So this is my first blog. Really don't know how to start, where to start. I guess the best way is to start at the very beginning. Start from the first moment we heard the words
"Cystic Fibrosis"
I had gone in for one of my routine blood draws while your pregnant and when the labs came back they called me to let me know that I had tested positive for the most common CF gene Delta F508. They told me not to be to concerned but I should have my husband tested to see if he was a carrier also. So we did just that and after about 2 weeks I think, he got a phone call telling him that he was not a carrier. So great we went on as normal and then 3 weeks before my due date on March 22, 2008 Carson Wyatt Otterson was born. He was sooo little weighing in at 5 lbs 8oz, after we got him home he started loosing weight and not eating very well at his first check up he was 5 lbs 2oz. We then got a phone call from Carson's pediatrician and they told us that his P.K.U test came back abnormal and we should have him checked out up at Doernbecher Children's Hospital and get a sweat test done. Which after they told us that I started looking things up and soon discovered what CF was. Not something you want to read about after having your first baby, but with Travis not being a carrier of the gene we weren't that worried.
So after the sweat test was done they told us that "No news is good news" and then on April 15th Travis got the phone call that changed our lives forever!!!! He was told that Carson had Cystic Fibrosis and at first Travis really didn't understand how Carson could have CF when he wasn't a carrier? But we would find out later that the Doctors office that did the test for Travis read the test WRONG!!! So then after Travis got the phone call about Carson Travis had to do what I think was the hardest thing he has ever had to do. He had to come home and tell me that our baby boy had CF, that our first born had a deadly genetic disease. And the moment Travis opened the front door I know something was wrong and I really don't remember much after that. I next thing I do remember is going to Doernbechers with my baby and having a Doctor tell me all this stuff about Cf and even from this day I could not tell you everything that came out of that Doctors mouth. All I knew was that this little baby just gave me a whole new out look on life.
So after all that we learned that there was a CF walk coming up on May 17th and we needed to get moving if we where going to get a team put together with there only being a month left until the walk. So by the POWER of family,friends and people we didn't even know, in just a months time we had a team "Team CW" and if memory serves me correctly we brought in just under $13,000.00!! It was amazing how it all happened I still don't know how it all came together. Then sadly almost a month later Carson was hospitalized for 2 weeks with a lung infection and some blockage. And that was an experience but they just keep telling us that after this stay we would be bring home a different baby. And they where right not only did he smile a whole lot more he just looked much healthier.
So then after we got home from the hospital we got right back to our normal lives. I worked a little bit here and there Travis had just gotten a new job right before Carson had been put in the hospital, so he was getting used to that. And then 3 months later just about the end of September very early October we found out that we were going to have our second baby! We were excited and very nervous all at the same time because of there being a 1 in 4 chance that this baby would have CF also. And we were even give the option to find out if this baby had CF before his was even born and we didn't because what was the point we knew we couldn't change it even if he did.
So a week before my due date on May 28th 2009 Brandon Dean Otterson was born! He was a little bigger then Carson weighing in at 6 lbs 10oz and even with the joy of a new baby being born there was still that offal voice in the back of my mind just screaming out wondering if he had CF. After he was born the nurses had taken him over to check him out ( you know the norm ) and as they were looking him over I just remember hearing them say " Do you see a hole? I don't see a hole, OH is that it? " As Travis is listening to this he asks them what they are talking about? And they told us that the Doctor would explain it to us. So the Doc comes in and tells us that Brandon has a Hypospadias, and a Hypospadias is when the opening of the urethra ( pee hole ) is under the penis rather than at its tip and that this the most common birth defects of baby boys and there is a chance of 1 in 125 boys to be born with this. As he is telling us this I'm thinking " Ok sooo this is it, this is something that can be fixed and all we need to make sure of is that he can pee out of it before we leave the hospital. And if he can't then it is just a little more serious " So almost 20 min later he has a wet diaper and we are very happy about that. But then the nurse asked us if he had pooped yet? and of course he hadn't so then that's what we are waiting on. And the day after he was born when he stilled hadn't pooped they started to worry, and when they found out that he could have CF they were really worried. Because newborns with CF can have a Meconium ileus ( Bowel Obstruction ) and so the day after my new baby was born I had to watch as they put a NG tube down his nose and then watch them take my baby off in an ambulance to the NICU. So as we followed the ambulance we just knew that our chances of Brandon having CF just went up.
So they ran the blood test for CF and before they even got the results back I knew that Brandon had CF, I knew the moment a little of the blockage came out and I got a smell of it that's all I needed. I knew that smell, it smelled like Carson's and my heart sank and I just said right there in the NICU "Brandon has CF, he has CF" and of course Travis looked at me and the nurse looked at me and said how do you know. I looked at them and said that poop smells like Carson's and the nurse said " Oh honey it probably smells bad because it's been up there for a while " HAHAHA, really, Okay and this is the same woman that after Brandon's test came back saying that he did have CF she was trying to give him his enzymes through his bottle. So after a two week stay in the NICU we finally got to take our baby home. He didn't have to have surgery he passed everything on his own, but he had to bring home the worse rash on his pour little bottom EVER!!!
But it doesn't stop there for our little Brandon, when he was about 2 months old he started throwing up and I mean straight up Exorcist throwing up. He then started loosing weight and ended up below the 3rd percentile for his age. So he was admitted for failure to thrive.... Failure to thrive what the hell was that it felt more like failure of being a parent. So he was in the hospital for a week and he had to get a NG tube, which is a feeding tube that went down his nose so whatever he didn't drink through his bottle we put down the tube. And before we left the hospital they should use how to place the tube just in case it came out.... CAME OUT!!! what did that mean it can't come out it WONT come out. Well about a week after we were home one morning he pulled it out!! I didn't know what to do, I called the pediatrician and they said they could put it back in but it would most likely cost us our $20 dollar copay. Well I figured I didn't want to pay someone money to do something that I knew how to do but really didn't want to do. So I called my Brother ( Bless his heart ) and he came over and held down his nephew while I quickly put this tube down my sons nose while trying not to look in to Brandon's eyes.
So after having this NG tube in for about a month and a half we got to take it out and finally Brandon got to have his surgery to corrected his Hypospadias and we had to watch and make sure that he ate because the CF doc's told me that if he goes below the 3rd percentile again we really needed to get him a G tube. Well just because my beloved Brandon likes to make his Mommy worry after his surgery he went right below again. So at a clinic visit I got told that he needed one and they would be calling me that following Monday to get him admitted because the said that was the fasted way to get him the G tube surgery and that admission would be about a 2 week stay. Well needless to say we didn't admit him he was about just under a month before he was going to be one and I wanted to see what he would do after we could start giving him whole milk.
Well to try and wrap this post up:
Carson is a very picky eater and by picky I mean won't even try anything. He also just got his vest for his treatments instead of us doing the pats and he is doing a wonderful job. He just got done with his first TOBI treatment along with Cipro a oral antibiotic to try and wipe out the Pseudomonas that he cultured. Right now too we switched him from Creon 12 to Zenpep 10 and he is doing really good with that he has gained just about 2 pounds since he was put on in a month ago. And is now above the 25th percentile for weight!!!
Brandon is a good eater so that makes it frustrating for me to have one that won't try anything and then one that will open his mouth for anything. Brandon too just got his vest for treatments, we still do the pats for him but I do put him on the vest when big brother is on his. We also just switched Brandon from the Creon 12 to the Zenpep 10, we have not gotten them yet but I think they will help him as well. I would also like to report that since we did wait to see what Brandon would do weight wise after he turned 1 and could eat more food and get his whole milk. He also is above the 25th percentile for weight. I even got their nutritionist to pay me a compliment on how well they were doing. HAHA just try an corner me again and tell me my son NEEDS something when your not with him 24/7.
Well I hope I got most of what has happened in the last two years on this roller coaster called CF. So I'm off to my next challenge with "A Day with Double Trouble"
