What's Been Stressing

I usually love the holiday season, love the cheerfulness, the lights, decorations, the attitudes. But I do have to admit that it has been a little different this year.
This year I have had a lot on my mind. A lot that I am worried about.
This December always looked scary. First is the fact that we are coming into the cold and flu season. This never stressed me out until Evee came along. 
There are also a lot of appointments this month. The GI doctor had not been impressed with Evee's weight gain and had me schedule a Barium Swallow Test to check for aspiration and an upper GI scan to make sure it was functioning properly. Then Evee had her recommended 6 month MRI scheduled for the end of the month. All of the tests and appointments that screamed out at me from the calendar, the MRI seemed especially daunting. It was scheduled for the 27th of December.
Things got worse when we visited the GI doctor, Dr. G. He had told me previously that if Evee's weight gain got better, then we could cancel the tests. Since I was supplementing with an extra bottle of milk a day, I figured we would be in the clear. But once Evee was placed on the scale, I knew the tests weren't going to be canceled. Evee had only gained 6 oz in 3 weeks. They would have liked to see an ounce a day, or even 1/2 an ounce a day. 6 oz in 21 days was not acceptable. When Dr. G came in, I knew that it wasn't looking good. He told me to give her an extra 10-12 oz of milk a day. This is a huge amount when your baby will only eat 2-4 oz at a time, and when she eats 4 or more, she pukes it all up.  But that was not all Dr. G had to say.
He told me that if Evee didn't pick up her weight gain in the next 3 weeks, she'd have to get a G-tube, a feeding tube that is put into her stomach.
Though a G-tube is not the worst thing in the world, it's still not great. It is still a surgical procedure, one that she would have to be sedated for. Because of her breathing, she would not just be sedated, she would have to be intubated. Intubation is when a tube is inserted into the airway. This keeps her airway from collapsing on itself while she is sedated. Intubation can cause problems though. First it can cause damage to the mouth, throat, and airway. It creates scar tissue, which is not good, especially in a smaller, restrictive airway. Also, with Evee's low muscle tone, there is the possibility that her body would get use to this "easy" way of breathing, causing her muscles to "forget" how to work on their own. So, intubation = badness.
Suddenly, the MRI was at the back of my mind whereas my focus was consumed with Evee's weight and food consumption. Life, if it wasn't already, became very stressful. I found myself anxious, with a cloudy mind. I could not focus on one thing for very long for something else was gnawing at me.
Then we had an appointment with the Geneticist. As part of the appointment, Evee was weighed, measured, and head circumference was taken. While talking with the Geneticist, Dr. P, we noticed the growth curve of her head circumference was a very steep incline. I knew that this was not terrific news, but just how bad, I did not know. Dr. P mentioned that she would talk to the Neurologist, Dr. N about the head size.
I was feeling very anxious. Everything seemed to be going wrong, yet everything seemed to be fine. I would be asked about how Evee was doing, and I would reply with "good", but even I was unsure of that answer. I didn't feel as though everything was terrible, but nothing was really terrific either. I had a very uneasy feeling that something was going to go down soon.
Monday morning I got an email from Dr. N, the Neruo, about Evee. She wanted Evee to get an ultrasound on her head. I soon got a call from the Radiology Scheduling and they wanted her to come in that day. Fortunately, it worked with my schedule and I took Evee in.
The ultrasound was not a big deal, not invasive, not painful, and the tech was very nice and talkative. After she was done, the tech asked us to stay in the room while she checked with the radiologist to make sure she got all that was needed. NOTE - if the ultrasound tech ever leaves the room, it's because she saw something that was NOT good. That's just been my experience.
Things were feeling VERY stressful. I had a baby that wasn't gaining weight and was increasing her head size. After talking to my mom about all these stressers on Monday, my mom called back an hour later to tell me that she was flying into town that evening. I felt such gratitude that I started crying. It was really helpful to have my mom come. It was nice to have some emotional support, and it was good to have someone help me with the boys. Unfortunately, I have been feeling very stressed and I know that it has been affecting my parenting.(I will not even mention the cleanliness of my house)
Tuesday, I heard back from Dr. N. The results showed that Evee's ventricles (the fluid portion of the brain) were looking enlarged, but because the ultrasound doesn't give the best of information, we needed the MRI moved up in the schedule.
We moved the MRI to Thursday. We were attempting to do the test without sedation (without intubation), but that in and of itself is nearly impossible. Getting an MRI is a long process, takes 45 min - an hour. During this time the patient has to lie absolutely still. We were hoping that Evee could sleep through the test, which sleeping for an hour isn't that difficult. What makes it difficult is that an MRI is an incredibly loud procedure.
We prayed and prayed that Evee would be able to sleep through the MRI. I asked the women of our church to pray for Evee. We prayed as a family, and I prayed all I could. I felt that God would help us, I just needed to trust Him.
Todd was sure that we were wasting our time, that this was not going to work, but I am stubborn. I wanted to give it our best try.
Thursday morning we woke up at 5 AM. I heard Evelyn blowing raspberries. Evee usually doesn't wake up until 7:30, so I took this as good news, as part of God's plan. This early waking would help Evee be more tired when it was time for the test, at 7:10 AM.