Sunday, May 30, 2010
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,
Saturday, May 29, 2010
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.
Friday, May 28, 2010
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.
Thursday, May 27, 2010
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!
Wednesday, May 26, 2010
Tuesday, May 25, 2010
Although I'm not a big blogger kind of person, we found it necessary to start this blog in order to keep everyone updated on Emory's condition. I'm going to write out a time line (it will be long)For some of you, it will be repeated information and for others of you, it will all be new. So, I'll start from the beginning.....
Emory Josiah Williams was born on Thursday May 6, 2010 at 9:39 p.m. He weighed 7 pounds and 5 ounces and was 18 inches long - all at 34 weeks gestation. Due to him being born so early, he was taken immediately to the NICU for observation.
On Friday (day 2), we were informed that Emory had a heart condition that entailed 4 issues, one of which is a hole in his heart. We were told that he would have to undergo open heart surgery within the first 6 months of life. In spite of the heart condition, Emory continued to improve in the NICU as well as be moved to the area where babies stay just before going home. Upon our discharge from the hospital (Day 4 - Sunday), we were told that Emory would more than likely be coming home towards the end of the week. Throughout the next week, Emory experienced several changes which caused him to have more meds, tests, etc.
Before I go any further, I would like to clarify that Emory is not in the NICU due to his early delivery. As weird as it may sound, his early arrival may have actually helped us to find out issues early rather than to bring him home and something go wrong.
Around Day 6, the neonatologist began to see a decline in Emory's calcium level. Going on a hunch and years of experience, he ran some tests on Emory. It did come back positive for DiGeorge Syndrome. This syndrome is when the 22nd chromosome does not fully develop and affects Emory's parathyroid gland, thymus gland, t cells, etc. DiGeorge Syndrome also affects muscle develop, which is why we have heart issues to contend with since the heart is a muscle. Our pediatrician gave me an acronym to describe Di George Syndrome (Emory is dealing with those in bold print):
Abnormal facial features
Thymic Aplasia – absence of thymic gland
Hypo calcimia – low calcium level
Even with these things going on, we were still able to hold Emory and to feed him from the bottle as well. However, on Day 7, that came to a stop due to both conditions. Emory then had an umbilical iv inserted for his calcium to be given to him which caused us not to be able to hold him. In addition to that, his heart was working too hard for him to be able to eat from the bottle for every feeding so they reinserted the feeding tube in his nose. This went on for about 5 days and finally on Day 12, they removed the umbilical iv and we were able to hold him. Prior to that, our "touch times" consisted of us rubbing his foot, leg, arm, etc. At this point, they were attempting to feed him 3 times a day from the bottle. It's really a vicious cycle in the fact that Emory has to eat and gain weight in order for them to do the surgery, but his heart condition tires him out just to eat.
Here we are at Day 19 (Tuesday) and thought we were getting ahead yet again, and have had another set back. On Saturday, Sunday, and Monday, the doctors told us that all Emory needed to do in order to go home was to eat all of his feedings from the bottle. He currently is eating from the bottle at every 2:30 and 8:30 hour in a 24 hour period. The other times they feed him from the feeding tube in his nose. He is on the highest calorie formula possible and they continue to increase his feeding amount in order for him to get the maximum amount of calories. He is also on 2 heart medications, sodium chloride (salt), calcium, and 2 antibiotics. That's where we had the set back.
This morning the doctor did blood work to get all of Emory's levels. His white blood count is up and his red blood count is low. So, to treat this, they are giving him iv antibiotics for the white blood count and he will need a blood transfusion for the red blood count. They are doing cultures on the white blood count but are also being proactive in going ahead and starting antibiotics. When the doctor called our house this morning to let us know that, it was very difficult to hear and honestly sent both Claude and I into "shut down" mode. We know that he is in the best care and best place possible, but it is really becoming more and more of a challenge to not have him home and for our other two boys who haven't even seen Emory yet. They are giving him the antibiotics through an iv that is in his scalp. It sticks up out of his head a little more than an inch and then is taped down with a ton of tape so that it won't come loose.....this was VERY HARD for us to see tonight at our touch time.
In the midst of all this, Claude has received his MDIV from Luther Rice (2nd master's degree), both boys have finished up preschool, and Emmitt finished his first season of soccer. We have also been blessed with a great church family and great friends who have brought meals round the clock, provided childcare, etc. If you're wondering something you can do to help, the first and most important thing you can do is pray. Our specific needs are as follows:
- Pray for Emory to eat more and gain weight and strength
- Pray for Emory's blood issue to be taken care of
- Pray for Claude's future employment (His contract at Landmark was not renewed)
- Pray for our physical and emotional strength individually and as a couple
- Pray for Emmitt and Eli to continue to be flexible with our crazy schedule of going to the NICU for touch times
- Pray for all of those who are helping us to be blessed
Beyond prayer, our needs change on a daily (sometimes hourly) basis. So, the best thing to do is call, email, fb, etc.
I've tried to write out all the information in the most simple form possible. So, for all of you out there with a medical degree, if I've explained something the wrong way or misspelled something, I apologize. I'm still learning things I never thought I would have to know and don't fully understand all the details of these two conditions.
Please know that we appreciate everything that has been done for us so far. It does not go unnoticed! Please feel free to call, email, etc. but also realize that in addition to our normal routine, we are trying to go to the hospital twice a day. Therefore, if you call or email and don't get a quick response, please do not be offended. We are simply just very busy and very tired. I will also try to update this blog every couple of days, so feel free to check back. Thank you in advance for your prayers.
Claude L. Williams or Twila Herrod Williams (facebook)