Tuesday, December 12, 2006

Part VII: A Waddle In Time

When the phone woke us up from a sound sleep at 2 AM and we heard the news that our baby boy was struggling for life ... the absolute last thing that we could do was roll over and go back to sleep. I could hardly control my breathing and thought for sure I was having a heart attack.

I remember a ringing in my ears ... I was freezing cold ... I was shaking furiously ... and I couldn't help but think that this was the worst nightmare imaginable. Was I still asleep? Was I dreaming?

I could not understand how our baby could be seemingly fine one day ... a bit fussy ... and then hooked up to a ventilator within hours.

What happened and how could his condition deteriorate so quickly?!

Before Charlie was off the phone, I was out of bed and dressed. I remember I had on a pair of ragged sweatpants and one of Charlie's worn sweatshirts, which I threw on over my pajama top and night-time bra. I pulled on a pair of wool socks and my sneakers. By the time Charlie was hanging up, I was standing by the front door with my pumping supplies in hand.

"Let's go."

There was no question that we were going to the hospital. I was going to stand by my baby all night long and look at his monitor, ask the doctors questions and make sure that I understood exactly what had happened and more importantly, what was being done to make our son well. I had to have SOME control in this situation and the only way that I could possibly have any resemblance to control is if I was there.

Asking questions.

Seeking to understand.

Touching our child.

There was no one on the road at 2:15 AM. It had just rained, again, and the streets glistened from our headlights. Charlie and I were silent on the drive to the hospital. Everything was quiet except for the sound of our tires on the pavement, the heat that was blasting from the vent to warm my frigid body, and our deep sighs and murmurings to God.

When we arrived at the hospital, we ran in to the lobby. We quickly picked up our NICU visitor badges, and acknowledged the sympathetic look from the night time guard. This guard had obviously been a member of the staff for a long enough period of time to know that parents don't come running in to the hospital at 2:45 AM without reason. Something obviously was wrong with our newborn.

We scrubbed our hands in the intermediary room and made our way in to the high-risk side. Unlike every other time I have visited, the NICU was quiet and dark ... except for a bustle of activity around one small bed. I could immediately see where William was stationed. There was a team of doctors and nurses administering various medications and checking his newly inserted IV's. Just then, a portable x-ray unit was wheeled up to his bedside and as the technician strategically draped our infant son in a lead cover, everyone stepped away while a series of images were taken.

Our baby boy, who just hours earlier had a pink complexion and was squirming around, was completely white and motionless. The adorable little outfit that I had dressed him in was gone. He was wearing only a diaper and was hooked up to a venilator. He had a nasogastric tube in place, that was pumping all the contents of his stomach into a bag next to his bed. He did not flinch as the technician rotated him to different positions for additional x-rays. He didn't cry when his heel was pricked for blood, or when the third IV was put in to his foot.

He didn't cry. But I did.

I felt so helpless. There was nothing that I could do except stand there, sobbing and praying. I have never before, and never since, felt so vulnerable. People have said that when you have a child, it is like having your heart on the outside of your body. And so it was for me that night in the NICU. I would have given anything to trade places with him. If only I could be the one there, fighting for my life. I was bigger, stronger ... he was just a tiny, innocent, 4-pound baby.

Time passed. I stood by William's bedside and sang to him. Over and over again, I sang and prayed. I touched his tiny little hand, stroked his blonde hair and told him that I was here and I loved him more than the world.

Eventually, I don't know how much later, our neonatologist came to my side and gently putting her hand on my shoulder, told me that I needed to get some rest. Charlie was in a comatose state in a nearby chair ... and I was in shock. When I furiously shook my head and told her that I wasn't leaving my baby's bedside, she told me that she had a place, in the hospital, where we could get some sleep.

Within a few minutes, Charlie and I were led to a small apartment like room, directly across the hall from the NICU. How I had not noticed these rooms before, remains a complete mystery to me. I obviously had tunnel vision during my previous 14-day visits to the NICU, up until that point.

I would later learn that these rooms are used for a variety of purposes. Primarily, they are used when parents are preparing to take their infants home from the NICU. If the child is going home on a monitor (i.e. apnea monitor) the hospital invites the parents to spend the night with their baby before they are discharged to insure that they have a good comfort level with an alarm that will sound at 5,000,000 decibels at least 20 times in the middle of the night. These rooms are also used for parents who like Charlie and I, have a seriously sick child in the NICU, and do not want to be too far away. Sometimes, the rooms are used by families that have just lost a child - and this gives them a private environment to say their goodbyes.

Within our room there was a bathroom, a microwave and sink, a table and two chairs, an arm chair and a twin sized bed. While Charlie used the restroom, I dove on to the bed, next to the wall - because I knew that if I was on the outside, he would knock me on to the floor as soon as he fell asleep. If there was one thing I'd learned in ten years of marriage, it's that Charlie is a reckless sleeper.

As soon as my husband's head hit the pillow, he was asleep and snoring loudly. Hours later, I still could not sleep. I dozed off once, but had a nightmare that our neonatologist woke us up to say that William did not survive and would we be willing to donate his organs. Realizing that there was no way I could sleep, I climbed over Charlie and out of bed, just as the sun was rising through our tiny window. Making my way back to the NICU, I caught a glimpse of myself in the mirror. I felt like death warmed over and sadly, in my oversized sweat pants and shirt, I looked much worse than I felt.

The NICU was quiet, even the area around William's bed. I drew up a chair and just as I was sitting down, the neonatologist pulled up a chair to join me. She told me that William's diagnosis was necrotizing enterocolitis (NEC), which typically occurs only with premature infants. It can strike suddenly and without proper medication, can be deadly. The good news is that they caught it fast and William was being treated aggressively.

The doctor reviewed the series of events that had transpired. Within a couple hours of my phone call to the night nurse, William had almost 100% green residual in his gavage tube from the late night feeding. Immediately following the realization that his stomach was not digesting my breastmilk, he began having bloody stools, his temperature dropped and he started having apnea and brady cardia events. Our nurse immediately clued in that there was a serious problem and called for the doctor.

It happened that fast.

While the doctor placed orders for antibiotics, they performed a series of blood work and called for the x-ray machine. William's c-reactive protein was elevated and the appearance of pneumatosis (bubbles) in his intestine were prevalent. The diagnosis of NEC was quickly made and treatment was immediate.

Our neonatologist, who by this point I absolutely cherished for her fast action, told me that they would continue to perform blood work to check his c-reactive protein, a good indication to how well his body was combating the infection. They would also continue with x-rays, several times throughout the day, to insure that the antiobiotics were working. If the pneumatosis perforated his intestinal wall, I was warned that emergency surgery would be likely.

As for now, we had to wait and see.

Around this time, Charlie had joined us in the NICU and was up to speed on everything that I had just heard. Our doctor took the two of us to the back of the NICU and popped William's first, second and third round of x-rays on the board. We could clearly see the pneumatosis that she had referenced, growing worse, with each successive x-ray. The doctor assured us that this was common and the response of the antibiotics would soon kick in. She then told us that one of the things that would help William to recover faster, is to receive a blood transfusion.

Without hesitation, I told the doctor that as a universal donor with my O+ blood type, I would go donate, right away. Alas, I was informed that because I had just had a c-section 2 weeks previously (wherein I lost over 2 liters of blood), I was not the ideal blood donor at that very moment in time. However, as it turned out, William and his dad share the same blood type, A+, which made Charlie the perfect candidate.

After picking Charlie up a cup of coffee at the small cart parked outside the hospital, we were off to the San Diego Blood Bank. On our way, I called my good friend and fellow triplet mom, Cheryl. When I was 12 weeks pregnant, one of our neighbors came running over to our house to tell me that she had met a mother of triplets at the local grocery store. I remember her gushing "What are the ODDS of meeting another set of triplets?!" Well, in our neighborhood with seven sets of triplets within a 3-mile radius, the odds are pretty darn good. But, neither my neighbor nor I knew that there was such a plethora of HOM's in the area ... so I was extremely grateful that she obtained this woman's telephone number.

And that's how I met Cheryl.

When Cheryl answered the phone, I couldn't hold back the tears. I was so exhausted and so afraid ... I unloaded everything that had just happened within the past 7 hours. The phone call at 2 AM, driving to the hospital, seeing our baby boy hooked up to so many machines ... the fear that he would need surgery.

The fear that he would die.

Cheryl, a devout Christian, sat on the phone listening to me and when I finally stopped talking, she prayed aloud. While I listened to her words, for the first time, since this whole ordeal began ... I knew that we were not in this alone.

While Charlie donated his blood on behalf of our two-week old son, I sat in the lobby and cried. I called my mother on her cell phone and left a message on her voicemail. Not due to arrive in San Diego for another week still, she was at the beach and probably out walking at that very moment. Within seconds of hanging up, my cell phone started ringing and wouldn't stop for the next several weeks.

Calls began flooding in from people that I didn't even know. But people that Cheryl, through her involvement with the church and community, knew. People that had children who had suffered NEC and had success stories to share. People who wanted to help in any way they could. Could they please bring meals? Cut our grass? Clean our house? Pray for us?

My day started out overwhelmed with the fear that God was no where to be found during our most dire time of need. This feeling of loneliness and helplessness soon gave way to a greater strength and outpouring of support than I had imagined possible. My spirits were literally lifted up to the heavens, by absolute strangers. The people at the blood bank, the people who called just to tell me that we were being added to their prayer circles. The e-mails that inundated my computer at home, the meals that appeared on our doorstep, and the cards and packages that began arriving, by the dozens, within days.

We returned to the hospital and resumed our place next to William's bed side where we continued to sit the rest of the day. Somewhere around 4 PM I realized that the reason I was in such excruciating pain is not only because my heart was clenched with fear for the well being our our baby boy, but because I hadn't pumped in almost 18 hours. For a woman who was pumping every 3-hours round-the-clock, going 18 hours was not a good move.

Returning from the pump lounge (where I expressed almost 50 ounces of milk within 30 minutes), I stopped by to visit the girls, who were being held and adored by Alex and Kathleen. I'm not sure that I ever adequately thanked Alex and Kathleen, but I am so appreciative, that while Charlie and I held vigil over William's crib ... they held Carolyn and Elizabeth, all day long. This was so important to me, because I was (and am) convinced human touch was the most important thing we could do for our premature babies.

Up until that point, our baby girls were doing remarkably well. But even their stretch of good health would be short-lived. And thus, Charlie and I came to understand what the "Preemie Shuffle" was all about. In all truth, it was more like a roller coaster ride to hell and back.

... to be continued ...

13 comments:

  1. Oh Jen, what a traumatic time, you must be exhausted from reliving this emotional time. Once again I am so thankful that I know the happy ending to this tale.
    I can not wait for you to finish telling us all about "A waddle in time". It is a remarkable story, told with grace and love.

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  2. This is so close to home for me! My triplets were born at 26weeks and 4 days gestation so we travelled the NICU journey too. Your post had tears welling in my eyes...

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  3. I really enjoy reading your blog as I am the mother of 3 preemies (singletons). The preemie shuffle totally brings back bitter sweet memories of the NICU!

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  4. Jen, I never realized that William battled NEC. I feared that most during our entire NICU stay. Everytime they pulled out the residual I panicked that something bad would come back. You are bringing back memories of our preemie shuffle too.

    Susan

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  5. Every time I read the next part of this story I burst into tears. Sometimes they are happy tears and someimes tears of sadness. Todays tears were of sadness and compassion. I can't even imagine how scared that you were. I know that the story turns out well, but my heart is so heavy right now. Poor Sweet William. And poor Jen!

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  6. PS-Anonymous was me, Linda (Chicago)

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  7. Dad and Kathleen12/12/06, 10:35 AM

    Dearest Jen:
    We remember every moment in NICU with you, Charlie and the children. The look you gave the nurse when she said "Oh he is just fine." A mother knows first and foremost.
    Poppa Alex remembers holding Charlie as he so helplessly looked in on his little William.
    Holding them this past weekend brings back memories and awareness of how healthy they are, now, in the present moment.
    Missing all of you.
    Joy to the World!
    Dad and Kathleen

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  8. I can only imagine what you were going through. It's so nice to hear that you had a lot of support along the way.

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  9. Jenna-
    YOU NEED TO WRITE A BOOK!
    Love, Lorie

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  10. oh Jen, I know he's better now, but I'm still crying. My favorite part is when you say that you felt that God wasn't there and then all of a sudden you were flooded by his angels. This post enlivens your soul and belief in humanity, it awakens you to our vulnerability, and reminds you the strength of parents and the amazing role that they play. You are such a gifted writer Jen you really are. As always, I'll be at the edge of my seat for part 8.

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  11. I'm half afraid to come back and read the latest in your story. Not because I fear the eventual outcome, but because your story is so emotionally wrenching.

    None of my children were ever premie, but my DH took me into the NICU when I was pregnant with my 3rd. I remember seeing a 20 weeker there who was just so amazingly tiny and vulnerable. As well as a couple babies who were in drug withdrawal. And no mommies or daddies in sight. (This was at a big inner city hospital in Newark, NJ.) I had to leave so I could weep in private. It just broke my heart. Your babies were (are) so lucky to have parents who so diligently cared for them during that vulnerable time in their lives!

    I will be back to hear more, I'll just make sure there is a box of kleenex by my pc!

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  12. Jen, I'm (obviously) reading this long after you posted it, and even longer after the actual event, and i must say, i'm very grateful thati know you have three robust, healthy toddlers!

    but i am crying as i read this. my heart literally aches for you and charlie to go through this, and of course, for your gorgeous, beautiful, amazing babies.

    can i just say again how glad i am this story has a happy ending?!

    you write beautifully and what a great story for the trips to read when they are older.

    once again- you are AMAZING

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  13. Hi Jen, thanks for the note of encouragement you left on my blog (Sullivan Triplets). I have been reading about your experience and loving it. I just finished Part VII with tears streaming down my face and for some reason Part VIII does not load. I am dying to read what happens next. Is there anyway for you to email it me? jburnssullivan@gmail.com. You are a great writing, I can't wait to read more.

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