It's been a whirlwind of a beginning!

As you all know, Evan was born on March 19th. He was born a seemingly healthy baby who just liked to sleep a lot and was a finicky eater. We (and the doctors) chalked it up to my being on magnesium for so long during labor and then having a c-section. He lost quite a bit of weight (11%) in the hospital, but then he started eating better.

We were released to go home on Tuesday March 22nd and he was doing much better. Still VERY tired. Rarely opened his eyes. We had a doctor's appointment two days later to check his weight and he had gone up 2 and a half ounces from discharge. We were excited he was gaining weight. The doctor said his reflexes, etc... were all normal.

Fast forward to Friday the 25th. We get a call from the pediatrician and she told us that the results from Evan's newborn screening had come back and Evan may have a condition called Maple Syrup Urine Disease (a 1 in 185,000 genetic metabolic disorder). She told us to watch for him to refuse to eat and to become completely unresponsive. They couldn't do further testing until Monday because the labaratory they needed to send his labwork to was in Oregon and doesn't accept labwork over the weekends (Go figure!)

Over the weekend Evan wasn't eating well, but he was still eating. He was still reacting and crying when he was wet/hungry. He still only opened his eyes a few times a day.

On Monday, we took him to have his labs run and then got a call that our pediatrician wanted to see him again. We took him right in and she did her exam. Reflexes still looked normal. Weight had stayed the same, but wasn't a major concern because he was still in the window of time where some babies lose weight after birth. We left the appointment feeling pretty good.

We got home and Gary ran to the squadron to take care of something. I got a call that the geneticist our pediatrician had spoken with wanted to see Evan right away in the ER. He was calling the ER to tell them that we were on our way. I called Gary and my mom and I met him at the hospital.

Evan was almost immediately taken back to a room. He was no longer allowed to feed orally and was put on an IV with high levels of glucose. They took at least 10 viles of blood and took a urine sample. My poor little man was being poked and prodded like crazy. They ended up putting two IV's into him for precaution.

The geneticist said Evan's reactions were good, but things were still not seeming normal and he wanted to admit him to be safe. So...up to the General Pediatric Unit we went. They continued with his glucose and monitored him closely. The geneticists were very good about explaining everything to us. Right now it was a waiting game to see how his labwork looked. The local labs all were coming back normal. No infection.

Come Tuesday, my mom had to leave and we were still waiting on results to see if he had MSUD or if it was something else. Gary took my mom to the airport and a friend came to sit with me so I wasn't alone. The geneticists came in during this time...we had an answer. The geneticists started to talk and I started to cry. Stef just stood up and held my hand and the doctor's told us the news....Evan does indeed have Maple Syrup Urine Disease. His little body can't break down protein and will never be able to do so. He will be on a special formula for life and has to eat a special diet along with it. His proteins need to be weighed to avoid having an episode that could put him back in the hospital.

At this point, we are still in the hospital trying to get him on the right mixture of formula. He is being fed through a feeding tube and has a central line pumping glucose into his body. It is so hard to watch my baby with all these cords and wires attached to him, but he is slowly starting to react more every day. He has even started to open his eyes a bit more for a bit longer each time.

Right now it is a waiting game. His reactions and pupils are showing us that he is still showing normal neurological signs. There is always a chance that with the high levels of amino acid in an MSUD child during an episode that this could change. Please pray that he doesn't have any neurological damage. Although we would love him just the same with any issue he may have, we have our hands full with him as it is.

We are waiting for the formula for him to work and for him to essentially "wake up". Although he wakes up, he is not fully awake with eyes wide open when he is. Once he "wakes up" we will push the bottle with his new formula and when we can get him completely on oral formula we will be able to go home. It could be a few days from now or it could be a couple weeks from now. We sit and wait. The doctor told me he has NEVER seen a child not wake up. He told me that he guarantees Evan will wake up but it's just a matter of time. So we sit...and we wait....and we sit...and wait.

Please pray for our little man that he wakes up soon and we can get things in order to go home. We know we will be dealing with this for his entire life, but we are ready to have our baby at home.

If you're more curious about what Maple Syrup Urine Disease is, just google it. There is a lot of information out there