Friday, May 20, 2016

When Everything's Not Okay

If I look back, I can remember the first moments of knowing something was off with my pregnancy for Trenton.  We had an ultrasound at 32 weeks. This was the one that was a precaution since our first son was born early due to low fluid, and we wanted to make sure the same thing did not happen twice.

The same thing did not, but it was far worse. The first results pointed at hydrocephalus and kidney issues. Ironically, neither of those really have been and issue. In fact, he did not even have hydrocephalus even though they measured his brain ventricles constantly after that ultrasound. 

I remember the fear and worst case scenario thinking that he might be mentally handicapped. I stayed home from church that night because I just had to sort it all out. The Lord brought me peace. He brought us peace as we went to continuous maternal-fetal specialist appointments with many ultrasounds. The more we went, the better things seemed. Most things pointed to his heart having a small issue in the aortic arch that could be taken care of with a surgery under the arm and maybe a week or two in the NICU. We were okay with that. We had been there and done that with the NICU, and it was okay. 

I had Trenton by C-section at 39 weeks. I was able to hold him right away, and then they took him away for testing. His heart was worse than expected, and they ended up going in through his chest which was a much more serious procedure. His aortic arch was almost completely blocked, and he had to be given a "transplant" arch from a baby who had died. If they had not known anything was wrong, if we had not had that extra ultrasound, it's possible he would have lost all blood flow to his lower body.

The days following this were a blur. I think we felt strong in the Lord during this time. Our most difficult day was when we were told he would not see when we already knew he had not passed his hearing tests. It was devastating. Thankfully, that eye doctor was completely wrong.

He wasn't swallowing well, so they started discussing a g-tube. I think we just felt like we were pushed forward. We took each step as it came, but I got so I couldn't sit in on the doctor's "discussions" anymore. It was just too much back then. 

God definitely carried us through these days. Trenton came home the day of my 6 week pp appointment. In some ways, those first days were easy in there own way. It is the days after you get home when things have to become normal again, and you have to try and fit your situation into the normal of life that it becomes difficult. These are the days when your faith is tested. It is the times when you are on your own to figure out something new and have to figure out the best course of action that your faith gets tried. Sometimes you make a decision, and it turns out to be the wrong one, and then you know for the next time - maybe unless it doesn't work another way either. 

Life becomes very complicated because this part of your life is so much different than most people around you. You grow weary with explaining and perhaps sometimes you just stop- hoping that no one will ask or that they will somehow just try to understand the why of what your life is today.

In all of this, you know in your hear that God's hand was there. You know that He orchestrated all things saving your son's life for a purpose. The little things become big victories. 

Things did not work out, and everything is not okay, but it's the way it's supposed to be. My son is mentally different in the very least because he cannot communicate, but God was good and still is. 

I remember the day that I thought I lost Trenton early in my pregnancy. I begged for his life before I knew anything about any problems. God gave him life and let it continue in spite of what seemed like would be the end at about 14 weeks. God's purposes were good the moment He began forming Trenton with a different genetic make-up than perhaps anyone in the world. 

The orchestration written by God's hand must contain the low notes of the cello along with the high notes of the flute in order to make music that is truly full that will glorify His name.

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