Spin Me

My brother Nathan was serving in the army during the summer of 2002, in the early days of the Iraq war.

Day and night I worried about that kid. When reports of dead American soldiers flashed across the television, I would strain to see if it was my dear old red haired crazy brother.

His homecoming was as grand as it could be, and every heart lifted a little bit when he hopped in his black BMW Z3 convertible to hunker down at mom's for a few weeks.

The Hudsonville Fair is a time honored VanderPloeg tradition. Barns full of animals, carnival rides, and sticky cotton candy represented the final hurrah before school started.

Nathan and I decided to go on kid's day that year. A 23 and a 21 year old, riding all the carnival rides amongst the sea of blond haired, freckle face young 'uns.

It was a blast.

The ride pictured above was a favorite growing up, so Nathan talked me into to riding it with him.

We sat down on the metal seats, and I uttered eight words that I would soon regret.

"Please don't spin us. I get terribly sick", was all the carnie needed to hear before clanking the door shut and spinning us Price is Right style.

Over and over and over he spun our cart. We were going so quickly in a circle, my eyes starting losing focus.

I could feel my stomach churning and immediately I was regretting that warm, gooey elephant ear.

On round 20, I was literally screaming for him to stop.

I can still see the mischief on his face as his hand pushed the bar to spin us again and again.

I really think this, as opposed to a roller coaster, more accurately describes our NICU journey.

As time goes on, your so dizzy that you cannot find which way the sky is, and all you want to do is throw up.

Saturday night, I could tell Tessa's breathing sounded funny. Her nose seemed clogged, which is detrimental to these little nose breathers. It is hard enough for her to breathe on her own without one nostril clogged.

She fought and fought all day Sunday to keep her saturation levels up.

Monday, when the doctor rounded, I asked him to put her back on CPAP, since she was retracting pretty consistently.

Her respiratory rates were still pretty good at that point, so she stayed on room air and we listened to the dinging all day as she de-sated.

Monday night rolled around; even Rachael immediately noticed her pale appearance and difficulty breathing.

She drew blood for a CBC, which showed that her hemoglobin was low. The decision was made not to do a blood transfer that night.

Tuesday morning, I went to her bedside early to make sure I caught rounds. Dr. Gelfund came in, and we spent forty minutes talking through all of her issues- the nose being clogged up, my apprehension with NEC associated blood transfusions, if a possible milk allergy was causing the anemia.

A bunch of different tests were run; each one came back normal.

Dr. Gelfund said that Tessa was in need of a transfusion, and it would perk her levels back up so she wasn't so worn out. He suggested to hold her 2 pm feeding, on the off chance that would help keep NEC from occurring.

I guess a good explanation of NEC is probably in order, but I am not exactly an expert on it. NEC is a condition in which the intestines begin to die. The bacteria start attacking the intestinal wall, which can lead to a perforation. There are varying degrees of severity. In the most extreme cases, a baby can be completely fine one day, and die within hours because the entire bowel wall turns to acid.

Premature babies are always at risk for NEC. As she got older, her risks were decreasing with each additional day. Dr. Gelfund knew how against the transfusion I was, and came touting research on babies her size.

At DeVos, they generally only see 2-3 cases per year in babies over 2 lbs, 2 ounces at birth. Very few over 32 weeks. Normally NEC appears in the first two to three weeks of life. Almost always when full feeds are established (she had been on full feeds for weeks).

They also cross checked the number of NEC cases within 48 hours of a blood transfusion. In the past 2 years, only 2 have presented after a blood transfusion.

I told him to go ahead, but warned him that "we would have words" if she contracted NEC.

Night rolled around, and Tessa was a lethargic. Not terribly alarming considering the amount of poking and prodding she endured.

But, mamma knows best, and I just had the feeling that something was off. I called 3 times between the time I left at midnight and 5 am.

Josh arrived at 8 am. She was agitated, but not overly so. She had a 3 ml residual from her last feeding, which sent off a tiny alarm bell for me. Tessa never has residuals anymore.

At two, I went to change her diaper. It was bloody, a tell-tale first sign for NEC.

I asked the nurse if she thought it was bloody.

"I've seen worse", she said.

I asked about her 8 am stool, and she told me that also looked a tad bloody.

"I wouldn't worry about it", she said. "Her stomach looks normal".

She wanted to go ahead and feed her, which I had previously read would make NEC worse.

"Would you mind sending it down to see if it was blood and informing the doctor?" I asked her.

She called Dr. S, the on call neo, who again advised to push the feed.

At this point, I was doing skin to skin with Tessa and she was acting so uncomfortable. She would not relax and kept squirming around and flexing her stomach.

I knew it was her belly.

I told the nurse again that I was really uncomfortable with feeding her. With all that was going on, I wanted to see a neonatologist. Preferrably Dr. Gelfund.

After making me feel stupid, arguing with me that she had already called Dr. S and got his decision, and pointing out that Tessa had no other signs of NEC so it would be fine, she took a sample of the stool.

As I was crying (the ugly cry, mind you), I heard her slam the trash lid down and leave the room.

And didn't come back for an hour and a half.

Now, that is fine if Tessa was in her bed, but she was laying on my chest. It is really difficult to navigate lifting up the top to her isolette and putting her back in there safely with all the cords and wires attached to her. The two CPAP tubes are really heavy, so if they hang unassisted, they pull on her little nose back and she screams in pain. I almost never do it by myself because there is so much to work with to get her put back correctly.

After fifteen minutes of finagling cords and wires, I finally swaddled her back up in her blanket. I was leaning over her, trying to comfort her, and whispering "I love you" as Dr. Gelfund came in.

He took one look at her stool and told the nurse to discontinue feeding her until we got more bloodwork and an X Ray.

The X Ray came back normal fairly quickly, but it took about an hour to get the bloodwork back, confirming that she had elevated CRP. He bumped her from suspected NEC to probable NEC.

It would take 24 hours to know what the disease was going to do and how aggressive it would be.

Josh and I watched the clock as night dragged on. My parents came up to sit with us. Our pastor came in and prayed over her.

Another X Ray was taken at 11 pm, which did not show progression of the disease. The 6 am X Ray showed "gassy bowels" but no bubbling of the lining (thank God!)

We have another XRay and more bloodwork planned for tomorrow morning, which we hope will show NOTHING new.

Tessa, Grandma, and I had a very tough day and night, since she is not allowed to eat for the next 7-10 days as the antibiotic kills the bacteria threatening her bowels.

As for her nurse, vindication came as Dr. Gelfund left the room after we got the official diagnosis.

"You didn't hear it from me, but I am SO glad you did not let them feed her" he said, as the nurse stood by.

Two of Tessa's primary nurses were on yesterday, which was a God thing. Jude takes care of her most of the week, and took over when things got rough yesterday. Tessa wasn't even her patient, but she was sitting along side us holding our hands, reminding us God would take care of Tessa as He had done thus far.

She prays after every shift for an hour at a Catholic church downtown, and as she left she told me "You know where I go after I work, right? I will devote the entire hour for praying for Tessa."

Thankfully, our other favorite nurse came in (many of you know her- Rachael Brinks:-) and helped us stay sane through the night. She had been keeping track of Tessa's downward progression since her shift on Monday night, and helped me through the toughest night yet.

She is so on top of everything. I never feel like she cuts corners or takes her job lightly.

I feel bad because I have complained a lot about the nurses lately. The thing is, her primary nurses have spoiled me. When you have a great nurse, and then get just an okay one....you can tell the difference immediately.

Overall, my biggest disappointment is that I feel like we are back to square one. Tessa cannot eat for 7-10 days, and then her feeds will slowly be reintroduced. We were already on full feeds, I had breastfed her, and felt like we were making progress.

In general, they said having NEC adds on about 2 weeks to her stay.

2 more weeks of cafeteria food.

2 more of non-stop fast food.

Two more weeks of not being together as a family.

Two more weeks of waking in a panic, wondering how she is.

Two more weeks of not feeling like the mom I want to be.

Two more weeks of feeling pulled in every direction.

Two more weeks of driving back and forth.

Two more weeks of missed bedtimes, trampoline jumping, and cuddling in bed.

Two more weeks of not seeing Josh.

We are incredibly (immensely!!!) grateful for the miracle she is, but today I ran out of steam and needed a pity party. We have been here ten weeks already, and two more weeks after October 1st feels like a long time.

Thank you for all the prayers offered on behalf of Tessa. We are praying with everything in us that the infection is minimal and this is just a setback. It could so easily turn into something major.

Please pray for the Great Healer to keep His gaze on our Tessa girl.