A Visit with the Pediatrician

Yesterday we decided to bring Aria to a pediatrician that came highly recommended as "the best in the entire country". We knew we had to get in to see him as the Child Protection Agency didn't seem at all concerned when I pointed out the noticeable bulge on the top of Aria's head. We were hopeful that Dr. Jabour, the pediatrician, would either confirm our fears and help get us the treatment she needed, or put us at ease that perhaps she didn't actually have Hydrocephalus. We called this morning and they told us to come in for a 2:15 pm appointment.

The day was long as we waited for our appointment. Aria has been quite lethargic, sleeping the majority of the day. When she is awake, she is quite irritable. She's still struggling with eating too - all symptoms of Hydrocephalus. 

On the positive side, she loves being held. So much so, that if I'm not sleeping, I'm likely holding her. She has a favorite position she prefers and she will let you know that she's not happy if you move her out of that position. She has the sweetest little yawn and the cutest little snorts.

Finally it was time for our doctor appointment. Once again, Quincy picked us up and drove us on a quick trip down the road to Dr. Jabour's clinic.  We had to show them our custody paperwork and they wanted to speak with Aria's foster mom. We found out from her foster mom that she was born full term weighing only 4 pounds. For some reason, she was being malnourished in utero.

Finally the nurses brought us into the room, weighed and measured Aria and we waited to speak with the doctor.  He confirmed that she indeed needed a shunt placed asap, but only Dr. Dukhi, the neurosurgeon, could do that and he didn't work weekends. We had to wait until Monday to see Dr. Dukhi and find out if and when he'll be able to do the procedure. WHAT? I had really thought he'd admit us to the hospital and Dr. Dukhi would start the process of prepping her for the shunt placement. It was heartbreaking to hear we'd need to wait the weekend before speaking with neuro.

Due to the fluid in her head, she's likely experiencing quite a bit of head pain. We are hoping and praying that Dr. Dukhi will get her scheduled for surgery next week. We are scared and overwhelmed right now knowing the urgency and not being able to do anything to help her. 

Dr. Jabour also pointed out that Aria has cerebral palsy.  This is a common diagnosis for kids with schizencephaly but another thing that was never mentioned in any of her paperwork. It was a very hard to hear all this bad news.

A bit of good news. Dr. Jabour said that even though Aria is malnourished, she's not susceptible to refeeding syndrome because on a scale of undernourishment, she's in the middle. Her foster mom has been feeding her powered milk and rice cereal. When we told the doctor, he said she needs to be put on infant formula ASAP.  After our appointment, we stopped by the grocery store for formula and headed back to our hotel. We tried feeding her formula out of a sippy cup nipple and she gobbled up 2 ounces! This is the most she's ever willingly eaten. We were so excited that perhaps fighting over food with her was over. Unfortunately, that only lasted one feeding and she was back to refusing food.

We'll be spending the weekend at the hotel, encouraging Aria to eat and keeping her as comfortable as possible until Monday morning finally comes. We'll be heading to the Georgetown Public Hospital right away in the morning. Please pray that Aria starts eating better, that her head stops causing her pain and that a shunt can safely be placed quickly.