Friday, July 30, 2010


Dear Family and Friends:

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. 

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....

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.

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.

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.

Basically, we are in a holding pattern.  I will update facebook and the blog as soon as we know something.

Have a Great Weekend,


Thursday, July 29, 2010

Back in the Hospital

Good Evening Everyone,

Update on the feeding was going well at home.  They wanted us to bottle feed Emory 3 times a day with cereal in his bottle, which we did.  However, he threw up every bottle.  With the other 21 hours in the day that he was on the feeding tube, he spit up some, but it was very minor and what you would consider a normal newborn to be spitting up.

We had our cardiologist appointment today at 2:20 and went through the usual routine of weight check, blood pressure, oxygen check, EKG, etc.  Emory's weight was up to 10 pounds 4 ounces, which is 14 ounces more than what it was at our last cardiologist visit two weeks ago.  That is what they wanted because average children gain about an ounce a day when they are infants.  So, that was good; however, all of that was gained within the last few days because of Emory being on the feeding tube.  After talking with the dr. briefly about our concerns, he said we needed to do another echocardiogram and that he needed to discuss some things with some of the other doctors.

After the echocardiogram, the nurse brought us papers indicating we were leaving the dr. office and going to the hospital.  This left us very confused but it was confirmed when the dr. came in.  He said that the weight gain was good and that by waiting for Emory to get older or to weigh more would really not make a huge difference in the surgery, how he reacts to it, his survival rate, etc.  He says that there is a 98% chance that Emory will come out of the surgery just fine but it will be afterwards that we will have to watch out for infection.  Mind you, I think doctors just have to say those things.  Another cardiologist told us they had no doubt that he would come out of surgery fine.  Of course, we all know that it's out of our hands anyway!

So, we left the dr. office, drove to Eggleston, got checked in, met with the day nurse, talked at length with the "fellow", and then met with the night nurse very briefly before coming home.  They were going to do some chest xrays tonight and move him to a room that will be right across from the nurses station.  Also, his monitors are all hooked up to the nurses cell phones so that if his oxygen level decreases too much or if he stops breathing, it will alarm them immediately.  We needed to come home, get our other two boys settled, get some things done, etc.

My parents were still here from when they brought the two boys home from being in TN.  They left around dinner time to go home, get their motor home, clothes, etc. and then will come back on Saturday to keep the boys while we're at the hospital.  We don't know any definites yet regarding Emory's surgery, but do know that he will have his open heart surgery within the next few days.  Afterwards, he will be in CICU and then the cardiac step down unit.  We will meet with a social worker tomorrow and get a tour of the CICU and she will fill us in on what to possibly expect.

The attending physician that is on tonight is the one that came to my room just after giving birth and told us of Emory's condition.  If I'm not mistaken, he's the one who diagnosed Emory in the NICU when he was less than 24 hours old.  Another physician comes on in the morning and all of the doctors and the cardiothorasic surgeons will meet tomorrow morning and will schedule his surgery.  The cardiologist just felt that it would be good for him to be in the hospital for his breathing to be monitored before surgery.  Of course, if a blue baby is born or there is some other kind of emergency, those surgeries will take place before Emory's.

We did not expect this to all happen so soon.  We knew it was coming, but didn't know it would be now.  But, we do know that all of this is in God's hands and all we can do right now is trust in Him.  Please keep us in your prayers as well as family and friends who are taking care of the other two boys and of course, the physicians taking care of Emory.  Once we have a surgery date, we will post that immediately on facebook and will update the blog. 



Tuesday, July 27, 2010

Home from the Hospital

Good Evening Everyone,

We arrived home from the hospital yesterday around 5:00 p.m. and we are just now getting "settled in" and unpacked.  Emory is doing better and is not throwing up as often; however, it is due to the fact that the majority of his food goes through the feeding tube.

We left the hospital with an ng feeding tube which goes through Emory's nose and down into his stomach.  This is something that they showed us how to insert here at home because it has to be changed out every 7 days.  However, I will take him to the dr. office or hospital to have that done because I do not feel comfortable doing that.  He gets a continual feeding of 1 ounce every hour.  We stop it twice a day to bottle feed him so that he does not forget his suck/swallow skills.  He also receives his calcium and cardiac medicines through this tube which helps us to know that they are getting in his system and staying there.  When we didn't have the tube and he was throwing up so much, I was afraid he wasn't getting the full potential of his meds.  Now we have the confidence that he is getting his meds.  He has already gained weight and we follow up with the cardiologist on Thursday and the GI dr. on Monday.

On Monday, he did have the swallow test.  This showed that when he has straight formula (a thinner liquid), he aspirates and the fluid goes into his lungs, which over time can cause pneumonia.  When he has thicker fluids (with rice or oatmeal cereal), he does not do all of that and he takes it better.  So, when we give him the bottle feeds, he gets oatmeal cereal in his bottle.  We were doing this before with rice cereal in order to help with the reflux, but Emory didn't process it very well.  The times we have bottle fed him here at home, he has spit up after every time.  This tells us that more than likely the LES (Lower Esophagial Sphincter) is not working properly or is not fully developed.  Hopefully, this is something that Emory will grow out of or something that can be corrected after he has his heart surgery.  Righ now our goal is weight gain and we'll assess everything again at the cardiologist office on Thursday.

Our older boys, Emmitt and Eli, are on their way home with Gremmy and Papa.  They have had a great time in TN, but we are ready to see them.  I hope to be able to post some pics of all the boys soon, but also have to gain a little more computer knowledge.  We'll keep you posted on Emory's progress and visits as they happen.  Hope everyone is staying cool during these hot summer days!

Take Care,


Saturday, July 24, 2010

Emory's Stay at Scottish Rite

Dear Family and Friends:

Here we are at day 3 in the hospital here at Scottish Rite.  Emory is doing better and they are still running tests on various things. 

Originally, the dr. didn't think it was necessary to do a feeding observation.  Emory was doing well on his feeding tube and hadn't thrown up very much, so he didn't order the feeding observation.  Then, after talking with the nurse and the nutritionist, we decided that we should request to have one done.....we might as well do all we can while he's in the hospital.  So, a speech pathologist came in this morning to observe Emory eating from the bottle.  After observing him eat, she was a concerned that he coughed after he ate, his swallowing, and that he needed so much chin support.  As a result, they are going to do a OPMS test (swallow test) on Monday.  They are going to feed him through the ng tube (in his nose) all weekend because the speech pathologist only wants him to be bottle fed by a medical professional just in case he starts choking during the process.

So, our problems with Emory's eating include several aspects.....

His heart is working so fast and so hard that it burns the calories just as fast as he is eating.

There is a possibility of something being wrong with his Lower Esophagel Sphincter (LES) which is a muscle that helps keep the food down.  It's possible that this muscle did not fully develop or simply that it's just not working.  This is something that can be corrected with surgery but also that kids outgrow over time.  For now, we are going to just wait and see how things go for him.

They changed his formula from Neosure to Alimentum.  Alimentum is supposed to be for babies with digestional problems.  Although he's done better, I don't think that the formula is playing a huge part in all of this.

For babies with DiGeorge Syndrome, there are several anomalies in the back of the throat and with the mouth that can play a huge role in how a baby eats and how the weight gain goes.  They will be able to look at these on Monday when they do the swallow test. 

More than likely, when we leave the hospital, we will leave with him being fed with a tube.  This will help him keep more food down and will hopefully help him gain weight.  It would be ideal for him to weigh 12-13 pounds when he has the open heart surgery, so the closer we can get to that the better.  At our last cardiologist appointment, she said it was ideal for them to do surgery at 6 months, but she didn't think he would be able to wait till then.  We see the cardiologist again on Thursday to see if he has gained any weight and to reevaluate things.

It is pretty much all a vicious cycle and several of the things he's dealing with go against each other.  So, you can keep praying for him to gain weight, for the swallow study, and for the doctors to have wisdom in knowing the best time to do the surgery.

Again, we appreciate everyone's prayers and all the little things.  Thank you to the Nobles for dinner last night.  And, thank you to Eric Heim and Doug Barnett for taking care of our grass being cut on two different occasions.  Also, a big thank you to Gremmy and Papa who are taking care of our other two boys at their house in TN.  Every gesture is greatly appreciated.

We'll update the blog again when something new happens, and will especially give a report on Monday.  Have a great weekend!


Claude and Twila

Thursday, July 22, 2010

Emory in the Hospital

Good Evening Family and Friends:

We left my mom's in TN this morning at 6:00 in order to make an 11:15 appointment with another gastro dr. to get a second opinion.  We managed to arrive early so that we could feed Emory while sitting in the parking garage at the professional building at Scottish Rite.  Although he ate very well, he managed to throw it all up within a few minutes.  So, we went on to our appointment, filled out all the paper work, cleaned up the throw up and changed his clothes, and were called back to see the dr.

The dr. did do a thorough exam on Emory and talked with us at length.  We were very persistent that we needed to do something different than trying a different medicine and that we needed results soon.  So, they have admitted him into Scottish Rite, have changed his formula, have inserted an NG feeding tube, and are observing him through the night.  His weight when he left the NICU 6 weeks ago was 8.6 and today at the hospital it was 9.2 which means he has lost weight.  Not too long after we got home today the nutrionist called me to ask several questions in order to know the best way to treat him.  After I told her how long it was taking him to eat, how much he was throwing up, how little he weighed, etc. she was very concerned.  They are going to do a couple of swallow type tests tomorrow....I honestly forget what all she said they were going to do.  They are also going to do a cardiology consult in the morning.  Although I hate it for Emory, I hope that he does throw up for them so they can see what he goes through when this happens.  Hopefully we will get some answers over the next day or two.

Claude suggested that we stay home tonight to get a good night's rest and just go up early in the morning.  Although I know it is best and that Emory is ok and in great care, it is still hard to do.  Our other two boys are still in TN with their Gremmy and Papa and are having a blast.  We are glad to be home, but it feels weird without the boys here.  We are very grateful for the "little" things that mean so much and that are HUGE blessings to us right now.  Thanks to Peter and Jessica who brought us dinner tonight and thanks to Shannon and Wendy who came to clean the house and help unpack bags.  All of which was totally unexpected and greatly appreciated!  We are also very thankful for all the prayers from our New Hope family, as well as our friends and all of our other family members in LA, TN, AL, and FL.

We'll go to the hospital in the morning early anticipating some answers and good news.  Please continue to keep us in your prayers for Emory to keep food down and gain weight like a normal baby should.  Will update the blog tomorrow.



Saturday, July 17, 2010

Cardiologist Visit

Dear Family and Friends:

We saw the cardiologist on Thursday for our routine visit.  There had been some discrepancies on Emory's weight at our last appointment......the number that was written down and the number we were told were not matching up.  They measure in kilograms, which makes it challenging for my brain.  He weighed in at 9 pounds 6 ounces, which means that he has only gained a couple of ounces in 2 weeks.  Ideally speaking, newborns should gain an ounce a day.  The dr. told us that she would be thrilled if he gained half an ounce a day.  Although we are feeding him the highest calorie formula possible, every 3 hours, he still isn't gaining weight.  All of this is a result of his heart condition and the DiGeorge Syndrome.  His heart works so hard for him to eat that as soon as he eats it, the calories burn off because of his heart beating so fast.  His reflux is also about the same.  He's thrown up a lot in the last couple of days and every day is different......regardless of what we do or don't do.

We are currently at my mom's in TN.  My dad had his annual board meeting for the ministry and we came up for that.  The boys are having a blast and Emory is being held a lot.  My poor sister has been thrown up so much and the washing machine never stops!  I'm going to have to de program my other two boys when we get back to GA.  They've had their cousins undivided attention for several days now and are loving it! 

Hope everyone is having a great weekend and has a blessed Sunday.

Take Care,


Saturday, July 10, 2010


Hey Everyone,

While we were in the NICU, two of Emory's nurses (Lori and Vonnie) gave us a movie titled "Something the Lord Made".  It's about babies that had "blue TET" and the pioneer surgery that two men created in order to save the lives of children with the condition of Tetralogy of Fallot.  It is produced by HBO Films and was a great movie that actually helped me as a mom understand things a little better regarding Emory's heart.  Although Emory is a "pink TET", he will have the same kind of surgery done when the cardiologists feel the time is right.  Had he been a "blue TET", he would have already had the surgery.  So, if you're interested, have some spare time, and can find it, feel free to watch it.  Have a great weekend!


Thursday, July 8, 2010

Gastro visit

Hey Everyone,

We had another good visit today with the dr. concerning Emory.  First of all, it was helpful to know where we were going, where to park, etc.  This will be one of the clinics/doctor's offices that we will visit frequently, so it helps now that we kind of know more about what we're doing regarding driving down there.

The gastro dr. wants us to try a couple of things before they insert a feeding tube.  The insertion of a feeding tube is done surgically and they typically don't want to perform that surgery on such a small child.  We are currently giving Emory 22 calorie formula and they gave us a recipe to make it 24 calorie formula.  We also are going to give him his Prevacid differently in addition to giving him a medicine that will help him with going to the bathroom.  The Prevacid really doesn't help with the reflux, it mainly helps with the acid and helps protect the esophagus.

Ultimately, Emory's eating problems and problems with gaining weight are a result of the DiGeorge.  But, whether he has that or not, the dr. did say that babies who have reflux typically don't get really bad until they are about 2 months old, which explains Emory.  And, that explains why he didn't spit up as much in the NICU.  The dr. also said that it would get worse before it gets better.  I know those are not the most encouraging words, but I was very thankful for him taking the time to sit down with us, to not be hurried, to explain things with us and communicate clearly, to look us in the eye, to be honest with us, etc.  All of the doctors that we have seen so far have been really good about doing all those things.  It's easy to assume that a dr. should always do those things, but in today's society, some of those things are rarely seen and practiced but are greatly appreciated.  It's the little things!

So, for now, our laundry may increase and we may smell like formula and spit up from time to time, but that is just our season of life.  Next week we see the cardiologist again on Thursday and then leave for TN for some time with family.  It will be nice to have a change of scenery and to have some extra help.....all that to come home a week later and unspoil my kids =)! 

Hope everyone has a good weekend and stays cool!



Today's Dr. Visit

Good Evening Everyone,

On Tuesday afternoon, I decided to call and confirm our appointment for today and to ask a few questions regarding paperwork, directions to the clinic, parking, etc.  Well, the receptionist proceeded to tell me that our appointment was August 4th and not July 7th.  She also informed me that she had no records for Emory, his diagnosis, his bloodwork, etc.  All of this was around 4:00 in the afternoon, meaning there was not much time left in the day to obtain records.  Needless to say, I was very upset.  We have been scheduling everything around this appointment.  Thankfully, the nurse told us to come on in but not to break our necks to get there right at 8:00 and they would have to work us in.  They only see 5 new patients a month due to the extensive exams.  We were going to the 22q11 clinic at Emory Children's Center and thought that we were going to see 5 doctors today but actually only saw 1.  As we were driving there this morning, we really didn't know what to expect, but knew that we had to leave with some answers.

The nurse came in and sat down with us and gave us a ton of information.  This disease, DiGeorge Syndrome, has only been studied by doctors and diagnosed in patients for about the last 10 years.  It is very new to many in the medical field.  It is very complex but also very interesting.  They gave us a binder with various items in it but also a list of resources about this disease.  One of those resources is the website  If you have time and are interested, go to that website, click on resources, publications, and then the "During the First Years...." booklet and read page 3 especially.  This will give you an idea as it did for us how things were formed in Emory and what the deletion of this chromosome actually means.

Claude and I are going to have our blood tested to see if we carry any signs of deletion of this chromosome.  It is very possible for an individual to have a chromosomal deletion issue and never know it due to no outward facial features.  More than likely, Emory is a random case.  However, if they see anything in our blood, they will test Emmitt and Eli as well.  Regardless of what they see though, Emory has a 50/50 chance of passing this on to his children, when that time comes.

The nurse told us that they don't like to label a child with a diagnosis of complete or partial DiGeorge Syndrome.  She also said that she has never seen any 2 children that have DiGeorge with the same symptoms or issues.  Every child is different at every stage of life.  For us, we are focusing on the next 6 months or so.  After that, we'll focus on Years 1-3 and so on.  We know what to look for but don't know what to predict Emory dealing with.  For me, I like to use the analogy of a tree that produces several different kinds of fruit but the root of that tree is the DiGeorge Syndrome.  Emory may deal with apples and oranges right now (heart and feeding issues) and grapes and bananas (speech, learning, or muscular issues) later.

We saw the Immunologist and she said that we could decrease Emory's calcium dosage each day.  She also said that his bloodwork looks good and feels that his immune system is not as bad off as it could be.  However, to be on the safe side, we will have his blood taken again in about 4 weeks and reevaluate his calcium levels, white blood count, etc.  That's basically the only thing she deals with.  Although the DiGeorge is the "root" of the problem, any other issue is taken care of by another specialist. 

So, we go back downtown tomorrow to see the gastro dr.  And, we'll continue to see the cardiologist in a totally different office as well.  The cardiologist needs him to gain weight.  According to the scales today, Emory has not gained a complete pound since he was discharged from the NICU a month ago.  We've worked very hard to feed him very often, using the high calorie formula, and adding cereal to it.  After all of that effort on our part, we feel very defeated in the whole process.  He just doesn't keep very much down after his feedings.  And, for all of you out there whose children have reflux, we have tried everything and realize now that his issues are from the DiGeorge Syndrome and will be there regardless of the position he's in, type of formula, medications taken, etc.  We will have a swallow test done tomorrow and then put together a plan of action that may or may not include surgery and/or a feeding tube.  At this point, I'm ready for them to do just about anything.

The gastro dr. will also refer us to a cardio velo facial dr. at Scottish Rite so that we can assess the formation of the back of Emory's mouth, get set up for early speech therapy, etc.  Things that you wouldn't think are connected to one another when it comes to eating, speech development, etc. are all intertwined and connected.  It's very interesting!

Our prayer is not for Emory to be healed of his chromosomal defect.  I believe God created him that way for a reason.  I don't know what the reason is and I know our road ahead will not be easy.  But, God has a purpose in all of this and we may not even know what that is until we get to Heaven. 

You can pray for us tomorrow as we meet with the gastro dr. at 2:30 at Emory Children's Center.  Pray for the dr. to have enough wisdom so that we can get a solution soon and Emory gain some weight.  Also, pray for us as a couple to keep our energy up and our immune system good as well.  Lastly, pray for Claude's employment.  God has brought us too far in the journey called life to let us down now.  We are believing Him for provision of a job for Claude as well as for a solution to the feeding issue.

I trust you all had a wonderful 4th of July!  I'll post another update tomorrow evening after we see the gastro dr.  Have a wonderful night and weekend!


Twila Williams

Friday, July 2, 2010

Cardiologist Update

Dear Friends and Family:

So, we saw the cardiologist today and although overall the appointment went well, I didn't come out of there feeling like we had been accomplishing anything over the past three weeks.  From the time we saw the cardiologist three weeks ago until now, Emory has not gained any weight.  The dr. said that he looked good, but would still like to see him be gaining more weight.  He felt as though it was a result of the heart issue, his reflux, and his DiGeorge syndrome combined - not one isolated issue.  We will follow up with him in two weeks on July 15th and depending on Emory's weight gain, may discuss the possibility of doing surgery sooner than six months of age.  Between now and then, we are trying different ways of feeding him to help with the reflux and him gaining weight.  And, we will see the DiGeorge doctors on Wednesday, July 7th.  They will help us have a better understanding of how to handle things presently and in the future regarding the heart issue, immune system, muscle growth and development, etc.  In a nutshell, that's today's update......will update again soon.  Have a great holiday weekend and be safe!