Family Blog

October 2005

October 11, CJ was once again in the hospital for a blood transfusion,an endoscopy and a study to check his gut. October 12th, CJ slept pretty well last night. We woke up early for the study. CJ had to breathe into a chamber at least 6 times over a 4 hour period. He went down early for the endoscopy. It was successful. He got his 14th blood transfusion. We got news from our nursing agency that our nurse would not be returning and that we would be getting a new one. Here we go again, another person that we all have to adjust to. October 13th, CJ and I were surprised with a visit from my mom. We were so very happy to see her. Right before that great news, I was told by a nurse that CJ had an infection in his central line. I have now come to realize that the Lord will truly not put more on you than you can bear. October 14th, CJ was really beginning to look sick. Usually he just smiles through everything and you don't even know that he is ill. He is cranky, irritable and just wants his little ducky pacifier and his Baby Einstein. October 15th around 3:00am, CJ went on oxygen because his breathing was very labored. His left eye was swollen and his face was puffier than usual. He was given an X-ray and there was fluid on his lungs. OMG, my son is going through that same thing that his mother is going through. I suffer from congestive heart failure. CJ was given a lasix treatment. (This is a med. that pulls excess fluid off of your body) CJ suffered with this breathing until around 8:30am. While we were at the hospital dealing with all of this, daddy called to say that his back went out on him. He has a serious back condition and it gets worse with stress. October 16th, daddy came to relieve me at the hospital. I went home slept and came back to be with CJ. CJ was on his third lasix treatment by this time. October 17th, CJ woke up smiling like his old self. We were scheduled for an echo cardiogram (Checking the functions of the heart) Oct. 18th, everything came back negative. CJ was in a pretty great mood all day. Later on this night, I noticed a huge bump on the back of my leg. I was very nauseous and my stomach was very upset. I called daddy and asked him to come and get me because my body had just had enough. I cried before I left the hospital, when daddy picked me up and when I got home. I did not want to leave CJ at the hospital alone. The nurses re-assured me that CJ would be just fine. Oct. 19th, CJ decided to pull off his colostomy bag and he pulled his ng tube out. Oct. 21st, I returned back to the hospital to a smiling CJ and we played non-stop for 30 minutes. He went right to sleep afterwards. I know that he knew his mommy was back. Oct. 23rd, I returned home to prepare to take care of Victor. CJ is doing pretty well. His infection is clearing up and we hope that he will be released on Friday. Oct. 24th, CJ is doing well, daddy visits him during his lunch hour and I have been bringing Victor with me to see his brother every other day. Oct.26th, Victor and I went to see his brother and found out that he was in baby time. (This is an hours worth of stimulation, fun and lots of bubbles. We all had so much fun. Victor met a lot of new friends and had a chance to just run free in the rumper room. Oct. 27th, daddy called to check up on CJ and found out that his central line was busted. WE FREAKED OUT! Why didn't they call us last night? Daddy went to the hospital immediately and I got Victor together and we went to the hospital as well. CJ was just fine, sitting in the bed watching "Baby Einsten". We waited until surgery came and patched up his central line. We were so very thankful that he did not have to get another surgery. Daddy's job sent him back to the hospital to care for CJ. They have been such a very supportive group of people. Its great to know that someone understands all that my family has gone through. (Thanks so very much Alexis, Desiree, Angela and all of Northrop Grumman). Because CJ could not receive his last antibiotic on time, he will remain in the hospital until some time next week. Oct. 29th we received a call from the hospital.(We thought that we were in for another bad blow) It was one of CJ's' favorite nurses.(Beth) Christina who is his adoptive son during his stay this time had purchased CJ a Halloween costume. It was "Dimpsey" a costume from the Teletubbies. We were so very happy that is was good news. We were on our way to the hospital to see our little boy all dressed up. When we got there we almost lost it seeing him in his costume. Little CJ was so very cute. He snatched his ng tube out so the nurses kept it out so that we could see him. We were so very happy to take some pictures with him with nothing attached to his face. Victor was also given a costume "Lala". His costume was a bit too big but at least he was playing along with his brother. Christina took CJ to a Halloween party to celebrate. Christina said she got nothing but ooh's and awwww's seeing CJ all dressed up. I was so very thankful to these nurses for making our day. Oct. 30th, I went to visit CJ and we had such a great time. Christina was playing with him when I got there. We went to the garden to enjoy the beautiful day. After two hours, he fell asleep in my arms. We are hoping that he will be released on tomorrow.

November 05

CJ was released from the hospital November 1,with great news. Daddy asked that the swallowing study be repeated. This lets us know if CJ is still aspirating. As you all know he has not been able to take anything by mouth in about 4 months. No bottles, food or meds. WELL! The study came out great. CJ is now able to utilize his mouth again. We are waiting to see if and when the Drs. will allow him to try again. I almost cried when he swallowed down the puried bananas with the yucky barrium.We take every day as it comes and this is an awesome start to the new month. CJ is doing very well at home. He settled right in. Victor on the other hand was so excited to see his brother that he made noise all night. He just would not keep a consistent sleep pattern. Daddy and I are doing well and are continuing to uplift one another during this time. We don't mean to take sides but the family wants to thank all the nurses and staff at Egleston. An extra special thanks to Beth, Christina, Mary, Dixie, Shakina, Deniece, Anna and Debbie. Thanks Kim and Natalya for your ears and your shoulders. I would not have been able to make it without your support. November 4th, CJ had a pretty hard time settling into home life again. He was cranky and just wanted me and daddy to hold him. I have not had a nurse since he came home from the hospital so it has been really hard to spend my every waking moment holding him or Victor. If i'm not drawing up meds, I am changing and feeding Victor, cleaning the kitchen, washing the clothes and just trying to keep myself from falling apart. I take all of this in stride and consider it to be a true blessing from God to see my babies with each other. Nov. 5th, CJ and Victor spend most of the day fighting for my attention. Today Victor had a cry fest because he saw me pick CJ up and give him some quality play time. He quickly realized that I was going to spend this time with CJ and he smiled at me and started playing with his toys again. It is so very hard giving time to both babies but I make every day a challenge to do so. CJ is doing pretty well, I think he is trying to catch up with his sleep. He gets aggravated when I try to make him stand and move around. He eventualy comes around when it becomes one on one with his mommy. I look forward to his PT appt. on Tuesday with Tessa. Nov. 7th, Joanns cleaning crew came over to clean the apartment for free. I was so very happy to see all of them. They were so professional and awesome. They cleaned the ceilings, got all the dust and they did things in my home that I did not expect. They cleaned my closet, made my bathroom clean enough to eat off of the floors. They cleaned my stove, stacked up all of my junk everywhere. They cleaned the floors better than a carpet cleaner. I commend this entire crew for all of their hard work. They did all of this in less than 3 hours. This was such a breathe of fresh air. Now I can get a lot of things done that I used to just worry about and hope that they would get done. Nov. 8th, I woke up in the morning to notice that CJ had pulled out his NG tube. I am at home by myself so I gave him a long break and decided to ask the nurse that draws his blood to hold him while I put in another tube. Both babies seem to be doing pretty well. Nov. 9th, I woke up again to CJ with his NG tube beside him. I have no other choice but to put the velcro restraints on his arms. He is determined to keep that tube out of his nose. Nov. 10th, The babies are now 10 months old. WOW! Time really goes by fast. I hear that from so many people so much that you can see what they were saying. Nov. 11th, CJ had a follow-up Drs appointment with Dr. Cole. CJ now weighs 17pds 8 ounces. He is getting fatter but not growing in length. His tpn is being adjusted to help him out. His feeds are now for 20 hours instead of 22. This gives him more time to be unattached to a pump. We are able to really play with him more during that time. Daddy figured out how to put booties on his feet and tape them to keep him from pulling out his ng tube. CJ seems to be really enjoying his sponge baths now. He used to cry when water touched his little body. Now he just whines until you give him his body massage with baby oil. Victor is doing well and is really enjoying his little brother. They both get a big kick out of kissing each other. I cannot wait until they are able to really play with each other. CJ is laughing a lot more and trying of course to talk to everyone. Nov. 11th, CJ is not feeling well. He is teething and is quite irritable. Nov. 13th, CJ was in a pretty good mood. He and Victor have been playing together all day. Nov. 14th, CJ woke up throwing up. I adjusted his NG tube because I think that this has caused him to be very gassy and irritable. I have been struggling to let others know about the site. I have been on a couple of sites to bring awareness to the site. On the negative side, I have received emails and blogs from people who do not know my family at all. They have stated that all that we have been through can't be real. They are calling the site a scam. I feel that this is truly funny because the average person could not go through what this family has gone through. Please rest assured all of you out there. Nov. 15th, Daddy and I went through the weekend really stressed. CJ has not been absorbing his iron medicine. We have seen his colostomy go from firm and yellow to watery and black. He has been throwing up quite a bit and we have had to really keep an eye on him. Even though he has been going through this, he still manages to keep a smile on his face and remains in a good mood. Nov. 16th, CJ has been pretty sick the last few days. He has been throwing up a lot and his ostomy output over a few days has been the color of the rainbow. I received more calls this week from friends, old nurses, family and long lost relatives. I know that God is walking with me in all of this. I always say that there is a reason why we go through some things. His ostomy output is beginning to worry me a little so I asked Daddy to call the Dr. We were tempted to go back to the hospital but looked at his symptoms and began to pray. Nov. 17th, we were both up pretty much all night with the little man CJ. He was so uncomfortable. We did all that we could to finally calm him. Nov. 18th, CJ and I have to go to Dr. Coles office. We spend quite a bit of time at the office. We usually get out of there within two hours.(That is if we are lucky) To make a long story short I have two positive things to share with all of you great friends and family out there.*CJ's Great Grandma of 90 years old will be visiting the babies on this Monday for Thanksgiving. Their grandfather (Maurices' Dad) will be taging along. * Dr. Cole told me to call Dr. Parker (CJ's surgeon) to have him re-evaluated for surgery in January. This is to re-connect CJ so that he will have no attachments. We may not have to wait until the middle of next year for his surgery. Nov. 19th, When will the constant stress end? I went to hook CJ up to his TPN and while I was flushing his central line with saline, I noticed that it was leaking. Daddy took CJ back to the hospital emergency. After patching up his line, there was still no blood return. As of 11:30 pm tonight, CJ is officially being checked into the hospital. They will have to take out his central line for the second time and be replaced. Yes, this is surgery number 2 for a new central line and surgery number 5 for little CJ. Nov. 20th, CJ went in for surgery around 8:30am, Daddy stayed at the hospital while I kept Victor at home. Everything went really well. CJ had a mid grade fever so he was not released to go back home. He will be watched all night. Nov. 21st, It was a really busy day for all of us. Daddy picked up Great grandma and Grandaddy Barnes from the airport. The flight was delayed by 2 1/2 hours. After the long wait at the airport, daddy went to the hospital to pick up CJ. Granddaddy Barnes went to assist. When we were all together at home it seemed like a dream. Victor cried because we think that he was surprised that his daddy looked like his relatives. It kinda freaked him out. CJ was happy go lucky as usual and just wanted someone to hold him. Nov. 22nd, Granddaddy and Great Nanna Barnes held CJ and Victor all day. Victor warmed right up to grand dad and his 90 year old great grandma. They both pitched right in to help me through my long hard day with the babies. My mother and dad came to assist as well. I cooked dinner and we started to take pics of everyone. The next few days consisted of lots of love and kisses. Nov. 24th, we all sat down for Thanksgiving dinner while the babies played with each other. Victor ate yams and dressing for the first time. He did not want granddaddy Barnes to put him down. We had a wonderful Thanksgiving. Nov. 25th, Great Nanna and Grandaddy went back to Jersey and Philadelphia. We miss them both already. Nov. 26th, my mother and dad left to go back home to Columbus, GA. The babies are getting some much needed sleep. They barely slept because they had so many faces to look at and so many people to play with.

December2005

December 5th, CJ went to see a speech therapist. She tried feeding him and he freaked out. He is just not use to having anything in his mouth. We were so looking forward to him feeding with the bottle and the spoon. Dec. 7th, I fed him some bananas with my finger. CJ really liked the fruit. I will continue doing this until he will get used to the spoon. Dec. 8th, Susan, the nurse that draws his labs noticed that the cuff from his central line was showing. Susan called the Dr. immediately. Daddy rushed home and took CJ to Egleston. CJ was released to go back for surgery on Thursday. We received a phone call stating that we needed to schedule the surgery for Friday so that Dr. Parker (CJs surgeon) could do the surgery. Keep us in your prayers. He will be back in surgery on tomorrow to replace his central line. Dec. 8th, My mother, dad and grandmother came to help out while CJ went through another surgery. I was so very happy to know that my mom and dad were so gracious to give of themselves to help us out. Maurice and I are under so very much stress dealing with little CJ. Dec. 9th, Maurice and I got up early and took CJ to Egleston for his surgery. Everything seemed to take so very long. CJ was of course calm as ever until he saw the nurse. We did everything to keep him calm. Daddy remembered to bring his favorite DVD (Baby Einstein's Baby Mozart) We went home after the surgery to let CJ rest. He did pretty well most of the evening. Dec. 10th, CJ was in a much better mood. He began to smile and act like his old self. Dec. 11th, my mom, dad and grandmother left to go back to Columbus. After a few hours I know that CJ was better because CJ and Victor had what I call a "spit fest". They spit making bubbles and sounds from their little lips. Daddy fit right in with the babies. Dec. 16th, CJ had an appt. with Dr. Cole. He was very happy with CJs progress. CJs' white blood cell count was elevated to he had to get a rectal temp. Of course you know that he hated this. He did not have a fever at this time. The day went pretty well. CJ slept pretty well all night. Dec. 17th, Daddy and I spent the day enjoying the babies. It was busy all day long. After we got the two boys to bed, I went to sleep in the bedroom while daddy slept with the boys. Dec. 18th, Daddy and I got up and noticed that CJ had a fever. I checked his temperature at least four more times within an hour and it was getting higher. CJ was throwing up a lot more through the night. We decided to call the Dr. After the call of course we were off to the hospital. I had to take CJ to the hospital because daddy had done it the last 3 or 4 times. I just could not handle the walk in the hospital and all of the lifting that is envolved. When we arrived at the hospital, CJ and I sat down and just started to play and watch tv. The hospital was so very busy. There were babies all around us coughing and crying. CJ made me feel proud because he was being a better sport than most of the kids in the hospital. When we finally got back into the emergency room, We sat there for about 30 minutes to see a Dr. After this a nurse came in to hook him up immediately to antibiotics. This seems to be the norm when a baby has a central line. If an infection spreads in his little body, it could go directly to his heart and take his life. Modern medicine has its bad and good points. Can't live with it Can't live without it. During the antibiotics, we went to xray to start the process of looking for infection and to figure out if it was in or on top of his central line or within his little body. They make sure that they also look for pneumonia. After another 2 hours of waiting we were admitted to the hospital. CJ slept during this two hours. I had the nurse turn off the lights so that it was dark and he went right to sleep. Once we got CJ to a room, I felt a bit more comfortable when a long time nurse "Renee" (27 years) had little CJ. I was so very happy to see one of his favorite nurses asst. "Shannon" also. Dec. 19th, I went to see CJ at the hospital. He was so very excited to see me. I could not pick him up because he was hooked up to so many things. I was able to hold him in my arms and kiss and cuddle him for a good while. We watched Baby Einstein and cartoons most of the time. We played with a few toys and had fun. I gave him a sponge bath and a lotion massage. Dec. 20th, there was no infection growing from his central line. Dec. 21st, still no infection, but a spot on the xray showed that there was possibly pnemonia present. I went to the hospital and stayed until I saw Dr. Cole. Dr. Cole stated that CJ would probably be in the hospital for Xmas because he did not want to send him home on antibiotics. Dec. 22nd, we received a phone call from the hospital that CJ was being released from the hospital on today. I cried like a little baby when I heard the news. So many people were praying that CJ be released in time for his very first Xmas. When we picked him up he was so full of joy to see me and daddy come to get him. This was a rare occassion for us to be together to get him. It was all possible because my mom had made it in town for the holidays. We brought CJ home and as soon as Victor saw him, he gave him a really big kiss. We are so happy that the family will be together for their very first Xmas. CJ of course was released from the hospital on Dec. 22nd. (Thanks so very much Egleston and the staff of Dr. Coles office)We were all so very happy. The joy in our hearts was just unbelievable. Dec. 23rd.we started to get ready for Xmas and grandma broke her ankle. Yes she broke her ankle trying to keep CJ from choking. He gags a lot and she thought that he was going to choke. Well this was just another thing in our lives. We had to make grandma sit down because she just kept going even though she had crutches and a full length cast on her leg. Maurice and I went out and purchased a few things for the boys and later that night started putting gifts under the tree. CJ was very happy to see the lights. Victor really could care less until he was able to touch the tree. Dec. 25th, the babies woke up pretty early and we began opening presents. Daddy cooked breakfast the entire season of Xmas. We were so very proud of him. Daddy is a great cook so we were all happy. Xmas was so special to us since it was the twins first one.