surgeons will take him into the operating room and we'll go to the waiting room. The entire process is about 5 hours. The first hour is spent sedating him, putting the iv and other necessary tubes in, etc. The next three hours are spent doing the actual procedure and the final hour is spent taking him off the heart/lung bypass machine and getting him settled into CICU. While in surgery, they will repair the holes in his heart and they will assess what, if anything, needs to be done to the pulmonary valve and right aortic arch. He will then be sedated for a couple of days and will stay in the CICU for 3-4 days depending on how well he does to start breathing on his own. After that, we will come back to the area where we currently are which is called the cardiac step down unit.<br />
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We are staying at the hospital tonight so that we wouldn't have to leave our house so early in the morning. My parents want to be here early as well, so the boys are staying overnight with some friends of ours. Thanks to the Keaheys for being willing to take care of my two boys just after steam cleaning your carpet =). So, that is where we are right now. Feel free to stop by or call. But, most importantly, keep us and everyone involved with the surgery in your prayers. I will update the blog periodically throughout the day tomorrow.<br />
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Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0tag:blogger.com,1999:blog-1326054039244967089.post-38095085340699478552010-08-01T00:43:00.000-04:002010-08-01T00:43:22.589-04:00Saturday in the HospitalDear Family and Friends:<br />
<br />
We went home very late last night from the hospital and were ALL up here today. Thanks to the Riesberg's for keeping Emmitt and Eli last night and thanks to Gremmy and Papa for coming back into town today to help us with the boys. After picking the boys up today, Claude took them for haircuts, we had some lunch, packed a bag of movies, books, etc. and headed up to the hospital. While we were there, we visited the library, read books, and watched several movies. Although they got a little restless, I'm glad that they were able to see Emory and that at least Emmitt could gain a little more understanding about what is going on. <br />
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Upon our arrival today at the hospital, we talked with the nurse and the "fellow" about Emory's condition. They think he is doing better, but mommy and daddy aren't so sure. He does tend to throw up when they stop the feeding tube to feed him with the bottle, so thankfully the nurse is not going to give him the bottle today since that seems to keep more food in him and to keep him calm. That is what my "mommy gut" tells me to do anyway, so I'm thankful for a nurse who sees that as well. He is breathing at about 65 to 75 or more breaths per minute. In addition to increasing his lasix, they have also added another diuretic called aldactone that will help with his potassium levels. We have yet to see how these two drugs will affect his calcium level, which is so important in regards to the DiGeorge Syndrome. In a nutshell, Emory is not necessarily doing worse but he also has not had a ton of improvement. His weight is pretty much the same as when they admitted him into the hospital on Thursday. But, we also don't know if his previous weight gain was from the formula or from extra fluid on his lungs. We really don't have any way of knowing that. Really, there are several issues going on, but the consensus seems to be that if we can get the heart fixed, that everything else will be somewhat easier.<br />
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They gave us the option to go home before we have the surgery. They did say that at best case scenario, they would do the surgery the middle of next week, but it could be more like the end of the week. This is due to the volume here at the hospital and the surgeons schedules. They have 3 surgeons and then only so many CICU beds and so many "step down beds". Let me clarify what I was saying yesterday.....Emory's case is critical and necessary; however, when it comes to heart issues and heart surgeries, his is a little on the milder end. After talking with the charge nurse last night, we understood things a little better. When we left the cardiologist office on Thursday, he saw the urgency for surgery very soon. And, when we arrived here at the hospital, they agreed. But, the cardiologist doesn't know the surgeons schedules and obviously don't know how busy things are here, so that is why we have this type of situation.<br />
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Claude and I both feel that it is necessary to leave Emory in the hospital until he has his surgery. We feel that by doing so, he will be monitored 24/7, will have documentation of his throw up episodes, will have constant feeds so he can gain more weight, etc. We've seen the actual attending physician (cardiologist) a couple of times, but not much. We have yet to see the surgeon. So, we are home tonight and have church and a birthday party for one of Emmitt's friends tomorrow afternoon. After that, we will both stay at the hospital tomorrow night in order to try and talk to one of the surgeons on Monday morning. <br />
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That's about all I can type right now. My eyelids are heavy! I will keep this blog updated daily and will post as soon as we know something about his surgery date. Thank you for all of the thoughts and prayers as well.<br />
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Blessings,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com14tag:blogger.com,1999:blog-1326054039244967089.post-74746464799480871992010-07-30T17:52:00.000-04:002010-07-30T17:52:52.196-04:00UpdateDear Family and Friends:<br />
<br />
Things change here around the clock. We still don't have a definite date for surgery. As of right now, they have increased Emory's lasix to 3 doses a day rather than 2 doses a day. He is still on the ng tube and is taking 3 bottle feeds a day. However, I fed him one of his bottles a few minutes ago and he threw it up within 3 minutes. We are only feeding him an ounce at each feeding with 2 teaspoons of rice cereal. Supposedly, the cereal helps with his swallowing, but something else is going on that it comes up so fast. <br />
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One person has told us that we will be in the hospital until surgery and one has told us that we may go home before surgery. So, it's all up in the air right now. We took a tour today of the CICU and it was very helpful and informational Some things we do know for sure are that....<br />
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They cancelled 4 surgeries for today because of all the critical cases that had come in and because of how busy they are. Mind you, there are children that come here from all over the state as well as the region for their heart surgeries. Although Emory needs surgery too, his case is not critical. And, it all depends on when the surgeons can get him scheduled.<br />
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The CICU has 24 beds and it is all open. They are staffed for 19 and have a 1 to 1 ratio. It is just one big open room with beds lined up. There are certain hours of the day that no one is allowed at his bed side. Otherwise, two people can be at his bed side when there is not a shift change. This can be family, pastors, etc. which is good so that any family that comes in from out of town can go see him. But, I was very thankful for the tour because now I have an idea of what Emory will look like after surgery. Being in the NICU first has helped us some.<br />
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After surgery, he will be in the CICU for a couple of nights and then will go to the cardiac step down unit which is where he is now. Of course, all of this depends on how his progress is after surgery. He is resting right now and his room in right across from the nurses desk, so he is in good hands if we are not in the roomm with him.<br />
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Basically, we are in a holding pattern. I will update facebook and the blog as soon as we know something.<br />
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Have a Great Weekend,<br />
<br />
TwilaClaude and Twila and familyhttp://www.blogger.com/profile/09730468834147776709noreply@blogger.com0