Monday, October 02, 2006

Tyler Jacob, my next grandson

This is a bad day for me. Clay and Carrie, my oldest son and his wife, are expecting my next grandson in February. Nothing like getting all my grandchildren within a year and a half. Unfortunately, Tyler has some inflamation in his intestines and the doctors are concerned about cystic fibrosis. Clay and Carrie both carry an abnormal and normal gene for CF. Tyler has a 25% chance of being born with it. It won't make a bit of difference in the way I feel about Tyler, it will just be a little more challenging if he does indeed have it. He could be tested in utero but the results wouldn't change anything and Clay and Carrie have opted not to have the test until birth. Those are the facts. The reality is that I am sad, depressed and scared. Like any other Granny, I want my Grands to be in good health. I will love Tyler ayway, I just don['t want him to be ill and suffer. It's not a pretty disease but Clay said it could be a lot worse. A good attitude. Please put Tyler on your prayer list. I thank you.

4 comments:

Michellene said...

Pam,
My heart goes out to you.

I have a 19 month old with CF. They didn't see anything on ultrasound...

He was born with a Meconium Ileus which is due to CF. He would have needed surgery were it not for the speedy response to the many complaints that my son hadn't passed the meconium yet. I fussed about it and they finally ordered necessary exams.

It wasn't for sure until the DNA tests came back...they thought it was Hirschsprungs....but it wasn't.

I can only tell you to be sure that your daughter is very keen to what she is observing the baby do. Pray for poop!

That was the ongoing prayer when my son was born. "Pray for Poop".

If you live near a Children's Hospital, and IF the baby has a meconium ileus, it's best to get the baby there right away...to hopefully avoid surgery.

Our pediatric surgeon, Dr. LoSasso at Children's in San Diego...was amazing. With his patience and expertise...we actually avoided surgery. My son had 5 barium enemas and the meconium obstruction was finally passed.

He's an amazing little boy. My Kai. No, the diagnosis isn't easy...but the treatments are incredibly efficient...and if the baby has the diagnosis, it's just going to change the way you see things.

In our home, life is more precious...we love a little harder...

Overall my little guy is very healthy...he's got some weight issues...he can't gain like Mom is so good at doing... For now, his lungs are perfect...and he's just got severe pancreatic insufficiency.

I will pray for you, your family and little Tyler.

No matter what...things are going to be what they are...and things are going to be ok.

Trust me...I am living it.

Carolyn said...

Oh Pam... There is really not much more I can say after michellene's post, but anyway, hugs to you, dear one.

Jerry said...

Pam, your family is in our prayers once again. I am so glad Michellene could offer support from her own personal experience. That's a blessing right there!

Jerry

Angi said...

Pam,
Which test was positive? The AFP tests are really bad for false positives. As a doula, when asked, I don't recommend the mom's even taking it. I'll be praying for Tyler and the rest of you.