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/

Update

Be on the lookout for our Christmas newsletter coming soon!

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

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

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

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

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