Heather Cole--A Journey of a New Kind

Post 1 of 4 by Guest Blogger Heather:

Last night I laid in bed unable to sleep--so many thoughts on my mind. Not one thought, not one particular anxiety, just thoughts. Frustrated, I decided to see if Netflix is Android enabled on my new itty, bitty Galaxy 3.6 Note. If Netflix was possible, I would bring up my account and find something to watch in bed. Really, the idea seemed incredulous. In my 70's childhood, I never even dreamed that someday I might be able to lay in bed and hold a three inch "TV" in my hand, minus any cords orantennae, and watch a movie!

But I did. I watched a movie that I had recently added to my instant queue--knowing it would be my "kind of movie." The clean, girly, sappy kind of movie. BBC makes the best!

Within the first couple of minutes I was in tears. Not just tears, but rolling, strolling down the cheeks kind of tears. This movie hit me on all kinds of levels, andekedopen a lid allowing months and months, not to mention years, of mom emotions to come flooding out.

Fourteen months ago, I delivered a beautiful five pound, four ounce, full term baby boy! Beautiful I say, but admittedly I was dumbstruck the first few moments after his birth because I wasn't expecting such a tiny baby! I had experienced gestational diabetes (due to my uhh, "over 40" status) and carried to 39.2 weeks. How could this baby be so small?

The birth happened so fast, as I knew it would. My first daughter, Maggey, came in only a couple of hours and I was warned this one, being the second, would come much faster. True enough. At 7:59am, while standing outside with my daughters waiting for the bus, my first contraction hit. Within minutes I knew I wasn't going to last long. I was scheduled for an induction the following day, but the Time was now!

I arrived at the hospital dilated to 7 and moving along fast...and in intense pain. At 11:21am Rhyse Addyson Cole was born.

The attending OB who delivered Rhyse was only in the room about 10 minutes from push to delivery--then he was gone. At that point the attending hospital doctors were in charge.

Rhyse's Apgars were good. He was small. But there was no immediate indication that something was very wrong . . . at first. But after being cleaned up and bundled up and smeared with eye cream it was time to attempt his first feed.

The feed didn't go well. In fact, Rhyse didn't give any indication at all that he wanted to suck. My daughter Maggey, seconds after birth, was like avacuumcleaner! And she still is! But Rhyse's first feeding and subsequent attempts completely failed. I had no idea at that moment that feeding was not only going to be an ongoing challenge, probably for years to come, but the medical package was only going to get bigger and bigger and heavier and heavier as the days drew on.

By late afternoon it was obvious Rhyse wasn't going to feed. Not terribly concerned the nurses informed me that babies are born with all the extra fluid in their cells to keep them hydrated in the first few days of life. If he went 24 hours without feeding, he would be ok. But that wasn't OK with me. I knew that a baby's natural inclination to feed was immediate. Not 24 hours later, unless something 

was amiss.

Exhausted and whirling from the birth and the high of delivering another baby (one of those, "over 40 surprise babies") I was so incredibly excited to add a boy to my pettite passel of two girls, Leah who was 8 and adopted from Kenya and Maggey who had just turned 5.

By evening a few family members had come and gone, husband went home to be with our girls, and I was left alone with Rhyse, ready to sleep--or at least make a valiant attempt. My husband and I had filled out our, "celebration lunch" form for the next day courtesy of the hospital, complete with steak and salad, and I was ready for a good night and a two day lay in.

The failed feedings continued until late in theevening increasing my anxiety, but midnight was fast approaching and I was beat with emotion.

A nurse came in to take Rhyse to his protocol blood sugar check, assuring me he would be back by my side in an hour. In two hours the nurse would wake me up for another feeding, well failed feeding probably. My lights were turned off. Finally.Though I trieddesperatelyto stay awake until Rhyse returned, Isuccumbedto sleep.

A few minutes before 5am the third shift Doctor walked into my room, turned on my light and startled me out of a deep, deep sleep and said he needed to "talk to me."

With blurry eyes and slow brain I tried very hard to make out the clock, look around the room for Rhyse, and look at the doctor all in one fell swoop. Through 

the fog I instinctively knew my life was on the verge of changing. My son never came back from the mid-night blood check, no one woke me up for a feeding, and doctors do not enter your room at 5am for any reason but to deliver unwanted news.

I will never forget his words. "Your son is very, very ill. His condition is deteriorating (failing to thrive) and his blood counts are bad. His white blood cell counts are in the 150Ks and bloodplateletsare 9K. The exact opposite of what they should be. There is one probable explanation for this: Leukemia. Your son may very well be terminal, but we are sending for an emergency transport to Helen Devos Children's Hospital (closer to my home than the hospital I was in). We are not equipped for this kind of situation."

The doctor walked out of the room and I never saw him again. His shift was over.

After all those words quietly slid out of his mouth I was overcome withnausea. I burst out of my bed and dashed to the bathroom and puked. No pretty way to say it. I had never tossed my cookies from emotion in my life: but now I have.

Alone and hardly able to talk I called my husband on the phone and told him to come now instead of later. Rhyse was sick. Very sick.

Within a very short amount of time my husband, Jon, arrived. We clung to each other for support. We have been through a few other intense circumstances in life together, and we were rooted deeper because of it. But this was every parents nightmare: something was wrong with our baby and we had no idea what the future held. This was more traumatic than anything we had ever encountered.

At less than 12 hours old Rhyse had already been moved to the "special babies" part of the nursery andhooked up to those soon to be all--too--familiar monitors. I could no longer hold him freely.

By 8 am Rhyse was transported by EMS to Devos Children's Hospital, and I was discharged. I could barely walk without intense pain, and I couldn't stand up straightat all.

Jon and I drove in silence to Devos:my mind didn't know what to focus on. I had already cried my eyes dry, how much more could I cry.

As we pulled in the parking ramp my husband very wisely said, "let's not let this tear us apart. Let's believe today is the worst day: each day will get better." With the Lord as our backbone, we promised each other no matter how painful this experience is going to be and no matter where it leads, we will be each other's strength, not enemies.

I had never been in the Children's hospital before. Devos had only been open for one year, a massive and picturesque building filled with the best of the best specialists. But the layout was confusing. From the very beginning we went the wrong way down one way lanes in the parking ramp and got turned around in the elevators. When we finally figured out how to get to NICU we were required to stand in line at a desk and show IDs and get permanent passes. A pass to see my son? It was surreal.

In intense angst we rode the elevator up to the third floor NICU. Using our new passes we were admitted into the unit, told we had to watch some sort of NICU etiquette video and upon every entry, scrub in. I understood the reasons for washing up to our elbows with each entry, but every second away from my son seemed like hours.

Mommy sonar is powerful. Even more powerful than I knew. As I watched the electronic doors open to the inner court of the NICU I heard my son crying, squeaking was more like it. I had only heard him make a noise a few times in the first few hours of his life as his tiny, wet lungs at birth didn't allow for much noise. But through the maze of rooms before me I instantly knew where he was. It was the most amazing sense of motherhood. We did not know his room number, but I walked straight to his room, following his noises.

Rhyse was all alone in the room, with many doodads and gadgets either strapped, taped or stuck to his body, and echoes of beeps and alarms sounding above him. I was overcome with emotion, and I cried, again. Only 12 hours ago I was still pregnant and greatly anticipating this new, little life. Now this precious little life was attached to something else: it felt like he was torn away from me and I was left wounded and bleeding.

About the Author:  Jon and I have three kids: Leah(9) who is adopted from Kenya, Maggey(6) and Rhyse(14 mos,PTNPII). We live in Allendale, Michigan. Jon is a materials supervisor at a small HVaC company, and I am a full time mom, working only four days a month as a CENA at a local nursing home. We enjoy a very close family relationship, and have found life with a NS baby even more enriching. The challenges are many, but we face each one head on together!