Monday, February 24, 2014


I have been noticeably absent from writing lately. Things here with our sweet little girl have been pretty rough the last several months, and my focus has been on her. I gave lots of updates when we went to National Jewish Hospital in August, but haven't given many since then, so here is the scoop. 

In October she underwent stomach surgery (Nissen Fundoplication). This was ultimately to help with her breathing issues. Her reflux had gotten so bad that she was aspirating food particles into her lungs which made fat grow in her lungs and made it hard to breathe. 

In November she had to have her 2nd brain surgery (Chiari decompression). She pulled through amazingly well, and we thought we were going to be done for a while at this point. She was sent home from the hospital just before Thanksgiving.

In December we took her to the ER because she had a spinal fluid leak. She ended up in the PICU for several days on IV antibiotics. The incision line healed and we thought the leakage had stopped, so they sent her home. Unfortunately this was not the case. The leakage was just contained inside her body and she started to develop large lumps under the incision site. 

In January she had to go back into surgery to repair the leak. It was during this surgery that we were told she has hydrocephalus and pseudotumor cerebri. The surgeon repaired the leak in the dura (sack around the brain) and placed an external lumbar drain and she was in the PICU for 2 weeks. We were again hoping that this would be the end of her struggles for a while, but it was not.

In February I discovered that she was again starting to build up fluid under the incision line. Within 2 days of calling the surgeon's office to let them know my suspicions she was back in surgery to have a vp shunt placed in her head. Now the excess fluid within her head is drained into her abdomen. 

We are really hoping that our poor sweet girl can get a break from surgeries and hospitals for a while. We really appreciate everyone's thoughts and prayers for our family! We are hoping we can get back into a "normal" routine soon!