Long time no blog

Sorry it has been a while since i have updated everyone. The boys caught their first cold of the season when the cold front came through week before last and i was only averaging 4-5 hours of sleep a night. Needless to say, sleep was more important. From breathing treatments, to meds, to the ever so fun "hose the nose" it has been a busy two weeks. They did get approved for another round of RSV shots and they will get them to atleast december. After that, depends on our medical coverage since they are $2400 a month per baby. You always wonder, why so expensive, they are suppose to help them, do they really need that much money! Anyway, enough of the soap box - here's the good stuff...






Riley did get his glasses and does not like wearing them very much. You can tell he needs them but wearing them is a different story but we are working on it daily. Riley weighs 17 lb 5 oz now and is slowing gaining weight. We have been trying to introduce new foods but for him it is a no go. We all know it takes time for them to learn to like something new but any change in Riley's daily eating routing throws him for a loop and he is moody the remainder of the day. He is beginning to pull up on everything and standing on his own but still loses his balance and wham-o that is if i don't catch him first and show him how to get down. He loves to crawl everywhere and his new favorite toy is his leapfrog Musical Table. Here is Riley sporting his new glasses:










Riley on his John Deere.





Carter has been doing very well. Before the cold, I had him fully weaned off of O2 for about 2 weeks then the cold hit and i had to put him back on but we are making progress. He has become such a happy baby and back to the Carter I remember before all the medical issues with the reflux, NG tube and Gbutton. We have made some progress with Carter. Just the other day, he actually let me massage his gums with my finger. Now this is a major hurdle. I can't remember the last time he has let me do this not without gaging. We did it all with no gaging no nothing. So i thought, well if he will let me do this why not try something else. I actually got him to take 5 swallows of pedialyte from the honey bear bottle with not gaging. We wanted to throw a party we were so excited. This is such a major milestone for him and hope we continue on this path. Carter weighs 18 lb 13 oz and not gaining as much weight as i would like but we have been battling, gbutton infections, colds and weaning on O2 which all burn calories so we wait a little longer to see what he does once all of this clears up. Here is a picture of Carter on his new John Deere.






For those of you who don't know October 9, 2007 was their original due date. I think back to this day and always wish i could have been able to carry them longer but it was not possible. So to Carter, Riley and our angel Lanny - Happy Original Birthday!

Before the cold front hit, I took the boys out in their wagon and wheeled them around the driveway and here is pic of them in the wagon.

Can I have a menu please...

It is always and adventure taking the kids out of their element and into public. We do not do this very often. They had their first taste of a restaurant on June 22nd and it went really well. I expected to have two screaming and crying children by the time we left but to my surprise no major meltdowns.

Well, today is another one of those adventures. We had to go to Ft. Worth again today for a routine eye appointment - yippie! Since i had scheduled the appt over six months ago it is a little hard to change the time of the appt as you get closer to the date. I didn't even think that Riley would be eating normally at the time we made the appt so that means stopping and eating at a restaurant so Riley, Kevin and I all could eat. It takes about an 1 hr 1/2 to get the appt in Ft. Worth so we had to allot extra time for Riley to eat.
Although Riley only prefers baby food at the moment, we were looking at the menu here and he was thinking "where's my menu?"



We decided to eat at Chili's since it is more kid friendly than most and our table was in a corner which was nice. Not many onlookers. Riley decided that chewing on the end of the table was so much more fun than eating so we tried not to fight him too much, he would start screaming when we did. All I could think about were the germs - YUK! So lunch went pretty well and Carter did fine until our food came and then he decided that spitting up would be so much fun. We only have the cheapy single stroller that we got for free as we have always used the double stroller until now. So now Carter has now spit up all over himself and the stroller and Kevin is trying to feed Riley .... and our food? Getting colder by the minute. We finally all finish and get moving to get to our appt on time.

Here is Riley tasting the table



Carter chillin' in the stroller.





The appt went as well as expected. Carter is nearsighted but not to the point that he requires glasses as of yet. They did tell us that he can only see clearly for about 3 feet and then it gets fuzzy from there. So we see the Dr. again for Carter in one year and fully expect to purchase a new set of spectacles for him at that time.

Riley on the other hand wins the prize. He gets his new pair of spectacles now. I really don't know how well this is going to go over and how many pairs of glasses he will break but I am sure I will keep a count. I could barely keep the nasal cannula on him and that was taped to his face. I don't know how in the world I will keep the glasses on him. Riley is nearsighted (more than mom actually) which we had expected due to his eye surgery that he had back last Sept. The dr. had already prepared us for this along with the fact the surgery itself did take away some of his peripheral vision. Not a whole lot but he does not have all that normal people should.

Overall the boys are doing well, they are both cutting their two top teeth at the moment and it makes for fun times around here.


On a funnier note.. people who live around the DFW area know that you can see the funniest things. We were driving on Vickery to go to downtown and we were following an SUV that looked like it had a lot of stuff in the back. Then, all of a sudden, we saw a rat jump from the window on to the pavement and scurry across the road. We looked at each other and went "Did you just see that?" It was probably the funniest thing we saw all day. Although that was a riot, I don't think it topped the time we were driving on Rosedale going to see the boys when they were in the NICU. We actually saw a lady brushing her teething while driving down the road. I couldn't believe it. You just don't see these kind of things where we live and I just couldn't stop laughing. We just had to assume she was late for her next appointment. At least she brushed her teeth. The things you see while driving - go figure.

And the Doc said ....

Dr. Miller our fabulous pediatric surgeon who has been with us since the beginning said Riley looks great at this appointment on Friday. He wants to see how he looks in one year. What is he looking at you may ask? Well, he performed 3 of Riley's 5 surgeries - the perforated bowel (ileal perforation), the reanastomosis, and bi-lateral hernia repair and circumcision (decided to go ahead and do this while he was under anesthesia for the hernia repair - Carter was not as lucky.). He is actually making sure the muscle wall is healing properly since he was so young when he had the surgeries. When you are an adult and have surgery, they sew you up and you are usually good to go. But with babies who are under 5 lbs there is not much there to begin with so the healing takes longer and holes may develop due to stretching and growing therefore requiring another surgery. There is one area that he is still watching but it is nothing that we have to act on right now. It is a wait, watch and see how it looks in one year. At this point, there is no hole that he can detect.





Dr. Miller is all in the family and also performed Carter's Gbutton surgery. When the GI doc asked us if we had a surgeon in mind to perform Carter's button surgery - we both said Dr. Miller. So since Carter was with us at the appt, he did give a quick look at the button and said it looks great. It is not very often we get a two for one deal. There is no need for a follow up with Miller unless the button needs to be changed out or taken out all together - that may be a while since Carter has to begin eating before that can happen.



We can't thank Dr. Miller enough for all he has done for us. I remember him talking with us and telling us about Riley's ileal perforation and not knowing what else may be there when he gets in (i.e. how much of the bowel he may have to remove). We had barely recovered from the PDA ligation and they were going back in and try to save him. If it had not been for our wonderful neonatologist, Riley might not be here today. He happened to see something on an xray and took action immediately. Took look back on that day now it seems like a dream but then you see the scar on Riley's belly and realize it did happen, he did survive and how fortunate we are.

The Beginning..........

Hello everyone and welcome to the Ice Boys Blog. It seems that the old way of updating everyone was just not working so we decided to keep everyone informed as to the happenings of the boys online. Here is a picture i just took the other day. Carter and Riley really don't cooperate that well when it comes time to take a pic.

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.