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.

Blessings,

Twila

Dear Friends and Family:

It has been an interesting day here at the Williams household! As usual, Sunday mornings are crazy for us. But, we all managed to get to church, some earlier than others =). Another sweet family from our Sunday school class brought us some lunch and as Claude was walking out with them, they encountered a 4 foot long king snake in the area near our rocking chairs and the boys swingset. For those of you who know Claude and I very well know that to say we are terrified of snakes is an understatement! But, I'm so very proud of my husband who was quick in his thinking and actions and killed the snake. We disposed of the snake, left for the hospital, and stopped at Lowes on the way home for some "Snake Away". Needless to say, Claude scattered it along the edge of the woods/yard very quickly to try and keep the others away.

Our 2:30 visit at the hospital was pretty much status quo. While talking with the nurses, they told us that Emory's red blood count had gone down a little further and also realized that they didn't know where Claude's blood was. In order to trace it we would have to wait till Tuesday due to it being a holiday weekend. Although that was discouraging, we knew our hands were tied and that there was really nothing we could do about it right now. Gremmy went for the 5:30 touch time while we got dinner ready and did some things around the house.

Before going to the 8:30 touch time, Claude and I stopped at the church to pray and partake of the Lord's Supper. This was something special that our church was doing today - the church was going to be open till 10:00 for anyone who wanted to stop by to pray, receive prayer, partake of the Lord's Supper, etc. As we were walking in, another couple there was talking about their testimony of when they walked down a very similar path as we are now. So, they were able to share with us, pray with us, and identify with us. As soon as we were done, we went to the hospital for our touch time, Emory had just finished his bath, and we were able to feed him. After he went through his usual spitting up routine, we were just about to leave when the blood bank called and said they had the blood.

It is about 11:30 p.m. right now and Emory should be receiving his transfusion between midnight and 1:00 a.m. His currenty levels are at 29 and they need for them to go to 40. Our prayer for today is that the transfusion will be successful, that there will be no side effects, and that this will be one more step to us bringing him home. Our understanding is that the blood will help him with his eating as well. So, if you're up this late and are reading this blog around that time, please say a pray for Emory and his blood. If you're not up reading this late, please continue to say a pray for our continued progress towards bringing him home.

One thing that has been special for Claude is to know and speak of the healing that Christ's blood is for us and our prayer is that his blood (Claude's) will be healing for Emory. Please know that we appreciate ALL of the prayers and other gestures and nothing is going unnoticed!

Have a great Memorial Day,

Twila

Good Evening Everyone,

Just wanting to let you know that Emory is about the same today. The are changing some of his meds, in a good way. His weight is up a little bit. They are still waiting on Claude's blood donation to arrive so that Emory can have his transfusion. They increased his bottle feedings to 6 bottles a day and 2 tube feedings a day. So, that is good and even better if he eats them all. Hopefully, we are getting closer to going home.

I had the privilege today of talking and praying with another NICU mom whose baby has been in there for about a week. Since we are almost to 4 weeks of being in the NICU now, I can understand the emotions she is experiencing after just giving birth. Due to privacy issues, I won't give any names. However, if you think of it when you pray for Emory, pray for the other NICU parents and babies as well.

One great surprise today was that Gremmy (my mom) drove in this morning. Claude knew about it ahead of time, but kept it a surprise for the boys and I. Of course, the boys are loving having her here. In addition to having extra help while we go to the hospital, Emory has had an extra touch time with family and has enjoyed being held by his Gremmy. So, that was a nice surprise this morning.

Please keep us in your prayers specifically for Emory to eat more, gain weight, and be able to come home soon. We have a long road ahead of us, but that is our immediate prayer for today. All the rest will have to be taken one day or even one hour at a time.

Take Care,

Twila

Dear Friends and Family:

A short recap of the day.....

Claude did the afternoon touch time and we both went tonight. Emory is doing about the same. Over the course of last night and this afternoon, he messed up several pieces of clothing and his brand new blanket that Mrs. Misty got for him.....so Mommy is already doing laundry for him. This afternoon, he also pulled his feeding tube out and they put another one in.

From what we understand, the blood Claude gave will be at the hospital some time this weekend. It will go to their lab, be placed in the appropriate tubes, labeled, and then Emory will receive his transfusion. They took out the iv that was used for the antibiotics as well. He is still taking 4 feedings a day through the bottle and 4 through the tube. They are lessening the amount of sodium chloride (salt) he receives in a day as well. He has gained some weight and is up to 7 pounds 12 ounces.

Pretty much the same routine right now. Please still keep us in your prayers and especially for little Emory to eat more so he can come home.

Blessings,

Twila

Today has been another one of those long days and very tiring days. We were able to go to the 2:30 and 8:30 "touch times" today. Emory is 3 weeks old today (37 weeks gestation) and sometimes it seems like he has been in the NICU for 3 months =). Emory is still doing good taking his 4 bottle feedings a day. They have increased his calorie amount at each feeding in order to put some weight on him.

After doing a cbc on Tuesday and having the blood issues....the latest report is as follows:

Emory's white blood count is now normal. The cultures came back negative. Although he is not getting antibiotics anymore, they are leaving the iv in his scalp until they know exactly when he will get the blood transfusion.

Claude and I both have the same blood type as Emory. Claude went to the Red Cross yesterday and gave blood for Emory to have for his transfusion. They are currently sending it through a process called "leukoreduction and eradiate". Basically, they are stripping it free of everything except for the red blood cells. That is all Emory needs right now. When Claude's blood is ready (which should be in a couple of days), they will get it to Emory and the process will take a couple of hours for him to receive it all. At least, that's the current plan. Once the blood is in, they will later check his levels, and administer more blood if necessary. Otherwise, if the levels are good, then they are done with that for now.

More than likely, the blood transfusion will take place in a few days. Beyond that, the only thing keeping him from coming home is his eating. Like I said before, he has to eat so many calories in a day in order to gain weight for surgery. Although he weighs enough now for surgery if we had to do it tomorrow, the cardiologist would still like for him to be bigger in weight and age. Emory is currently at Fayette Piedmont Hospital in Fayetteville and will have his open heart surgery done at Eggleston Hospital in Atlanta. The doctors and surgeons at Eggleston prefer for babies to be a certain weight and for their blood counts to be at a certain level before surgery. That is why they are focusing so much on those two things. Once he does come home, we will visit the cardiologist every week until surgery just for them to keep an eye on him and all these factors.

Thank you seems so pointless to say sometimes, but please know that we are very thankful and appreciative to everyone for all the prayers, cards, meals, babysitting, etc. Please keep the prayers coming our way!

In Him,

Twila

Real quick update before I go to the hospital for our 2:30 touch time. Emory and Claude both are "A+" blood types. So, Claude is going to the Red Cross today to give blood. Our prayer is that everything will be good with that visit and that they won't have any issues since Claude was out of the country in January. Will post more later on this evening.

Twila