For those of you just joining us - Kevin and I were blessed with triplets on June 23, 2007 at 2:21 pm. They were born at 24 weeks and 4 days due to complications. Carter Ray was born first at 1 lb 6 oz. and 12 inches, Lanny Jay was born second at 1 lb 8.3 oz and 12 1/4 inches and Riley Lee was third at 1 lb. 7.8 oz and 12 1/4 inches. Lanny survived 24 days and due to many complications arising from his birth and he passed away on July 17, 2007.
Carter spent 135 days in the NICU at Harris Ft. Worth and thanks to the care of our doctors and nurses he was able to come home November 5, 2007. He was born with severe chronic lung disease and a grade II IVH. He had only one surgery during his stay at the NICU at 6 days old for a PDA ligation. Carter was on a ventilator for 3 months due to the condition of his lungs. He has several pneumothorax's that required IVs to be inserted in his chest to let the air escape. The two months of his life were very critical and many days all we could do was pray that he would be strong enough to survive. Carter came home with a lot of equipment - apnea monitor, pulse ox, O2 concentrator and portable oxygen. He is no longer required to wear his apnea monitor which he wore until August 7, 2008. Carter has been off of oxygen during the day since July 4th but still relies on O2 at night. We are in the process of weaning him from O2 completely.Carter had another surgery on May 15, 2008 for his insertion of a PEG aka Gbutton. He was hospitalized in January for failure to thrive. He was having some reflux issues and it became apparent to him that it hurt so therefore he decided that taking a bottle was not fun anymore. He was losing weight and on the verge of dehydration and was only taking pedialyte when we entered the GI docs office. Carter had an NG tube placed and was in the hospital for about 5 days. He was suppose to have surgery a month later. That didn't happen. He was hospitalized again for RSV a month later since his O2 requirement climbed up to over 1 liter (and yes he was getting the synagis shots) which delayed any surgical procedure for 6 weeks. Just as we got to the 6 week mark, the following week he came down with a ear infection and his O2 requirements went back up, required steriod medication again, nebulizer treatments etc. (keep in mind - what one twin gets usually the other does as well!!!) So again ... delay. It was very agonizing for us and painful for Carter - switching out the NG tube on a weekly basis. This meant using unisolve to remove all the tape that held the tube and oxygen tubing in place and reapply. By the time this was all done, I had it down to a science. On two occasions, I had to replace the NG tube myself without our home health nurse - what an ordeal.
Finally, Carter had surgery and all is well with the button at this point. Carter's only nutrition comes from Elecare 30 cal. formula. Due to reflux issues and prior CLD issues his intake is well monitored and limited - only receiving 750ml in a 24 hour period with about 390 of that over 10 hours at night. So we have to monitor his very closely and we still keep his pulse ox on him at night to monitor for any issues. We do supplement him with pedialyte to keep him hydrated due to the concentration of the formula.
Carter receives many services from ECI and we do have a Dietician coming out every two weeks to help monitor his weight. We keep a close eye on it and as soon as he stops gaining weight, we re-evaluate and make any changes in his intake to make sure he continues to grow. He refuses to take anything by mouth so we do daily therapy to get his use to things close to his mouth but nothing in it. With Carter, you push to hard he pushes back and then we start all over in a couple of days. He will someday do more on is own terms and that seems to be the way he prefers it.
Carter currently weighs 18 lbs and is 28 inches long. He is not very active since he does not like to roll around so we do some therapy each day sitting, rolling on the ball to get him to use his arms and play with toys. We do seem to do better when he is watching Wow Wow Wubbzy or Mickey Mouse Clubhouse while we are making him work. He would lay or sit in his bouncy chair all day if I would let him. He doesn't say to much but loves to babble and we always know when he is in a good mood when he babbles. Carter loves to snuggle when he is in the mood and always love to hold on tight - don't you just love it!
Here is a recent picture of Carter taken just the other day.
Riley, where can I possible begin about Riley....
Riley was in the NICU for 120 days. He also had surgery at 6 days old for PDA ligation (actually all 3 had the surgery the same day ... the day after I was discharged from the hospital .... thank goodness for painkillers). Three days later, our neonatologist called early that morning saying that we needed to get up to hospital asap as Riley required immediate surgery. He had a perforated bowel and they needed to go in and repair it. Our surgeon, the best in the world in our book, said that it was in the best place possible and he should have no problems from it once it is repaired. So for 7 weeks Riley had a ostomy bag taped to his stomach while the ostomy itself healed and at that point he had another surgery to put everything back together.Riley was also born with chronic lung disease and was on the ventilator for about 2 1/2 months. He was on and off the vent a little more than Carter due to the surgeries that he had to have but always came off rather quickly after the inital wean. In September, it was determined that Riley needed ROP surgery to correct his eyes. Many preemies experience this since their eyes are not fully developed when they are born and this surgery saves his eyes and keeps his retina from detaching causing blindness. Riley did have to have this surgery for both eyes. In the days following his recovery I was holding him one day and he turned blue and seemed to be having some complications and at the time we were not for sure what. They initially thought that it was his bowels. In a way it was but it was due to a hernia near the scrotum. A few days prior to surgery, they determined that Riley had a bi-lateral hernia (one on each side). At least they found out before the surgery took place. My poor baby was not even 4 months old and has had 5 surgeries....what a way to start.
We were so excited when we got the news that Riley was coming home. October 20th was the day we had been waiting for and terrified about at the same time. Riley also came home with lots of equipment...apnea monitor, pulse ox, O2 concentrator and portable oxygen tanks. As of August 7, 2008 he no longer needed the apnea monitor, pulse ox or O2. We had officially weaned him as of July 4th with O2 a couple of times in July. So when we went for a check up August to the pulmonologist, she said he is done with O2. So we turned in all the equipment except for a portable tank for just in case since we did have RSV last February at the same time Carter did but we had steriods and nebs on hand since Carter was already hospitalized and we had grandma watching him. He also got a double ear infection a week before Carter did and his strain was resistant to the first does of antibiotic - yippie. So it was a busy 1st half of the year and we are hoping things stay calm throughout the winter season.
Riley also receives ECI services for PT and Dietary. They come and weigh him every two weeks as well to make sure we are providing him with the proper nutrition to help him grow. He is army crawling everywhere and doing some weight bearing on his legs but not crawling on all fours yet - he soon will be though. Riley is currently eating 2nd foods and since he lost weight during a two week time period we are having to increase some of his foods as far as adding fat and starches. He has been off formula since May and just loves the milk. We have therapy honey bear bottles that we purchased for Carter to help him start to drink by mouth (which has not been very successful) and Riley's OT suggested that we try him on it as well and skip the sippy cup altogether. Well on August 16, he started drinking from the straw by himself. He still will not drink from the gerber straw cups but he will drink from the honey bear except when it is time for his milk which he still prefers in the bottle. He seems to be doing very well and wanting to do more just can't figure out how to do it yet but he will. He is kinda of like Carter, let me figure it out on my own please, and thank you. Riley is very head strong and to him it is all about Riley. He wants to be entertained all the time and if you are paying attention to Carter and not him he will voice his opinion about it very loudly.
Riley currently weighs 16 lbs and 2 oz and is 26 3/4 inches long. He is quite a bit smaller than Carter currently but he will catch up. Riley does talk as well and his favorite words right now are momma and dad
Here is a recent picture of Riley....
I apologize for such a long post, but wanted to start a little from the beginning and work our way forward. Thanks for reading and enjoy the blog.
