Wednesday, December 29, 2010

Williams Family Christmas Newsletter - "Part One" (quite lengthy)

Dear Friends:

 
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. 

 
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.

 
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!

 
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!

 
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 http://www.22q.org/ or http://www.vcfs.org/.

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. 

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". 

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!

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.

Things I am thankful for......

  • 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".
  • 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.
  • God placed us in an area where the children's hospital is in the top 3 in the nation regarding cardiac care.
  • 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!
  • 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.
  • 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)
  • Prayers of pastors, churches, friends, etc. all around the world....literally!
  • 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              
Emory is taking his bottles well
Emory is holding his bottle on his own most of the time
Emory is grabbing at toys
Emory is eating jar baby food
Emory smiles at us
Emory knows us and responds to us
Emmitt and Eli have adapted so well to everything through all of this

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.

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.

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.

In Him,

Claude, Twila, and the "3E boys"
cdubcu@gmail.com
twirla777@gmail.com
http://www.claudewilliams.com/

Thursday, December 23, 2010

Update

Be on the lookout for our Christmas newsletter coming soon!

Thursday, October 14, 2010

Emory is Home

Hey Everyone,

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.

In Him,

Twila

Tuesday, October 12, 2010

Emory in the Hospital

Hey Everyone,

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.

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.

Thanks for your prayers,

Twila Williams

Friday, August 20, 2010

Update

Dear Friends:

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! 

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. 

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.

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.

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. 

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.

Hope everyone has a good weekend.......be blessed!

Twila

Sunday, August 15, 2010

Back to School

Well, 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.

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. 

Hope you all have a wonderful Monday!

Blessings,

Twila

Thursday, August 12, 2010

Pure Exhaustion

Dear Family and Friends:

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.

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. 

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.

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. 

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.

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!

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.......

Take Care,

Twila 

Tuesday, August 10, 2010

Feeding Issues

Dear Friends:

Emory will not be going home today due to some feeding issues.  I will give more of an update later.

Have a good day,

Twila

Monday, August 9, 2010

The Latest on Emory

Dear Friends:

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.

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.

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. 

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. 

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!

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.....

Take Care,

Twila

Saturday, August 7, 2010

Out of CICU

Dear Friends:

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!

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.

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.

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.

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.

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".

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......

Twila

Thursday, August 5, 2010

Busy Day

Good Evening Friends: 

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.

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.

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!

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.

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......

Until Then,

Twila

Wednesday, August 4, 2010

A Day in the Life....

Dear Friends: 

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.

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!

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 http://www.beadsofcourage.org/.  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). 

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.

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.

Blessings,

Twila

Tuesday, August 3, 2010

Last Update for Day of Surgery

Good Evening Everyone,

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.

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.

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.

Good Night,

Twila

Out of Surgery

Hey Everyone,

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.

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.

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.

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.

Take Care,

Twila

Another Surgery Update

Dear Friends:

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.....

Twila

Surgery Update

Dear Friends:

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......

Twila

Monday, August 2, 2010

Surgery is Tomorrow

Hey Everyone,

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".

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.

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.

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.

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.

Blessings,

Twila

Sunday, August 1, 2010

Saturday in the Hospital

Dear Family and Friends:

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. 

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.

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.

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. 

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.

Blessings,

Twila

Friday, July 30, 2010

Update

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,

Twila

Thursday, July 29, 2010

Back in the Hospital

Good Evening Everyone,

Update on the feeding tube....it 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. 

Blessings,

Twila

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,

Twila

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!

Blessings,

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.

Blessings,

Twila

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,

Twila

Saturday, July 10, 2010

Movie

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!

Twila

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!

Blessings,

Twila

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 http://www.22q.org/.  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!

IN HIM,

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!

Blessings,

Twila

Tuesday, June 29, 2010

Good Evening Everyone,

Just an update on Emory......we took him today for his Upper GI and he did really well considering how hungry he had to be when we went and how nasty the barium is to drink.  We had a great nurse and technician and they allowed us to see how the barium worked when it went down his esophagus and into his stomach.  Just as soon as it hit his stomach, it immediately started to come back up.  Although he was given a preliminary diagnosis of something else that was going to require surgery, the pediatrician called us around 6:00 to let us know that he has GERD.  Which, Eli had the same thing, but not nearly as severe.  So, we are going to stick with the "ready to feed" formula, continue with the cereal, and begin to give him Prevacid once a day.  We were using the Zantac, which was great because it was a LOT cheaper.  But, he threw up the Zantac as well.  If all of these tactics dont' work, then we will go to "Plan B".  What that is, I don't know.  I'm just praying that it will work so he can gain more weight, will feel better, and will enjoy his feedings.  Other than that, things are about the same.  Like I said in yesterday's update, we will see the cardiologist on Friday and I will give an update then. 

Tomorrow begins a new chapter for Eli......we have been lightly potty training him and we are getting rid of diapers tomorrow!  Hopefully, this will "take".  A jar of skittles can go a long way when you're trying to get a little boy to go potty.....=).

Hope all of you have a good week.....will update again on Friday.

Blessings,


Twila

Monday, June 28, 2010

Dear Family and Friends:

I trust all of you are enjoying your summer so far.  Although we won't be taking any big vacations this year, we are enjoying our time as a family doing this and that.  Claude is working part time with the football team at Landmark in the mornings and job hunting in the afternoons and evenings, so his schedule is very flexible which allows him time to go to dr. appointments or any other family things.  This past Saturday, we went to the Ocoee and the boys played in the water and on the rocks while we watched all of the boats come down the rapids.  We all had a good time and were able to see some friends in Chattanooga on our way home as well.  It was great to catch up with the Jennings and for us to get away and have a change of scenery....boy was that needed!  Once we get some computer issues settled, Claude will get some pictures up. 

Gremmy and Papa came to see us last Friday.  They were flying through Atlanta and were able to get their flight changed so that they could have a long layover.  Claude went to the airport to get them and they were able to spend about 5 hours with the boys.  We had brunch, Emmitt and Eli had a blast playing with Gremmy, both boys enjoyed riding their cars outside and showing off for Papa, and Gremmy enjoyed feeding Emory.  However, she did get to see how challenging it is to feed him lately.  He really goes to the extreme with his eating in that he either falls asleep and is too tired to eat or it all comes back up due to his reflux.  With his heart condition, he just gets so worn out so quickly when it comes to eating.  And, the reflux may or may not be due to something regarding the DiGeorge Syndrome.  We really don't know.

Overall, Emory is doing about the same.  My days, nights, and weeks tend to run together these days.  Emory usually starts a fussy routine about 7:00 in the evening and it varies as to how long it lasts, etc.  This is when he just wants to be held and looked at all night long.  But, that's also when mommy is finishing dinner, doing dishes, bathing two other kids, etc.  All you mommies know what I mean!  The biggest thing we are dealing with right now is Emory's reflux.  My pediatrician told me how common it was in newborns but I really thought he was just saying that until I talked to another mom that we met in the NICU and she said her boys were going through the same thing.  So, I just determined to try and watch every little thing regarding what we do around the time he eats, the position he is in when he eats, how often we burp him, etc. to see if that helps.  We also were going to start using the "ready to feed" formula rather than the powder formula.  However, today may have helped change all that.

I took all 3 boys to the dr. today.  Emmitt and Eli have had this lingering cough, but I mainly went for several other reasons.  When Emory had his calcium checked last time, they called and said that they didn't have enough blood to run the test and we needed to go have blood drawn again.  Since that office is next to the pediatrician's office, we just lumped it all into one day.  They got enough blood today and then we went to see the pediatrician.  While we were in the waiting room, I finished feeding Emory and he spit it all back up.  Two hours later while we were in the middle of our visit with the dr., I fed him a little bit and he spit it all back up again.  The dr. was shocked at how much he spit up and how he spit it up.  He was even more shocked that this was a normal routine for me.  I carry several burp rags and a nose sucker with me at all times because of how normal this has become for us.  However, the dr. didn't realize it was so bad and he ordered an Upper GI which we will have done tomorrow (Tuesday) morning at Fayette Piedmont.  I'm thankful to all of our friends who have helped take care of Emmitt and Eli, but I know they are so excited to go to Mrs. Susan's house tomorrow to play while Emory has his test done.

As for the rest of the dr. visit, we all have horrible chest colds, Eli has an ear infection, and I have pink eye in both eyes.  But, I'm sure after antibiotics, we'll all be good to go by tomorrow afternoon!

Two things that I'm just now catching on to.......(forgive me if I'm repeating myself)

1.)  We will see the cardiologist again July 2nd.  They will take all of Emory's vitals, weigh him, do an EKG and an Echocardiogram.  Every time we see the cardiologist, they will do this same routine.  And, we will see him every 2-3 weeks until surgery time.  I guess that if something changes and they see the need to do surgery before he is 6 months of age, they will.

2.)  Our next big visit to doctors will be on July 7th.  We will see the only group of doctors in this region that deal with DiGeorge Syndrome.  They are all at Emory University Hospital - which is linked with CHOA/Eggleston (Children's Healthcare of Atlanta).  On that day, we will see 5 different doctors which will include gastro, genetics, allergist, endocrinologist, and one other I can't remember.  I'm so thankful they are all together but my goodness what a long day that will be!  They will help us understand more about the DiGeorge Syndrome and its lifelong effects on Emory and his development.

So, that is where we are at today.  Please keep us in your prayers especially that we can figure out why Emory is spitting up so much.  He had only gained 5 ounces in 10 days and they are wanting  him to gain more than that so he can be as big as possible for surgery. 

We sure do appreciate all the cards, emails, phone calls, meals, babysitting, gift cards, etc. that everyone has given.  Nothing goes unnoticed!  May you all have a blessed week and we'll post when we get results from tomorrow's test.

In Him,

Claude and Twila

Saturday, June 19, 2010

Dear Friends and Family:

I trust you all have had a good week.  Althought it's late and I'm extremely tired, I knew if I didn't blog now on an Emory update, I wouldn't get it done over the weeekend.  Plus, I'm waiting for him to settle in for the next few hours of hopefully peaceful sleep.

Today was another day spent at doctor appointments.  We started the day off with Emory getting his 6 week shots and then followed it up with them drawing blood to recheck his calcium levels.  We should find out what those levels are around Wednesday of next week.  He has gained a few ounces within the week but should probably be gaining more.  So, the pediatrician wants us to feed him more at each feeding time.  However, his reflux seems to have gotten worse and he doesn't seem to be keeping as much down.  In addition to that, after he spits up so much, it's hard to know how much of his medicine he actually absorbed.  So, it's just one big vicious cycle.  He currently is on 5 medications, one of which is for the reflux.  The pediatrician said that he should outgrow it and that it's perfectly normal for preemies.

Our schedule is getting somewhat better.  I did get to sleep one night this week thanks to my husband getting up with Emory.  We basically do the last feeding at 12:00 a.m. or a few minutes after and then wait and see how long he will sleep.  However, as a result of what he became used to from the NICU, he still wakes up every 3 hours in the night to eat.  So, we usually end up feeding  him around 3:30 and 6:30 a.m.   Our days and activities just run together.  I have been trying to run any errands we have during nap time while Claude is here with the boys.  So far, that has worked really well. 

Tonight we went out for some dinner and I had to get some groceries as well.  So, the five of us ventured our way through Kroger.  It was quite funny.  Of course, I got home and realized about 5 things I forgot.......I just can't think straight with all the kids with me.  Claude pushed the buggy with all the boys and I pushed the buggy with the groceries.  It really was cute and Emmitt and Eli loved it.  Outside of doctor appointments and church, that was our first "public" outing with Emory.  We will limit those though due to his condition.  In fact, I am going to put a sign on his car seat, stroller, etc. asking people not to touch him.  So, if you see the sign, please don't be offended but understand that we can't be too careful with Emory and his chance of getting sick.

Although I could type many details of things we did this week, I'm just going to focus on the highlights.  One of those highlights this week was that we were able to visit the NICU nurses and take them some food trays in order to thank them for all they did for Emory.  Thank you to Doug Barnett for your help with this.  I think the nurses really enjoyed their "dinner" for that night.

One last thing.....if you send us an email, fb message, or voice mail and don't get a quick response, please don't be offended.  Just know that we appreciate all the thoughts, prayers, encouragement, etc. and will be in touch just as soon as possible.  Well, I must go for now......the eyelids are closing......I'll type more tomorrow as it comes to mind.  Have a great weekend!

Blessings,


Twila

Sunday, June 13, 2010

Dear Friends and Family:

It has been a very long and tiring week, but we are settling in.  The boys were able to enjoy VBS at church this week, which was a huge help to both Claude and I because we both had appointments in the mornings all week.  The week started off really rough due to no sleep because we were following the schedule that the NICU nurses sent us home with regarding meds and feedings.  Round about Wednesday or Thursday, we changed both schedules on our own.  After going to the cardiologist and pediatrician on Friday, we came to realize that our "parental gut instinct" to do that was just fine.

The cardiologist appoitment was good.  He was pleased with Emory's weight gain.  He told us what to be feeding Emory each day and Emory has already well exceeded that on a daily basis.  They did an EKG and Echocardiogram on Emory and things were pretty much the same with the exception of them finding two holes in his heart rather than one.  They said that all of this was repairable and we should look at having surgery when Emory is about 6 months old.  More than likely, we will see the cardiologist every two weeks.  He changed Emory's medications somewhat as well.

We also saw the pediatrician for the first time and checked everything out there.  He gave us a prescription for reflux and made some suggestions on some changes to make with his eating to help with the spitting up.  We will go back to see him in a week for the first round of shots for Emory.

You know, it's funny how things all fall together.  Mind you, we don't know what tomorrow holds and where we will all be.  However, when Claude and I moved here 3 years ago, it was with the sole intent of Claude going to seminary.  We only knew one family that lived in the area, had no jobs, had not even seen our apartment, etc.  All we knew was that Claude started classes 3 days after we moved.  Here we are, 3 years, 2 masters degrees, and 2 extra children later, and it amazes me how God places us right where we need to be.  I say all of that because we never thought in a million years that we would have an infant born with a heart condition and chromosomal abnormality.  But, we are in an area where the children's hospital (CHOA) is ranked 3rd in the nation.  In addition to that, it is ranked 3rd or 5th (respectively) in cardiology, neonatal, orthopedic, cancer, and pulmonary issues.  Also, the doctor that Emory will see in July (I can't remember his exact specialized title) is the only one in this area and is one of less than 50 of that kind of doctor nationwide.  While at the cardiologist office on Friday, we came to realize all of this information. 

Here's another couple of interesting facts (at least, they are to me)......
About half way through my pregnancy, I was diagnosed with polyhydramnios (basically carrying a ton of extra fluid) and as a result was having trouble breathing.  Due to that, my ob sent me to a cardiologist and I had an EKG and echocardiogram.  Of course, everything was fine with my heart.  Following that visit, I also had ultrasounds every week.  In all of those tests, not once did anything show up when they looked at Emory's heart.  For this mommy, it's very interesting that I had the same tests run that will become a routine thing for Emory's life.  Also interesting to me is that when we decided on his name being Emory, we did so because it was the only E name that we could agree upon.  Little did we know that we would end up spending time at Emory hospital here in Atlanta! 

Well, that's my tidbit of information for today.  Emory is crying and wanting to be fed right now.  He is now 5 weeks old, weighs right at 9 pounds, and has gained 2 inches in length.  Those are all signs of improvement that the doctors want to see.....praise the Lord!  We will attempt our first outing tomorrow morning to church.....Lord willing, we can all get out the door dressed, clean, in one piece, etc.  Will post again tomorrow and will try to put up some pics as well.

Have a blessed day,

Twila

Monday, June 7, 2010

Dear Friends and Family:

For those of you who are not on facebook or may not have heard yet, Emory is home from the hospital!  We took Emmitt and Eli to a friend's house last night for an overnight stay and then went to the hospital to finish up the final stage of the discharge process.  After all the forms, watching videos, and saying our goodbyes, we got home around 8:30 or 9:00.  And, boy was it a long night!

Emory did not come home with any tubes or machines; however, we have to wake him up every 3 hours for a round of medicines and a feeding.  Last night, he didn't want to sleep in between feedings though.  So, we are very tired today and hoping that tonight will go better.  We have several appointments this week including one to the pediatrician and one to the cardiologist.

Emmitt and Eli did not see Emory until after VBS today and they were hilarious when they came in the door.  Eli just sat in the recliner and watched tv.  He didn't this morning and still doesn't tonight want anything to do with Emory.  He will look at him every now and again and say "baby".  He just kind of does his own thing.....then again, he always has. 

Emmitt is like a second mommy for Emory.  He has held him several times, loves on him, helps me with things, etc.  He was holding him a minute ago and Emory started crying and that upset Emmitt so much because he thought he did something wrong.  He has been so sweet, has shared his toys, etc.  It will be interesting to see how long that one lasts =)! 

It's a good week for the boys to go to VBS since this morning from 6 till 9 or 10 was about the only sleep I got last night.  Thankfully, Claude's a morning person, so he can take over at 6:00.  I'm sure after some time passes, we'll get into a routine.  But, for now, we've got a long road ahead of us and are taking it one day at a time.  It is a HUGE help to not be travelling back and forth to the hospital and to have us all under one roof!

Well, that's our update for today!  Sorry if it sounds choppy.....I'm trying to stay awake till midnight so after that I can crash.  Until next time.....

Twila

P.S.
Claude is more technical than I am, so hopefully we can get some pictures posted here on the blog tomorrow.