ted's story (part 2)

So Ted came home on Day 23.

 

Right at the beginning of winter. And flu season. And RSV season. The doctor gave me strict orders not to take him anywhere. Preemies, especially white boys (not kidding), struggle with lung development. And getting the flu or RSV was very dangerous. So we went to the doctors and we went to the River Ridge Church Office. At the time, it was in the basement of an old church. It was me, Matt, Ted and Alicia. He slept all the time. For months. So I took him there to get out of the house. But that was it. We didn't spend Thanksgiving or Christmas with our families. I didn't go to church for months because Ben led worship and had to be there. Thursday morning bible study was my sanity.

One of the best things about the NICU was that Ted came home on a 3 hour eating and sleeping schedule. And he could sleep through anything after all that noise from beeping hospital machines. 

 

 

Ted slept in a clothes basket the first couple of weeks. It was just easier to tote him around the house like that. He had a heart rate and breathing monitor that was attached to him for months. If he stopped breathing for too long or his heart rate went too high or too low, the machine would beep loudly in attempt to scare him awake or kick his heart rate back. It usually went off in the middle of the night. Usually when the leads were getting unsticky. I'm not sure if it was ever really for the real reason. But, then again, I'm really not sure if I want to know.

 

He came home on reglan for reflux and caffeine to stimulate both his heart rate and breathing. Ever purchased caffeine before? It ain't cheap.

They told us in the hospital that since Ted was 2 months early, he would do everything at an adjusted age. You think newborns at full term sleep all the time, check out a new born that's months early. He was never awake and hardly ever any sort of alert. Christmas Day I remember him being alert and awake for about an hour. It was awesome. If he had been full term, he would've been a couple of weeks old. He was coming along right on schedule.

The entire month of January Ted cried. It was miserable. We later found out he had heart burn. God bless our pediatrician who put him on liquid zantac and it cleared that issue right up. I also took him off caffeine cold turkey - not thinking he might have withdrawl from it. I'm sure that contributed some, too. We were at some sort of doctors appointment regularly. Weight checks. RSV shots. Eye doctors. Follow up NICU visits. I honestly don't even remember all of them.

Towards the end of January, I saw these two pictures and we took him in for a weight check. It made me so sad that he was still so small and pitiful looking. So the doctor decided that we should supplement with an extra calorie formula (also not cheap!).

The change was almost immediate. He grew before our eyes. And then he turned into a cute, chubby little baby. By the time we started taking him out in April, everyone wondered if this was the same kid. We spent a week in New Martinsville meeting all the family he'd never met. We got out into the real world. It was wonderful and freeing.

Sometime around the 3 or 4 month age, we started getting Birth to Three Services. We had a developmental specialist and a physical therapist come to our house once a month to measure milestones and make sure he was keeping up. Kellie, our PT, was a girl I had worked with before. So it was extra special getting to visit with her. That also helped with our cooped up time. Ted was late (even according to his adjusted age) on sitting. But once he got there he was good to go. He graduated from the B-3 program a little after he turned 1.

For the next 2 years, Ted struggled with his lungs. We were always doing breathing treatments and even a few hospital visits. It wasn't until we were finishing year 2 when I realized we hadn't used the nebulizer in about 3 months. That was our breaking point. Since then Ted has met every milestone and surpassed many. He's one of the tallest kids in his class and it's good to know that extra calorie formula hasn't had long term effects - he's a stick!

Anytime anyone has a baby early, all this stuff comes right back. Although a lot of it is a blur, a lot of it is as raw as the day it happened. That changed the direction of our lives in many ways. And I'm thankful for it. I never would've stayed on staff at River Ridge - that wasn't part of my plan. That was the only place I could take Ted. So I quit my other jobs. I'm darn thankful I did.

We paid off all of Ted's medical bills the right before Sophie was born. Young Life has the best insurance. I never had to fight with them or make phone calls b/c they didn't pay. It mainly ended up being two years of deductibles and out-of-pocket maximums. As best I can tell, he cost about $100,000 his first 6 months.

So Ted Tuel. There you have it. The condensed version of your first 6 months of life. Sorry I wasn't technologically savvy back then in the blog world. I had lots of time on my hands to have told way too much information about your life! You are a fighter. You are full of spunk. You are my not-so-little man. I love you!