The dreaded post...

I have been procrastinating this post for a week now, and finally decided that I needed to sit down and document about our last 3 weeks. It has been some of the worst and best experiences of my life. I have been dreading this because I am emotionally and physically drained from our ordeal, and writing about it actually makes it real. Sometimes it feels like we are living in a dream, and everything that has happened was someone else's life. Ever since Lyla was born, she has battled feeding. Sometimes she has been great, and other times she struggles and fights it. So, when she started really fighting eating about 4 weeks ago, I took her back into the doctor and realized that she was losing weight. She had plateaued in her weight over about 6 weeks, then over one week lost 5 ounces. So, on top of our other concerns with her development, our pediatrician thought we should be admitted at the hospital to expedite the specialist appointments inpatient. We were sent to Children's hospital in Orange since Neurology doesn't round in Mission Viejo, which is our closest hospital, and we were there for 2 weeks. During that time, she underwent a number of tests. They determined that there was something wrong neurologically, so they first gave her an MRI. The first specialist, a metabolicist, reviewed it and said that her brain was delayed, that much we pretty much already knew. Mike went home for the night, and after he left the neurologist came in and said that she had an abnormal brain, and a bunch of other stuff that I didn't hear. Of course, I was completely distraught and Mike came back up to the hospital. The next few days are a blur....she had a bunch of blood work done to test for metabolic disorders and white matter diseases of the brain, most of those we are still waiting for the results of. She also had a lumbar puncture to test her spinal fluid, a swallow study which showed she has a delayed swallow, an upper GI study, an EMG and a nerve conduction test which all showed normal peripheral nerve conduction, an NG tube placed to assist nutrition, then finally a G-tube surgically placed into her stomach so we can assure she is getting the calories and nutrition she needs. That all took about 2 weeks. During that time, she was pretty much her normal self, uncomfortable and irritable. She still slept through the night, but she had a hard time during the days. I stayed at the hospital the whole time, Mike came up and stayed pretty much the whole time. We got a room at the Ronald McDonald house two blocks away, and that was really incredibly nice. I will never go by that donation box at the drive-thru and not throw some money in!! It allowed us a place to do laundry, Mike to sleep (I couldn't sleep there, I did better when I was in her room), and a place to shower. It was all incredibly tiring and emotionally draining. At this point, a diagnosis is unclear. We are still waiting for test results, and she will have another MRI done in about 3 months. In the meantime, we are just focusing on getting her weight up, which she is doing quite well with, and making sure that she is getting her nutrition. She has not taken anything by mouth in about a week, but we are still trying. I mentioned that these last few weeks have included my worst and best experiences. The worst is pretty clear, we are concerned for her and what her future holds. But, at the same time, it allowed us to have some incredibly spiritual experiences. Our bishop and stake president came up to the hospital to give Mike, Lyla, and myself blessings after we heard all the bad news. Those blessings were extremely powerful, and filled our hearts with peace. Our ward had a special fast for us on the Sunday following, and the immense outpouring of support from friends and our ward family, and our immediate family, has been overwhelming. My relief society president basically stepped right in and took care of pretty much everything. I have not had to worry about what to do with my other kids because she has provided care for them all. My mom and dad came out to help, as well as my mother-in-law, and my brother and sister-in-law came down to be with us over Memorial weekend. I have had uplifting phone conversations with my sister Debbie, who has had more than enough experience with a sick child and hospital visits. All of these things I would gladly do without if it meant that I didn't have to go through what we have been through with Lyla, but at least I can see how the Lord has answered our prayers and taken care of us through this trial. For that I am thankful. Lyla has actually been doing better since the day before we left the hospital. Between good drugs and a full belly, she has actually been happy! That is something we have never seen before, and it has been a joy to see this side of her. She has been cooing and smiling, and even calm in the car which never happened before. The kids love seeing her happy, and everybody has enjoyed her this last week! For now, we are praying that it continues and we can find an answer for her medical issues. Maybe she was just hungry!!!