Sunday, April 5, 2009

matthew and nathan

hi lovey love=)

so i'm feeling the slightest bit better about things. i don't necessarily regret you getting a g-tube. it was definitely what you needed. but daddy and i keep laughing (as synical as the laughter might be) because we came into the hospital almost 2 weeks ago thinking this was going to make feeding you so much easier, but we're going home with it being so much more complicated.

so after dr rodgers talked to us wednesday we had a better idea of what he found and therefore did in the or. there was a "knuckle" of bowel stuck down in your pelvis. and at first he saw just one hole in it and he thought he would just sew that back together and move on with it. but then when he pulled it out he saw 3 more holes. so he ended up cutting 8 inches out of your small intestine (that's about 10% of the whole thing-actually not too big of a deal in the long run) and pulling each cut end up to the surface of your tummy. right along the line of your original incision. i'll show you a picture soon. so now you have 3 holes up there. the one on your left side is where the original g-tube was. they'll now close that until we can use it again. the two others are called an ileostomy and a mucous fistula. these two are big and beefy red because it is plain and simple a little bit of your intestines sitting right there on your tummy. weird kinda. the one in the middle is only a few inches (on the inside, and outside) from the first one and it will now have an bag over it to catch all the yuck that comes from your stomach. it will also catch anything that you drink as we keep teaching you how to take a bottle. and then the one on the right side of your tummy will have (hopefully-they're going to try today) a new g-tube button on it and that's where we'll really feed you like we would've done through the g-tube in your stomach. you have lots of intestine below that last hole so you shouldn't have a problem absorbing what you need and growing and gaining weight like you should. but speaking of gaining weight, you've actually lost 14 ounches since you've been here. sweet skinny little face. that makes us very sad. you'll catch back up baby-no worries. all this is temporary. he said in 6-8 weeks he'll put your intestines back together. but that means another surgery. and we can't help but be pretty terrified of that now. but no use focusing on being scared.

so we're definitely a little overwhelmed at this point. we're not sure yet if we'll be able to feed you with a g-tube button through the mucous fistula....and if we can we definitely won't be able to just bolus feed you (the faster way) because there's no reservoir like you would've had if it had been in your stomach. we're hoping we can feed you most of your food through a continous feed overnight so we can still get you up and moving around and playing during the day. ugh. only 2 months. that's what i keep telling myself. and i can't believe that, a) not only do we have to start interviewing new nurses, but b) we now have to make sure she can handle all the issues that come along with these extra things on your tummy. but you're a very sweet girl. anybody worth being at our house will realize you're worth it;)

daddy is funny. he gets sad about this too but he handles it a little different than me and i like that. it's good for me and it lifts my spirits. example. we have named your two intestine nubs after two of your uncles, matthew and nathan. matthew is the one in the middle, the one that will have the ostomy bag on it. and nathan is the one where you get fed. did i tell you that you get to poop like normal? not into a bag? that's a good thing. you'll have some bile and stomach juices coming into the bag but not your poop. i realize this is again a weird topic but we're pretty happy about it=)

we're getting a few smiles. they are few and far between but they make our day every time. gigi got you smiling this morning by laughing like a crazy person. we got a picture of it:

here's another one of my favorite pictures from this hospital trip. you are the most beautiful thing=)



here are some more. i realized i have lots of favorites.


sweet face=)

ok that's all for now. love you sweets=)

mommy

14 comments:

Sassy and Classy Southern Mrs. said...

I have been thinking about sweet Catherine and all that she is going through. I work as a healthcare recruiter that staffs pediatric nurses for homehealth and the families are facing the same troubles as you are. You are so strong and just remember that all of the decisions you guys are making will be better in the long run for her.

Abby & Pete said...

catherine you are one gorgeous girl. we love you and are praying for you with all the new holes and buttons. I wish I was an experienced nurse and could come take care of you.

DrmCtrsLtSl said...

Oh Katie, thanks so much for the update. Catherine looks wonderful! Any word on when she may come home? The pics are wonderful. Love those blue eyes :) Catherine's arms and legs look so long and skinny, cute :) She looks happy and content in the pics. Glad your mom is here with you. Love how Donnie named things. It is true, how you have to find the humor in things at times in order to stay sane. Love you guys as always. Many prayers.

Kaye said...

Thanks for the update! I wish we could get moved to Richmond, I would volunteer to help with your adorable Catherine. She looks healthy, happy, and great developmentally even though she has had a rough time of it! I know you are so happy that she is improving. You continue to be in my thoughts and prayers---all of you! (I bet her uncles are honored to be named after stomas!) Keep the faith.

A Southern Wedding Belle said...

Such great news and such a great beauty! We're so glad that Catherine is getting better. Thanks for the new pictures. We love you all - Mama Debbie and Leo

Beth G. said...

She's so beautiful! Praying for you Catherine!

Dewberry Discourse said...

So glad to see Catherine smiling. I wonder what most of us would do if we had to undergo the things she does! Praying for you guys. Love, Dewberry's

Brad, Kellie, Lucy and Baby Carter said...

Katie, she is so beautiful. I am glad to hear that things are a little more positive after talking to her doctor. I don't know how you do it!

twinsplusone said...

still praying.....we still laugh about moments and memories in our 7 week NICU stay....but now all we have are small scars on a sweet baby boy's belly! ( we have a g-tube scar too!) You can do this- you are a great Mommy! God chose the perfect parents for Catherine.

Lindsey said...

Hi Katie,

I was forwarded your blogsite by a friend who also has a CDH baby. She forwarded it to me because we met in the NICU at Duke, and our baby had intestinal issues (NEC) and has an ostomy, this is actually his 2nd ostomy. He is 6 months old now, and doing great with it, but I know how frustrating nad overwhelming it can be. Feel free to contact me at lindseysouza@gmail.com if you'd like to talk to someone about all the tummy issues and/or check out our blog at http://lindseysouza.blogspot.com

Lindsey Souza

PS: your little girl is such a cutie!

Emilie Smith said...

Hi friend! Catherine is so, so pretty! She is one tough cookie too. And, so are you. I love you and am praying for y'all! Hang in there : )

Christopher, Alicia, and Avery said...

Love the pictures Katie! Thanks for the continued updates as we are always praying and thinking about you guys in Alaska:)

TKD said...

She is so gorgeous! And she looks like she's handling all of this so well! She's a trooper!

Deb said...

She is so beautiful.