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.



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!



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,


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.....


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

Saturday, June 5, 2010

Dear Friends and Family:

I didn't realize that it had been so many days since my last blog update! Our days are just running together lately. We started the week off with some good news on Monday that they were working towards sending Emory home the first of next week. Our neonatologist said that he would have to meet with the cardiologist on Friday and if the feeding issue was the only thing left, they could send Emory home with the feeding tube. So, although we were excited to hear about improvement, we still didn't want to get our hopes up. And, although it is a simple thing to do for many, the thought of inserting a feeding tube into my child was very overwhelming!

Gremmy left Wednesday afternoon and boy was she a huge help while she was here! It made things so easy to just be able to walk out of the house for the hospital and leave the boys with her. While she was here, she used her "spare time" (ha,ha) to make a blanket for Emory. I'll post pics one day of all these things.

After her leaving, I went to the touch time at 3:00 and the nurse started going over discharge information with me and let me know we needed to start coming early for training on the feeding tube. Without going into all the details, on Wednesday we brought home with us the pump for the feeding tube and on Thursday, Claude inserted the feeding tube into Emory. Mind you, the discharge process for an infant from the NICU is a long one and involves several items to check off a list! This was just one of many things from the list. I was going to go up early today, but when I called ahead of time to make sure it was still ok, Emory's nurse told me that the neonatologist had taken the tube completely out and planned on leaving it out because of how good Emory was eating. I was so thrilled I was in tears because I knew that meant Emory was closer to coming home.

The main thing left that was a time sensitive issue was that I needed to get his prescriptions filled and take up to the NICU. I have to use a different pharmacy for his prescriptions due to them needing to be compounded and it was either get them done by tomorrow afternoon or wait till Monday. Needless to say, I wanted to get them filled as soon as possible.

So, when I went up to the hospital tonight for his 9:00 feeding, he ate his entire bottle without a tube. He passed his hearing test this afternoon with 100%. I dropped off his meds from the pharmacy with the nurse for them to verify the accuracy. He should be circumcised within the next 24 hours. I'll take the car seat up tomorrow for them to test him in it (he has to sit in it for 1.5 hours without having any breathing problems). They want to make sure that he doesn't lose any weight over the next 48 hours and that he still continues to eat good during that time as well. If those two things are good, we should be able to bring him home Sunday night or Monday morning.

The neonatologist has written orders that within two weeks after discharge, we will need to see our pediatrician, the cardiologist, the endocrenologist, and the geneticist.....all of which are a 30 - 45 minute drive from our house. The fun is just beginning =)! Emory will also get his first round of shots in two weeks. From what we understand, we will see the cardiologist every 1-2 weeks and they will watch his progress with his weight gain and his heart. All of that information will determine when he has his open heart surgery.

We will definitely keep the blog going with updates after he comes home and especially around the time of his surgery. We are so thankful that Claude was able to give blood and we both hope to give blood for Emory to have for after his surgery.

We'd also like to take this time to say a big "Thank You" to everyone who has helped with babysitting, sent cards in the mail, given gift cards to restaurants and other stores, brought meals or groceries by, mowed our lawn, etc. It has been a blessing beyond belief! For me to not have to think about what to cook for dinner has helped free us up to go to the hospital and that has been a blessing. Thank you doesn't seem to be enough but please know it is greatly appreciated!

One last thing.....I'm trying to add a caption or link for anyone interested to be able to subscribe to our blog so that when the blog is updated, they can receive an update through their email.  But, I'm slow at this computer thing sometimes.  So, for those of you out there with so much more knowledge than I have, please let me know if this appears on the blog post for tonight.  Or, please let me know how to go about doing this.  I would appreciate it.  I trust you all have a good weekend and I'll update again soon.