Hello Family and Friends,
Happy Valentine's Day!
Jared and Tom woke up to little candy grams left by Cupid and a light coating of snow, left by Mother Nature.
Yesterday was another trying day for us, but we wanted to thank everyone, in particular our CDH families for all of their support and wisdom! It's nice to meet people who have gone through the very same things. You are the one's who reassure us that we are doing the "right" thing in this bizarre situation.
Our family and friends have been great, too! From watching Jared for us to just being there for us to vent to! We hope that our fight for Jaime will pay off and that one day you can all meet our special little boy! For some reason God has given Tom and I this little challenge, we will do everything in our power to prove that we are up for it! :-)
We hope you all have a nice day. We are looking forward to our "Valentine's Day Celebration" with my parents and brother's family at my Grandma's house this evening. (Tom and I went out to dinner on Thursday in celebration of the holiday.)
Lots of Love,
Sheryl, Tom, Jared & "Jaime"
P.S. Thanks to everyone who remembered Jared and sent him special Valentine presents and wishes, too! You guys are the BEST!!!! :-)
Sheryl-
ReplyDeleteI cannot stop thinking of you guys. I have "issues" :) I just wanted to add to my previous post, that the first Peri we saw (at Kaiser) mentioned Fryns to us as well. It TOTALLY FREAKED me out--like I didn't have enough to digest... Anyway, up until we got our 3D/4D of Kaden, it was still in the back of my mind. I just went back to a website that I looked at when I was researching Fryn's syndrome, and it said this:
Face: Fryns syndrome can cause facial features such as small, wide-set eyes, increased facial hair growth, abnormal jaws, low-set ears, and a hole above the mouth area or in the lips (cleft palate or cleft lip). It can also cause other eye and vision problems, such as blurry vision (cloudy cornea).
Distal limb hypoplasia: this means that the fingers, toes, and nails are underdeveloped. They may be short and curved, or have other anomalies.
Fryns syndrome can cause anomalies in other areas of the body, including the heart, brain and spinal cord, gastrointestinal system (which includes the stomach and gut), bone system, and genitourinary tract (which includes the kidneys and reproductive organs).
With that being said, I would think that if Jaime had Fryn's, you would have seen some type of "characteristics" when you had your 3D scan done. His face, his fingers, they would have noticed any problems with his brain... I BELIEVE IN MY HEART that Jaime will be FINE! He looks perfect in his scans, BECAUSE HE IS (except for the CDH :)!!
I know I KILLED myself worrying about what they would find on Kaden--it was the worst 4 weeks of my life--but once I gave it up to God, He has taken great care of us. And He will hold your hand, too, thru this journey.
Sorry to be so intrusive, but I had to get it off my chest. I wish I could just give you a HUG...
First off, big ((hugs)) to you!! As if all this isn't enough? I am glad that you are going up to U of M a little sooner, that will help tremendously. Many, many CDH babes have been told different things based on ultrasounds and I know of only a few that were correct. I also had a ton of amniotic fluid throughout my pregnancy with Noah as well. My oldest son Zane was diagnonsed in utero with all kinds of fun things and came out perfectly healthy. Obviously Noah had the CDH, and as for my current pregnancy, we were told there was a 70% chance of major genetic issues and none have been found. I think it's so very difficult to tell too much from an ultrasound because of the science of it all. I also think that sonographers who don't see babies with anomolies very often tend to go a bit overboard once they find something like a CDH. The fact that your amnio was normal and you have good results from Cinci I think are all very positive things.
ReplyDeleteHang in there and keep taking it one day at a time, sometimes that's all we can do.
"and the trials of the trip will be lost in the joys of the feast" - Mocha With Max
Blessing to you all,
Carrie
(((HUGS)))...I am so sorry you are going through this and I am happy to read you are getting a second opinion. I am not a firm believer in ultrasounds being 100% correct. Stay positive for Jaime. Keep fighting Jaime and getting stronger!!
ReplyDeleteTracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS