ENT Visit

     On Friday Jake and I took Jacelyn to Primary Children's Hospital to meet with the ENT Specialist.  I was really nervous cause this was the day we would find out what the plan would be over the next few months.  I already knew that surgery was a must but in the back of my mind I was hoping that it would close on it's own and it wouldn't be required.  Wishful thinking on my part I guess.

     We get there and the weigh her and she is almost 8.5 pounds and everything looks good.  Dr. Meier comes in and takes a look at her neck and says, "Yep its a Branchial Cleft Fistula."  So we now have a confirmed diagnoses. Now what is it and what do we do about it.  He tells us that if forms between the 2 week and 6 week of development and for some reason it doesn't close off.  It's a tube that leads from the outside to the inside of the throat up next to the tonsils in most cases.  It looks almost like a worm and can tend to be long.  Sometimes, although rare, they can go down into the chest and wrap around the heart.  He tells us until the go in they really won't know which way it goes, but if it goes down he stops the surgery and gets another surgeon cause it then requires a whole different kind of surgery.  The bad part is that the infection factor is so high.  If it gets infected it can put pressure on her throat or her heart just depending on the direction of the tube.  He tells us he has done the surgery before and is very comfortable with it. 

     We then start talking about when to do the surgery.  He says they have a 10lbs, 10 week guide line they go by but feels confident that waiting till July will be the best.  The smaller the kid is the easier it is to get the tube out and the less likely they are to scar too bad.  They will have to make two incisions on the right side of her neck.  We have a follow up appointment on June 15th and after that we will schedule the surgery.

     While I am scared about my little girl have to be put under and cut into I know that the doctor can get it done and will do a good job.  One of my biggest worries is what if it goes down into her chest?  Also how do you explain to a 5 month old that they can't eat or drink after midnight?  It's going to be a long couple of months but I will be glad when its all over.

Jacelyn Bonnie Jones

    So I have slacking on my blog a lot, but it's been a busy couple of months.  January was filled with a lot of nervous energy as we realized we were getting closer to having the baby who still had no bedroom and no name.  Jake had to go to work in Seattle when they had a big storm that knocked down a lot of power lines.  I am used to him having to go out of town but I was a little nervous this time cause we were getting so close to having the baby.  On January 23rd my fears came true, I went into labor.  I was super scared cause she was 5 weeks early and Jake was still gone.  Lucky for us they were able to get my labor stopped and sent me home to bed.  I took it pretty easy after that.  The kids were so helpful with helping me carry things up and down the stairs and getting themselves ready for school in the mornings so all I had to do was the girls hair and get them breakfast.  I have the best kids ever!! I also have the best neighbors and friends anyone could ever ask for.  From doing my chores and running kids to school or picking them up for me.  I never had to worry about anything.  But even staying down didn't keep labor away. At 36 1/2 weeks I went into labor again.  This time it was a little harder to stop, but at least Jake was home.  They got it stopped and sent me home to bed again.

     Finally on February 15th we welcomed our little girl into the world.  Jacelyn Bonnie Jones. She weighed in at 7lbs 4oz and was 19 1/2 inches long and boy was she a hairy little thing ;)  We had argued over the name for a long time but this was one that we both liked. Bonnie is Jake's grandma's name and she is one strong cookie! She has been battling cancer for the past few years and she is still just as strong as she was when I first met here. I hope my daughter's will be as strong as her throughout their lives.  Labor was pretty easy and nothing really dramatic happened.  Which is just fine cause we had, had enough drama with this little one for a while.  The older kids have just loved having their baby sister home.  They fight over holding her all the time.  They are all so stinking cute with her.

    After being home a couple days I noticed a dark spot on Jacelyn's neck.  When I rubbed my finger over it some clear sticky fluid came out of it.  I pointed it out to the doctor at her 5 day check and he informed me that it is called a Branchial Cleft Fistula.  He then told me that he has only ever seen two of them and this was the number two.  He told me that she would have to have surgery to close it cause it is an opening that goes from the outside of her neck to either the inside of her throat or the surrounding area of her neck.  They don't want to do surgery till she is 10 pounds or 6 months, but should it become infected they will do it sooner.  I was not prepared to here this after only having her five days prior.  He gave us a referral to Primary Children's Hospital and we are seeing Dr. Meier this Friday so that we know exactly what we are dealing with and she has a doctor ready for when it's time for surgery or it gets infected.  From what I have read they are very rare and so there isn't a ton of info on the web to read so it will be nice to know what is going on.  The next few months are going to be a little nerve wracking but we will get through it.

     I will try to keep this updated as we travel down the road to surgery.  It's going to be a great spring and summer with the kids growing and learning so much.  I'm so excited to take the kids camping, fishing and horseback riding this summer. Going to be a year full of new experiences!!!