Tuesday, July 15, 2008

Baby Bridgette Update #7

After 2 1/2 hours in surgery, baby Bridgette is in recovery, but our news is not the best. She has Total Colon Hirschsprung's Disease, or in other words, her entire colon (large intestine) doesn't function. It will have to be removed when she is strong enough, perhaps in a year.


For now, Dr. Black performed an ileostomy. This means that her colon has been completely bypassed and her ileum (small intestine) is now what is attached to the sack on the outside of her body. We haven't seen her yet, but my parents described the sack as 4" long and 3" wide. Grandma is taking pictures at our request.




The positive spin is that the ileum is where nutrition is removed from food, so she should still grow and develop. If she had had Total Bowel Hirschsprung's Disease, meaning both the colon and ileum were affected, we don't know if she could/would have survived. A small portion of her ileum also had no nerve endings, but it was relatively small.



The only reason she had ever been able to pass anything through her colon is because her ileum was working overtime. It is normally the circumference of a little pinky. They said hers was the size of a garden hose. Eventually the pressure from the ileum pushed the fecal matter through her colon and out of her body.


If a colostomy had occured as we expected, we could have taken Bri home in 2 to 3 days. Now it appears she will be at PCMC for 3 to 4 weeks.


A nose tube has been replaced to suction her stomach during recovery, and she is on pain medication. She will soon have a new PICC line, so she can receive nutrients and lipids in a central vein. The intent is to at least stabilize her weight if not help her gain a little. They will keep the normal I.V. line for antibiotics, etc., as well as wires and instruments to track her blood pressure, oxygen level, breathing and heart rates. We're hopeful that she can return to eating in 3 to 4 days.


We've been told this first year will be very difficult as we watch to be sure the colon does not become infected. We will have to perform continual rectal irrigations as well as other related care. It will be a challenge, but we will do our best to help her have a normal life.


Jeff and I are, of course, highly emotional right now. We've done our fair share of crying over the last week, and a lot of those tears came today. But, now that we have some answers, we are resolved to do whatever is necessary to help this little girl thrive.


Bri, herself, seems determined to thrive as well. After such a long, intense surgery, the nurses were all surprised that she barely spent any time in recovery. She has already been moved back up to her room where my parents are with her as she wakes up. I could hear her making post-surgery baby noises in the background when they called.


Although Jeff really was quite sick, he is on the mend. I never actually got sick, so if I'm fine tomorrow morning, I will most likely get to see my baby again soon. Jeff may have to wait until Thursday.


In the near future, we have a lot to arrange. Jeff is not sure how to handle his work schedule (he changed jobs the day before Bridgette was born) and finishing my master's degree has suddenly become iffy. We will wait to see how the next few days and weeks shake out as we prepare for our new life.

12 comments:

Heidi said...

So were her chances 1 in 400,000 for having Total Colon Hirschsprung's Disease? Or what is that statistic referring to?

Anonymous said...

Hirschsprung's disease of any kind is 1 in 5000, it is five times more likely to happen in boys than girls. To have the entire colon non-functional happens only in 5% of Hirschsprung's cases.

1 in 400,000 is just an estimate of the odds of being a girl and having total Hirschsprung's disease.

Lisa said...

My heart aches for you, especially when you had to wait so long to get her. May you find some peace and comfort and I'm sending you a hug!

{{HUG!}}

Lisa

tangram said...

We know what it is like to have your 1st child ill, but not for this long, if there is anything we can do, please let us know as we are not that far away.

All our love the Eric Blakes

Krystal said...

Hey guys--
I check your blog daily so thanks for the updates. I wish there was something we could do for you, we feel for you. We hope that Bri will fully recover from her surgery and that you will be able to bring her home soon. This experience is extremely hard and we hope that you will find comfort. We love you!

Ann-Marie said...

Kel, did you get to see her today? I finally got to sleep at 3 am last night and have been devastated all day. You're in my heart and prayers. I'm praying you and Jeff get to see her soon. Love you.

Gene Cole said...

Hi Kelly and Jeff,

Bridgette is simply gorgeous and looks like a fighter, just like you guys. And with everyone’s love and prayers, I know she’ll be blessed now and in the future, especially since she’s got such a wonderful family. I see her future as a bright one!

Gene Cole

Kelly said...

Did you know I have started college 4 different times? I am confident that someday the time will be right for me to get my degree! (Mark's Kelly)

Amanda said...

I am so sorry to hear of everything that has happened, but I'm glad that you finally have some answers.

As you said, the next year is probably going to be a difficult one, but that is why you have family and friends to help you out. There are so many of us who would like to help, but maybe aren't sure how to, so please, please, please, when you need something, call.

Who's taking care of your dogs? Is someone picking up your mail and taking care of your house? Let me know if I can help in that way.

You are all still in our prayers of course.

Marilyn said...

I am so sorry about your sweet baby's problems. I have been praying for Bri and I know that my mom has been, also. Tonight is our temple night and I will put her name on the prayer roll. Thanks for blogging so that we can all be updated. love,Marilyn Williams

Schiffman said...

Hi Kelly,

I found out today that you had your baby. Congratulations! Your baby girl is beautiful. She seems like such a sweetheart. What a sweet little blessing. I'm glad that she is strong and is recovering. I'm happy to see pictures of your sweet girl. Thanks for posting them!

I'm sorry you have been quarantined! I read a quote once that "being a mother is like taking your heart out of your chest and watching it walk around." It must be hard not being able to be with your baby. I will keep you in my prayers. In the meantime, I hope the recovery continues to go smoothly.

Lisa Schiffman

Janel said...

my son also has this condition but his story is different. He is much older than your lil one. I invite you to read my blog about our struggles. He was just dx this year and he is 5.