nate...part 2

Thank you to everyone for the positive feedback on Nate...Part 1! If you are just now joining us on this journey, you may want to go back and read.

Some of my memories are a little fuzzy, but I'll do my best to stay as true to the story as possible.

Soon after Nate's delivery, my nurse wheeled my down to the NICU to see him. Little did I know how familiar this place would become. It was so intimidating to see all the machines and tubes and wires. Even the sounds were intimidating. My dad joked that it sounded like slot machines in Vegas. (I wouldn't know...never been!)

Nate was on a ventilator to help him breathe. They put tubes into his umbilical stump to provide nutrients. He was stable and we could touch him and pat him, but he wasn't stable enough to be held. That was tough!

The doctors took him off the ventilator and put him on C-Pap, which provides oxygen, along with some pressure. Later they took him off C-Pap and he was just on oxygen through a nasal canula.

Nate, 2 days old, on a nasal canula for oxygen.

Later that day, back on C-Pap.

It seemed like we took one step forward and two steps back. Jeremy and I thought that he just needed some time and then would be ok.

He slept all the time. He didn't even open his eyes for the first two weeks. He was pretty pitiful.

The doctors were trying to figure out what was wrong with Nate. They did numerous test for genetic disorders and metabolic disorders. He had a spinal tap. An MRI. Ultrasounds. EEGs. And everything came back normal. Such a praise, but the doctors were puzzled.

One week old, back on the ventilator.

I didn't go back to work for the rest of the school year. I was working on my master's degree and my professors allowed me to finish when I could. They were so understanding. Jeremy was working and going to school at the time and was at the hospital as much as possible.

I got into a routine. I would take the girls to school and head over to the hospital. Jeremy would stop by between work and school. My mom and dad would come up about every day. We'd usually drive back home (about 30 minutes) for dinner and then go back after shift change for a couple more hours. The girls weren't even allowed to visit Nate because of the risk of infections. No children in the NICU during flu season.

During all this time, I was pumping breastmilk for Nate and had a huge stockpile! I felt like that was the one thing I could do for my baby.

We had a great support system. My family was great to help out with the girls and keep me company at the hospital. Our Sunday School class provided meals and money. Jeremy's parents were still living in California at the time. We called them frequently with updates and they came out for a visit around Easter. And we had countless prayer warriors.

Two weeks old.

We were so excited when Nate could start wearing his own clothes!!

Nate on his first Easter. At the time, he was in an oxygen tent, but we used the mask when we held him. He was fed breastmilk through an NG tube.

At 4 and a half weeks Nate was still having trouble breathing on his own. He required oxygen and would have frequent desats (when his oxygen levels would drop). He couldn't suck or swallow and didn't have a gag reflex. His muscle tone was poor and he had muscle tremors.
The doctors were stumped. Finally the decision was made that Nate would be transported to Children's Mercy Hospital in Kansas City.