A Visit to the ER = Another Milestone for Anna

We had quite a scare yesterday. Soon after Pamela got to work she got a call from Sarah. Anna was complaining of pain in her bladder. After consulting with the exstrophy nurse at Seattle Children’s, it was decided that we’d try to schedule an appointment that afternoon as Anna’s urologists were both in surgery throughout the morning. A few minutes later Sarah called back and let Pamela know that her SP catheter had completely dislodged. When sharing this with the urology nurse, she advised us to get Anna to the hospital ASAP. Pamela left work and Sarah loaded Anna in the car and they both took off for Children’s. Once there, the Dr Grady and Dr “Z” were called out of the OR and met the girls in the emergency room. The concern was that the opening for SP catheter would close within a short period of time and there would not be a way to drain Anna’s bladder.

Part of the “big surgery” that Anna had last month was the Mitrofanoff procedure or appendicovesicostomy, the creation of a permanent stoma or opening on the abdomen to catheterize through. Anna’s Mitrofanoff was created with her appendix, which was removed from its original position with the vessels still intact. A stoma or cathing valve was created by molding the appendix into a channel and sewing it to the bladder and then sewing the other end of it to a small opening on the abdomen. The opening is usually made at the belly button. Because Anna didn’t have a belly button, Dr. Grady created one. The recovery for this procedure is 5-6 weeks.

Once the Doctors were able to examine Anna in the ER and explore options with us, it was decided that Anna was now ready to have her SP catheter removed and start using her permanent stoma valve. With her bladder now safely tucked inside her body, for the first time in her life Anna will be able to control the flow of her urine. We will need to empty her bladder every two hours around the clock for the next several weeks. Once her bladder stretches and grows we will only need to catheterize every three to four hours. This new way of going potty is pretty scary for Anna but she is also very excited about not having any bags attached to her anymore. We hope that with patience and practice this will become second nature for all of us.

Anna’s ready.. let’s do it!

Are you sure about this, Mommy?

Together we can do this!

Mommy learning how to catheterize

Anna and Lily Get a Visit from the Easter Bunny

Anna and Lily were visited by the Easter Bunny on Sunday. They didn't understand what this Easter thing is all about, but they sure had fun. Baba John hid Easter eggs in the yard for them to find, much to their delight. Some of the plastic eggs contained candy and some contained clues to presents.

Nana Barbara joined us for Easter dinner that was made by Baba John. The consensus was that the scalloped potatoes were to die for.

Here are some pictures of our girls in their Easter dresses sent to them by Dick and Polly, Barbara's brother and sister-in-law.

Finding their Easter baskets

Lily helping Anna gather her Easter eggs











Lily hunting for her Easter eggs











Nana Barbara helping Lily gather her eggs











Anna and her Easter basket

Easter dinner