Zak's First Year

Today is Zak's 16th birthday. He's an amazing young man with an amazing story I'd like to share. It started 16 years ago today, just after 10 am, when he came, kicking and screaming, into the world.

Actually, it starts a week before when I had two false labor episodes and went to the hospital. Rookie move. By the third time, I knew it was real and spent most of the evening rocking in Grandma's bentwood rocker to help me through the contractions. I think Mike was working at a job that required travel or late nights or something, because he slept until I couldn't stand it anymore. I think it was around 1:30 am that I woke him up and told him we needed to go. The contractions were three minutes apart.

I had a bag packed, so we hit the road pretty quickly. I knew for sure this was it because it felt much different than the false pains I'd had. I remember we had the classic "pregnant woman in a car" moment. Mike came to a full stop at the light from Hwy 62 to Burkhardt and there were no cars for miles. He made the left turn on red and was promptly pulled over by a cop. The cop approached, saw us both freaking out and let us go.

What I remember of labor is squeezing Mike's hand and yelling at people. Then I remember hearing Zak scream. He cried and cried. I don't know why, but I kept asking if he was okay. Everyone kept saying yes, but I kept asking. It's like I knew something was wrong.

Something was definitely wrong. While most everyone went to get lunch, Mom stayed at the hospital to keep an eye on Zak. They told me they had to take him to the nursery, but Mom saw they put him in an oxygen tent. Before long, my doctor came in with a specialist to let me know something was wrong with Zak's lungs. When they tried to listen to his heart, it was mid-line instead of on the left. This led to a chest x-ray which showed that his left lung was overgrown and had shoved the heart over. Zak needed to be transferred from Deaconess to St. Mary's, where they had a more sophisticated NICU.

But that wasn't enough. St. Mary's realized his condition was out of their league and they ordered an ambulance to Riley Hospital for Children. Mike and his brother Chris (who lived with us at the time) followed the ambulance and slept in the lobby of the NICU. At 25 hours old, he had his first surgery, to remove the upper left lobe of his lung.

Zak had a congenital cystic adenomatoid malformation (CCAM). Instead of little air sacs, his lungs had overgrown sacs full of fluid. As soon as I was discharged from the hospital, Mom and I went to Indianapolis. We stayed a couple of nights at a Day's Inn, then we got a room at the Ronald McDonald House near the Riley/IU Hospital campus on the 11th.

Zak was by far the largest baby in the NICU. At full term (actually two weeks past my due date), he looked like a giant among the preemies. He was on a ventilator, IV, chest tube, oximeter, feeding tube and a heart and respiration monitor, but some skin still showed :)

Some milestones:
1/20 - IV was removed
1/24 - came off the vent for 3.5 hours
1/25 - removed his chest tube
1/28 - off the vent for three days. I got to hold him, change his clothes and rock him to sleep.
1/30 - started bottle feeding
1/31 - the surgeon surprised me with the fact that Zak may need a second surgery!
2/1 - echocardiogram. Zak's heart hasn't moved back to the left, but it's working perfectly.
2/2 - CT scan. There are cysts in the remaining left lobe. The right lung is too small - it was not allowed to grow but should expand as time passes.
2/3 - surgery #2. Removed about 20% of the remaining left lobe. Blood gases are already looking better. New chest tube is draining air from tissue until healed.
2/4 - I went to Boonville for the weekend. Yes, we'd been living in the RMC house for almost a month before I went home. Mike had been visiting every weekend.

Zak's first few months were tracked by very different milestones than other babies. First smile? I have no idea, but I can tell you what his ventilator settings were each day, as they tried to wean him off. Actually, I do have an amazingly detailed record of his weight gain as well.

2/12 - Zak got his fingernails clipped, and Daddy changed a diaper!
2/17 - 9 lbs 1 oz
2/19 - off the vent for 45 minutes
2/22 - bronchioscopy and off the vent for 10 hours
2/23 - ultrasound of the diaphragm

On 2/24, Zak had a tracheostomy that would let the vent attach directly to the neck and we could finally see his face! The doctors weren't sure why they couldn't wean him from the vent, but knowing that it would take a while, the trach would give him more mobility and less damage to his throat than the endotracheal (ET) tube.

I started to learn to clean around the trach and to suction the mucus out of his lungs. Before he could go home, I had to learn to change the trach too. I got to hold him even more and we even played on the floor. On 2/27, he started holding his head up.

March started occupational therapy. What kind of jobs does a newborn do? Well mostly they worked on getting him to swallow. Having had an ET tube down his throat for a couple of months means he has a real aversion to putting anything in his mouth. The OT must have started to make him tired; he slept all through the night on 3/5. On 3/10, he transfered to Lifelines Children's Rehab Hospital, which is now part of the St. Vincent network, and had his first tub bath. A few days later, Mike and I moved into a hospital room next door to Zak, and the hunt for an apartment was on!

Now the milestones look a little more normal:
3/22 - pushes up on his tummy
3/25 - brings his hands together
3/28 - enjoys his tub bath
4/6 - laughs
4/30 - first haircut
5/2 - discovers toes
5/16 - first cereal

On 5/19, he had surgery to insert a g-tube, which was an opening directly to his stomach. If he wasn't getting enough food by mouth, would could pour formula into his tummy without having to have a tube down his throat (via his nose).

On June 6, Zak moved into our tiny one bedroom apartment in Speedway, IN. Zak and his vent, feeding tubes, monitors, alarms and 24-hour nursing care. Also in June, he sat up with help (6/16), holds a spoon (6/24) and holds his bottle (6/26).

In July, at 6 months (7/8) he sits alone, throws a kiss (7/15), pats the table (7/17), eats with a spoon (7/20), pets the kitty (7/21), visits Aunt Katie (7/23) and waves bye-bye (7/29). We started bimonthly visits to the Riley Pulmonolgy clinic, and got one of the famous Riley Little Red Wagons. In August he got his first two teeth and started eating veggies. I think by this time we had only 12-hr nursing care, but that allowed Mike and me to get jobs. In September he started crawling and pulling up to the furniture. He ate his first fruit and drank from a cup. October brought Halloween, and he dressed up as Doctor Zak, which was completely believable with all the medical equipment he was still dragging around. He also learned to play peek-a-boo and throw his binky.

In November, he got two more teeth and we made the long trek to Nana's house for Thanksgiving. In December, he took his first step (12/13) and started standing on his own (12/21). He also started eating 'real food' like ravioli, hot dogs, mashed potatoes, scrambled eggs and macaroni and cheese. He walked all the way across the room on 12/29.

All through his first year, we never took any of his progress for granted. When we met with the Riley doctors, they said he should be off the vent by 18 months, and he was. He kept his trach for some time and was still tethered to the oxygen machine. By his third halloween though, I remember him walking through the neighborhood asking twick or tweet and barking back at dogs.

That doesn't mean he didn't have problems. On his first birthday, under the nurse's care, he decannulated (his trach came out). His vent didn't alarm because the tube was pushed against his chest. When Mike and I checked on him after we cleaned up after the party, I realized we were in trouble. I tried to use the emergency trach, which was a size smaller and it wouldn't go in. The tracheostomy was closing! I dialed 911 and argued with the paramedics to take us to Riley. The hospital got a double zero size trach in him, and all was back to normal.

I remember one winter when we were visiting Nana and he came down with pneumonia. Another hospital stay.

Today, Zak has a barely noticable scar on his throat from the trach. The surgery scar is about 6-8" long, but runs under his left arm. He likes to show his chest tube scars and tell people they are gunshot wounds.

Zak has few reminders of his rocky start. Besides the scars, he had asthma for some time, but now just battles allergies. He can't run for extended periods of time without getting winded, but he knows his limits. Zak is underweight; Aly is four years younger and weighs the same as he does. Oh, and the other lasting item ... Since Zak couldn't talk until he was off the ventilator (and then only with a special adapter for his trach), I swore I'd never tell him to shut up. I think I made it till the teen years, but by then he'd established himself as the family Zaklopedia. We like it that way.


Happy Birthday, Zakaroni & Cheese! You changed all of our lives in that first year, and I know you will someday change the world for the better too.