Parenting a NICU Baby

In the following days everything seemed so unreal. People came to visit. I remember little of it as I remained in the NICU as much as they would allow, which was a lot. Due to our circumstances they were very lenient with us. As people would come and I wasn't in the room they would leave little signs for us. We left a pad of construction paper in the room for people to leave messages. It was so good to know everyone was rallying behind us.

We were new to our church and knew very few people but they did everything they could. Isaac was doing better than expected. Howard expected nothing less. He prayed constantly for a miracle. I can remember at first being slightly irritated with him because as I said before I wanted to be realistic, I wanted to brace myself, I did not want to be floating on a cloud that would eventually disappear.

He continued to do well and I admit I began to be hopeful. Our goal was to get him home. I really thought it might happen. I remember walking into the NICU one day and going over to him and the nurse asked if I would like to bathe him and change his diaper. I was on cloud 9! I was getting to care for my son. I had been just sitting by watching nurses do it because I felt so incompetent. This nurse must have seen how helpless I felt and she gave me something to do and it felt great! As I left that day I remember glancing at his chart as I walked out, I remember seeing these words that made me sick "DNR, His parents know he is dying."

I was stunned. I guess I didn't KNOW he was dying. I was hoping that the fact that he was hanging on and beating odds meant we might get to keep him. I was praying that I would take him home even if that meant constant doctor and therapy appointments, feeding tubes, and all that taking care of a special needs baby involved. I knew God would give me sufficient grace for each day and that he would bless our family with this little guy. My heart was breaking. My hopes disappearing before my eyes. Howard remained steadfast as always.

We remained in the hospital with Isaac as much as we could but eventually I had to be discharged. We enjoyed spending our time with precious Isaac and he was doing well. He was tolerating his feedings and was hanging in there. We were torn because though we loved being there with Isaac, we missed Luke terribly.

Luke was staying at our home with my sister Jillian and he was doing well, but we missed him and he missed us. He came to the hospital one evening and he got to hold his little brother and we got a family picture. He lit up when he saw his new brother. He was so excited.

So we were discharged to go home. I will never forget leaving that hospital without my baby. It was the most hollow I had ever felt in my life. As we took the long elevator ride down we were in the elevator with another mom who I had seen caring for her twins in the NICU. I remember her talking to the woman she was with and I remember it taking every ounce of restraint I could muster as she complained about not getting enough cigarette breaks because the babies were so needy not to grab her and shake her. I just wanted to scream. I was screaming inside but I stood silent. Howard gave me a look, he knew. He knows me. He knew I was holding back but that I really wanted to let her have it.

We got home and spent some time with Luke and then we called the NICU first thing in the morning to check on Isaac. He had had a rough night and was having seizures. They were upping his meds to see if that would help. We said we would be in shortly. When we got there he was agitated. You could tell he was out of sorts, but as soon as we spoke to him and held him he settled down. It was so amazing to see him respond to us. They told us he was probably unaware of anything because of his lack of brain development, but there was no doubt in my mind that he KNEW his mommy and daddy. We spent the whole day with him and at about 8 pm we came home to be with Luke.

How we longed to be able to spend time with both boys at once, but a NICU is no place for an almost two year old and Isaac was not ready to come home. It was so hard leaving him there though. We were so torn. We did the best we could at the time, but looking back I wish I had done more.

The next day was a good one. Isaac had done well with his new meds and his feedings were increased, we were still holding on to the hope that he would come home. We spent the day singing to him and telling him all about his family waiting to see him. We brought him pictures colored by Luke and showed him pictures of his big brother even though he NEVER opened his eyes. Again we made the trek home and again it was a tear filled one. I felt like I was being yanked in two directions and there was no way to win.

The next morning was July 20. We called the NICU before heading in just to be sure he wasn't having testing or anything and we spoke to a nurse who said he'd had a great night and that he was doing well. We packed the breast pump, lunch, a Bible, a tape recorder and some books and headed out. In the car I read stories to he tape recorder so I could leave the tape recorder with the nurses so they could play them to Isaac and he would hear my voice even when I wasn't there. I was parenting in the best way I knew how in a situation I despised. I was hoping for a miracle, but the doctors were very pessimistic and made it very clear that we should NOT get our hopes up.

I could not imagine a good God, a loving God would ask a family who had JUST been baptized to walk this road. I began to question everyhing I was beginning to believe in. If this was what it was like to walk with God, I wasn't sure I wanted any part of that deal. I remember telling God, "If you want me to believe in you, you have to give me something to believe in! I have done all of the right things and I do not want to let go of this baby. If you let me keep him, I will follow you to the ends of the earth." AAAAHHH Bargaining with God...we've all done it, but we all learn, that that just isn't how it works.