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Where Did You Go? The Extremist Extremes of the HOM Experience

By: Phil Roberts father to Ashley, and surviving quadruplets Benjamin, Casey, Danielle, and angel Emily

(published in SUPERTWINS Volume 16 #3 - December 2006)

 

The Highest High

kidsThey are all three so beautiful.

Benjamin rolls over from his tummy to his back, and flashes a big smile when he catches Mommy's eye.  Casey opens his mouth wide to laugh at Daddy making noises at him. And Danielle's bright eyes, when she sees her red ladybug, are reminiscent of big sister Ashley's smile from a year and a half earlier.
           

They are the three most beautiful babies we could ever imagine, now five months old and home from the NICU.  Despite whatever sleep deprivation we've experienced, we know that we have three times the blessing of the typical parents of a five-month-old baby.

This is the highest high of the HOM experience.  And we wouldn't trade it for all the world.  People who meet our children but who don't know our story excitedly exclaim, "Wow! You have triplets!  They're so cute!"  We nod and thank them for their kind words.

Yet They Aren't Triplets: The Dreaded Column

In early September, we were eighteen weeks pregnant with bggb quads, and had been through every imaginable high and low of a quadruplet pregnancy, including a move into a rental house in July and a move into a brand new house at the beginning of September.  And as September 14 approached, we were scrambling to get packed up to go to Arizona to finish the pregnancy and the NICU experience with world-renowned specialists there.     

Our first issue of SUPERTWINS magazine arrived. We were thrilled to stop packing long enough to read it from cover to cover. Thrilled, that is, until we came across the Lost Angels column and noted just how many babies had not survived the pregnancy or the birth or the NICU experience.  We were mildly shaken.

But we reminded ourselves that we were sacrificing everything and transplanting to Arizona so that we would do everything possible not to find ourselves in that category. And that logic pretty much dispelled any worries that we might have had at that time.  And besides, we had to get back to packing.

Black Friday

Friday, October 28 was the beginning of what we believed to be our seventh uneventful Arizona week.  We were two weeks past the all-important 24-week mark, with one excellent fetal fibronectin test under our belts and the second to be taken that morning at a routine doctor's appointment. Contractions were ridiculously few for this stage of the pregnancy, and we saw no reason-even if they started to pick up-why we wouldn't make it well into December, if not to our optimum 34-week date of December 26.
           

before birthThe doctor's appointment that morning was fairly routine, with an excellent ultrasound showing four healthy-looking babies (with the identical twin girls still showing no signs of twin-to-twin transfusion), and everyone close to the same size.  We found out later that the fetal fibronectin test taken that morning would come back negative yet again, a virtual guarantee of another two weeks of gestation.
           

But Lisa’s blood pressure at the appointment tested high, and proteins in  her urine were a second cause for some concern about potential pre-eclempsia. We were sent to the hospital's OB triage for the afternoon just to get things checked out.  We had no concept at that time that we would not be checking in until well after the babies were born.

The Longest Week

The afternoon of October 28th turned into a one-night admit, which then turned into one day after another of bad news turning into worse news.  The diagnosis was pre-eclampsia, which had not been a factor at all with our previous 40-week pregnancy; this time around, it was definitely there, and lab results indicated that it was severe.  The doctors braced us that they, as well as we, were helpless against this complication, and that we would be fortunate to keep the babies inside for even another week.
           

The prospect of eight more weeks of gestation was suddenly gone from our radar, as the "ideal quadruplet pregnancy" quickly digressed into a nightmare of swelling, fluid in the lungs, oxygen masks, anxiety, liver and kidney issues, and devastation.
           

Would our babies and my wife be okay?  The doctors and nurses had a busy week walking a very fine line between protecting my wife's deteriorating body, and keeping the babies in for as long as humanly possible. Two near-deliveries within six days yielded a definite plan to deliver the babies on Friday, November 4, exactly one week after our "routine" doctor's appointment, and on my birthday. We were scared, and yet optimistic. The babies all looked wonderful on the ultrasounds.

Really Wonderful and Tiny: the Week of Almost-Insurmountable Challenges

They came out one after the other: Benjamin Ronald at 1 lb. 15 oz., Emily Anne at 1 lb. 7 oz., Casey Philip at 1 lb. 11 oz., and Danielle Patricia at 1 lb. 10 oz.  As tiny as they were, they were incredibly beautiful, and did incredibly well with a few cries and no delivery room trauma of any kind.
           

My beautiful wife didn't do so well. Thirteen hours after delivery (delivery is often referred to as "the only cure for pre-eclampsia"), she was definitely not cured.  Everything that had been happening was still happening, and worse, and at 1 a.m. she appeared to have a stroke and to go into a coma.  Fortunately, she came out of this within half an hour, and was diagnosed a day later with peripartum cardiomyopathy, an apparently random post-pregnancy heart condition that takes the lives of 20-60% of those it strikes (and her case was on the more severe end).  Through the grace of God, the treatment she received in the adult ICU accomplished its goal, and she would bounce back completely. But five days were spent in the IC,  mostly in a fog, before she was able to even see the babies for the first time.
           

During that foggy period, two days after the babies were born, a call from the NICU to the adult ICU alerted us that Danielle was suffering severe bleeding into her airways.  The hard choice was made to tell Lisa about this even in her cloudy condition, with the sobering message that Danielle might not survive long enough to see her Mommy.
           

But Danielle did survive.  Barely.  She suffered a bilateral grade 3-4 brain bleed, with severe damage to her lungs.  On day six, after she underwent PDA surgery, her heart surgeon felt compelled to warn us that the surgery went well and that her heart looked fine, but that Danielle's lungs looked so sick that he wasn't sure that she would survive for long.
           

By the end of the week, we were grateful to all be alive, and we felt convinced that if Danielle could somehow overcome this, we would all manage to make it out of this experience fairly intact. But our cell phones were always on, and close by.

The Early Morning Calls

About ten days after their birth, when Danielle was stable and Lisa was home recovering, everything seemed to be right on track.  And then the phone rang around 4:00 a.m., Emily appeared to be suffering from some kind of infection; antibiotics were being administered immediately.  They wanted us to know.
        

We had an interview and pictures with a Phoenix newspaper scheduled for that morning.  We were advised to postpone photos and to meet with the reporter in another part of the hospital.  The babies needed solitude.
           

We arrived there that morning to find all four babies cordoned off in one corner of the NICU.  Emily had a dangerous infection called MRSA, Benjamin's skin was colonized with it, and the nurses who cared for our little ones wanted to be sure that it didn't leave our family and get spread to any other baby in the NICU.
           

The day was touch-and-go, but Emily seemed to rally.  The following morning, when I talked to the neonatologist who had first called me, she admitted that she was not certain that Emily would still be alive when she arrived for her shift that night.  We were shocked to find that things had been that serious-and relieved that she had bounced back.
           

Two mornings after the first early morning phone call, another one came.  This time Casey had an infection, and antibiotics were now being administered to him.  He had group B strep that turned into meningitis, leaving his future equally uncertain. The following morning yet another phone call came, this time alerting us that Emily had taken a turn for the worse, and that she had meningitis, and that the MRSA was back in full force.  We hated even the thought of our phone's ring tone.
           

As that week continued, Emily's condition worsened, and the two of us found ourselves on the edge of tears at every moment.  Her kidneys were failing, her brain had been devastated by the meningitis, her little body swelled up, and the danger of heart failure began to close in.  We have a very strong faith in God, and we believe in and prayed for miracles with all of the babies, but it seemed increasingly clear to both of us that we were not ever going to take Emily home from the NICU.

Saying goodbyeOn November 23, at 2:00 in the

afternoon, Emily did go home.

In a quiet garden just outside the hospital, we held Emily in our arms and sang to her and read from the Bible to her and prayed with her and kissed her and told her just how much we love her.  And then we told her goodbye.
           

A funeral service at the hospital was attended by some family and many of her medical caregivers, and was followed by the transport of her body to Georgia, and by a small graveside service attended by friends and their children.
           

Meanwhile, we pressed forward in the NICU there in Arizona, longing to get everyone recovered and home and to visit the place where our little girl's body was buried.

The Long Journey Home

Almost three months in Arizona passed after Emily passed, and then we were finally able to get Benjamin and Danielle discharged, and to get all of us on planes out of Arizona, one of which was a medical transport for Casey so that he could spend his last few hospitalized days in the NICU in Georgia.
           

gravesiteJust two days after Casey's full discharge, we loaded up the entire family in our newly acquired used conversion van, and we headed out together to the cemetery where Emily's tiny body is buried. There we placed three babies in three car seats next to her little grave, and big sister Ashley joined her little siblings as we told them through tears that their sister Emily was okay.  And then we prayed together.
           

A few days later, our third issue of SUPERTWINS magazine arrived.  This time, in that Lost Angels column that we had so desperately tried to avoid, we found Emily's name and story and a poem that we had written. We had come full circle.

Where Did You Go?

At this very moment, Mommy and some wonderful volunteer are at home doing bottles and diapers and cleaning up "'pit-up" (Ashley's term). And I'm sitting in a camping chair with a laptop computer in a quiet cemetery.  Tears are streaming down my face, because I'm not just the Father of Super-Twins.  I'm Emily's daddy.  And I miss her so much.
           

Every time I get here, I look at her little marker and the flowers around it, and I ask the question, as if she just might answer me:  "Where did you go, baby girl?" (It's not that I don't know exactly where she went.  I picture her very vividly in the arms of Jesus, having a much better time than she would if she were here dealing with spit-up and tantrums and mean boys and acne and heartache of various kinds.) I ask her rhetorically, "Where did you go?" only because I still just can't believe that she's not here with us.
           

And I would give almost anything to have her here, and to spare ourselves the grief and the decades-long journey home that we must take before we're reunited with her again someday.

Why Not Us?

The "Why us?" question never really goes away, as hard as we try to avoid it.  And it's one that has no good answer. (The futility and subjectivity of the question are even more obvious when we look at the big picture:  After all, why did we get to have any kids at all?  Why did we get to have four that did survive?  Why aren't we busy right now trying to go to China to adopt a baby from there?)

Maybe a better question is "Why not us?"

Why wouldn't we experience the heartbreak of losing a child?  Why wouldn't we get to fulfill every previous generation's expectation that they would have to bury at least one of their children at some point?  And why wouldn't we have something to give to the whole HOM and NICU communities that we wouldn't possibly be able to give if we had not experienced the pain of losing Emily?
          

seahorseWe are currently working on a memorial project in Emily's name that's called Project Seahorse (there was always a beanie baby seahorse by Emily's side, and it's in her casket with her body right now).  By the time this is published, you can find out all about it at www.projectseahorse.net.
           

We would never want to dwell on our loss to the point of losing out on the life that the rest of us have been given.  But at the right points along the way, we will continually work and cry and rack our brains and reminisce with her photos and do whatever it takes to keep Emily…from fading out of our family's memory. This kind of grieving is the lowest of all the possible low points of the HOM experience. But somehow this low point is also our family's greatest privilege.
           

Dad and babiesAs I get ready to pack up my computer and chair and drive back to join Mommy for the next round of diapers and bottles and 'pit-up, I am eternally grateful-as much as it hurts-that for nineteen days we got to meet and know and hold and love and celebrate the little girl who is Emily Anne Roberts.
           

For right now, her absence, and the place she has in our hearts, somehow make our highest points seem even higher, and make the future seem even brighter.  When Ashley says "Hi, Daddy" and when Benjamin and Casey and Danielle flash their chubby-cheeked baby smiles, I know that a part of Emily's mystery and innocence and legacy is right there with each one of them.  And with us.

"Where did you go, baby girl?" 

"Not so very far away at all, Mommy and Daddy."

See more about the Roberts Family, and what they are doing today.

 

Other MOST resources for bereaved families of multiples:

 

Updated 1/26/09

 
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