Saturday 1/31

I was feeling discouraged yesterday because with all the stitches pulling open I felt like we had been here for 3 weeks and 2 surgeries for nothing. But talking to the surgeon todayI realized that they did make some progress. In the first surgery they did some general reconstruction and repositioning of that whole area. And now the bladder sits further down inside instead of right on top. And hopefully with the cast the pelvis will stay pulled together. The cast will come off in approximately 4 weeks and Urology will see Natalie back at 6 months to reevaluate and make a plan.


They took the catheter out today. Because the bladder is open there is no concern about putting too much pressure on it. I always said I never wanted to have to take a baby home with tubes in them so I guess I got my wish. Ben and I were feeling kind of intimidated by the fact that everything is open and exposed but the doctors said it's really not at a risk of infection. She'll be able to bathe as normal once the cast is off. And oh, the good scrubbing she is going to get! A sponge bath just doesn't cut it.


From the surgeons standpoint they are done and are fine for Natalie to go home. From the NICU side of things she needs to get off the morphine drip (they put her on that when they took out the epidural) and she needs to be feeding on her own. She had a couple of good feeds overnight but today she has been either too sleepy or just uninterested so they've fed her through the feeding tube. We'll keep trying the breastfeeding and hopefully in the next day or so we'll get back in the groove. I will not speculate on an exact day but h-o-m-e is definitely on the horizon.


Ben and the girls came up yesterday and today to the hospital. We had said before that we wouldn't have them come up again but that was when we thought Natalie would be home by now. They were the usual visits....a few minutes in Natalie's room, a walk to get a treat, a trip back to Natalie's room to say goodbye. Even though it's quick and not the most relaxing it's still good for them to see her and for me to see them. I left the hospital with them yesterday to go get lunch but now since Natalie is breastfeeding (or attempting to do so) I feel like I need to stick close by.

Q&A
Laura, to answer your question: as far as I understand it this birth defect is strictly anatomical and doesn't affect any other systems. The structures in the abdomen area just didn't fuse together for some reason. Obviously since we are dealing with the bladder there may be some continence issues down the road that may require future surgeries. Also, with the pelvis positioning she may waddle a little when she learns to walk but they haven't found any long term back or hip problems with that. I have only done a little research on my own beyond what we've learned from the doctors but it seems like people with bladder exstrophy are able to live basically normal lives.

Dad Clove, to answer your question about how the urine is able to come out of the body if the urethra is not intact: I asked the surgeon about it and my analogy of the water slide is correct. Normally, the urine would flow from the bladder through the closed pipe of the urethra to the outside. In Natalie's case the uretrha would act more like a water slide than a closed pipe. Isn't that a nice visual? Actually, when you think of all the little kids in a swimming pool it's probably pretty accurate, he he he. Now, since the bladder is open and exposed the urine just goes directly into the diaper once it reaches the bladder.

Sorry for all this potty talk.