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)