Trenton's story began long before we found out we were expecting him. The very proof of this goes back to the birth of our first son. When I was pregnant with Braydon, I had a very uneventful pregnancy until week 32 when I measured small. The doctor did not seem to be in a rush, but waited about three weeks to get me in for an ultrasound. At that point, there was 4cm of fluid around him. The doctor wanted to see me the next day. The stress test went fine, but when she checked my fluid there was only 2cm of fluid around him. She seemed a little stressed at that point and would not even let us go home before we headed to the hospital. I ended up delivering by emergency c-section the next day.
Fast-forward 2 years. I was now pregnant with Trenton. The pregnancy had basically been uneventful. I had a small issue in the beginning, but it corrected itself. Because of my first pregnancy, the doctors decided to have me get an ultrasound at 32 weeks. Everything had been good at the 20 week ultrasound as much as they could tell. I actually had two around that time period. Trenton was breech at this time when they did the 32 week one. After the ultrasound, the doctor seemed a little concerned. The fluid was fine. I actually had more than normal, but some other possible problems had shown up. She mentioned that his brain ventricles seemed enlarged as did one kidney. Since he was breech, most likely his heart was hidden from view on that day.
It was a Wednesday. That night, I stayed home from church and prayed and cried. I gave it to the Lord, and He gave me peace. The next week we went to a follow-up appointment at a hospital that was better equipped for high-risk situations. I prayed that he would turn, and he did. At that appointment, they basically ruled out that we should be concerned about the initial 2 problems. But then there was his heart. They looked at it over and over. One side was larger than the other, and they had a hard time examining the aortic arch. They sent us to a cardiologist. He examined the heart and thought that Trenton may need an aortic arch surgery.
We left that appointment fairly happy. We knew God was in control, and the situation did not sound too serious. We knew he would most likely have surgery to correct an issue with his aortic arch. The doctor thought he might be in the hospital for around a week.
Everything stayed about the same throughout the rest of my pregnancy. I had him by C-section, and it seemed to take forever because the doctor was working with residents, so she was teaching the whole time. I got to hold him almost immediately. They just had to do the routine initial checking. He was able to breathe on his own, and he looked good.
We later met the doctors in the NICU and were told that he would have surgery, but rather than the easy surgery we had anticipated, it would be through the chest, and his whole aortic arch would be replaced with that of a donor baby's arch. It is still amazing to me when I think about a parent donating their child to help another.
The surgery went well, and then the wait began. Initially, doctors were wondering if he had some genetic abnormality. They talked about a couple of syndromes. He spent a while in the PICU after the surgery, and then he was moved back to the NICU. During that time, Stacy, one of our nurses challenged me to be Trenton's advocate. She said we really needed to talk to our geneticist.What I did not know is that Stacy suspected Trenton had CHARGE syndrome. A close friend's son had it, and she thought it might be what Trenton had. Genetic testing was done, but before it came back, an eye exam showed coloboma. With the cranial facial paralysis, kidney abnormality, heart condition, skeletal abnormality, and now this coloboma, it was ruled CHARGE syndrome even before the tests came back positive. So then our journey began with more knowledge, but in many ways, nothing had changed.
Our son had a genetic disorder. If our first son had not had a problem that made him come 5 weeks early, our 2nd son would not have lived long after birth due to his heart condition. All of that to say, "God is in control."
It is still not easy. Raising kids is not in general. When you add a g-tube and developmental issues, it makes it hard to focus on the positives even when there are several.
Sometimes I let myself be discontented at our situation. The truth that I must remember is that God saved our son from death for a purpose, and He made it obvious to us that He was in control of the situation.
Many reading this may have more difficult situations. Whatever the situation, it is important to remember that God is in control. If you have trusted Him as your Savior, then He will work every difficult situation and every good situation out for the purpose of your sanctification.
If you do not have a personal relationship with Christ, then you might not know the hope that I have, but you can know it. God sent His Son Jesus Christ to take our place so that we do not have to face eternal death. He is our advocate. As a child who cannot help himself, He goes before us to His Father and claims our innocence from the sin for which He died. He died on the cross many years ago, and our faith in that work today is what brings salvation from sin and hope for eternal life. John 3:16 says it all. "For God so loved (your name) that He gave His only begotten son, that (your name) believeth in Him should not perish but have everlasting life."