Had alot of visitors down to the hospital throughout the day, which tremendously helped us pass the time, but it just was another hard day. The roller coaster ride continues, this isnt a fun one though, its more like the one that gives you a horribly terrified nautious feeling. I am trying to be strong for Brook, but our ride home from the hospital at 9 pm tonight was just tough. Reality is starting to set in for both of us, and we dont even know what words to pray or how to think or really what to do. I am a big guy who has always just felt so invincible, so strong, so tough, but right now I just cant even describe with words how I feel.
I don't want to make it sound like its all doom and gloom for Drake and for us, its just right now we are physically exhausted, mentally perplexed, and spiritually drained. Basically we are currently near the bottom of the NICU roller coaster and just need a good nights sleep, some positive news, some good encouragement, and a whole bunch of prayers tonight and tomorrow to start climbing back up the tracks. Looking at pictures like this definitely is a step in the right direction!
We know God has a plan, we really do, I just wish it was a bit easier and more clearly defined at the moment. Drake's preliminary MRI results came back today, and while we were super encouraged by the results not showing near the damage that could or should be done, his brain is currently about 5 weeks behind in developing. The hemorrhaging has been fixed, he isnt showing any signs of calcification and all sorts of other stuff that could be happening. Its just his brain just hasnt developed yet like it is supposed to. What that means right now I dont have a clue and neither does the neonatalogist who gave us the preliminary report. We will meet with the specialists on thursday to get the full report and a ton more information about what that means and what to do from here.
Congenital Symptomatic CMV is very serious stuff and can start attacking his brain, eyes, and especially ears at any time over the next 2 years. Even with all the test results back positive, the unknown is still imminent. We can do nothing with our own power to prevent or fix the situation. Treatments are fairly experimental, and have harsh side affects. I love Drake more than I ever thought possible. No matter what happens to him he is already my best friend for life. Together we will overcome any obstacles. I know he is going to be a world changer.
I think the hardest thing for me right now is not being able to completely comfort and protect Brook. I can't comprehend her thoughts, feelings and emotions and I definitely can't just fix them. I know she is going to be alright, she is an amazing woman, its just the changes in her life she is currently going through won't be just a seamless transition. We know God has a plan for us, our faith is not wavering, we arent asking questions like why us, we arent bitter, we arent mad, and while we dont know exactly what lies ahead we arent even questioning God's plan. We just dont exactly know what it is.
Spending a week now in the NICU we definitely know firsthand that there are many people currently going through and dealing with things that are way harder and worse than our situation. There are young mothers watching their new babies hooked up to life support and watching them through glass doors all day long and they dont have anyone there to support or comfort or pray for them at all. While things could definitely be worse for us, it still is just a tough time we are going through, but we will emerge much stronger and with much more purpose than before.
Right now the world is standing still, its 11:28 pm. I just spent some time getting ready for bed, and then spent some time just holding Brook, she didnt want to talk she just wanted to cry for a bit. Now I just am finishing up some thoughts from the day. The olympics have been turned off in the background, I can hear Mae an Noah breathing heavily while sleeping down the hall, Patsy has fallen asleep behind me on the blow up bed, Brook is just walking into the kitchen to fill up the glass of water that she keeps on her nightstand and I am just about ready to head for bed myself.