Love: 400 Extra-Ordinary Days

At this time, three years ago, I was pregnant.  Expecting our fourth child.  We were thrilled to be having another baby.  We love babies, at our house.

During the twentieth week of pregnancy, my husband went with me to the obstetrician's office.  It was ultrasound day.  My husband was supposed to be on a business trip, but it was cancelled early that morning.  That was our first miracle.

The ultrasound showed that we were going to have a baby girl.

The doctor came in.  We smiled at her, and she didn't smile back.  Instead, she began to gently explain to us all the problems that our sweet baby's developing body already had.  It was a long list.  Two vessel umbilical cord.  Hydrocephalus.  Hypo-plastic left heart syndrome.  A possible fatal chromosome abnormality.

My husband gripped my hand.  We tried to ask questions.  We cried.  We already had one child with a heart defect--we had already experienced long days in the hospital and an uncertain future for one baby.  We had been confident that this baby--our last--was to be our miracle baby.  

We named our baby Lily, for the lilies of the field that Christ used so eloquently to teach his followers of our Father's love for His children.

We prayed.  We tried to make difficult decisions without the aid of concrete evidence and information.  We moved forward in faith, sometimes not sure if faith was enough.

Our Lily was born alive, another miracle.  She was tiny and perfect, without the facial deformities or extra fingers or toes or enlarged head that we had been prepared to love along with her.

I was able to see her, pink and soft and wiggly, before she was taken to the NICU.  In the NICU, she grew, her little body preparing for the first of three surgeries her heart needed to function.

For three weeks, we loved and fed and held our baby in the NICU, not knowing if her sweet, tiny body would be able to handle the complex surgery.  

It did.  Lily spent many days in the hospital.  What would be unusual for some families became the norm for us.  Picnics on the floor of a hospital room.  Walks through the halls with IV pump and monitor in tow.  Saying goodbye to one child so I could go home to do laundry for three others.

Things that others might take for granted, we celebrated.  Like Lily's first trip outside.  Wires, and tubes, and all.

Two months after her birth, we brought Lily home.  Another miracle.  One we hadn't dared to hope for.

The following days were not ever easy.  Caring for Lily at home, as joyful as it was, was also complex and exhausting.  She had frequent trips to doctors' offices, more surgery and more procedures, more hospital stays.  I learned to insert a feeding tube and carry a baby in a carseat, a preschooler, and an oxygen tank across a snowy parking lot and through the grocery store.  

We were so grateful for the people who stepped in to help us.  Family, friends, neighbors, doctors, nurses, therapists, strangers...all of them became part of the fabric of each miracle.

Lily's siblings could have been envious or resentful of all the time that it took their parents to care for their youngest sister.  But they weren't.  Their unconditional, unwavering love for Lily was nothing short of miraculous.  And they way she returned our love so enthusiastically was yet another miracle.

 

We had been told, when our doctors first diagnosed Lily's condition, that we should be prepared that our baby girl might not survive the pregnancy.  There were so many unknowns, so many steps into the dark. I realized, as my baby grew and kicked inside me, that each day she was with us was a miracle.  

There may be some skeptics in the world that say miracles have ceased. 

They have not.  I've seen 400.

Lily lived for 400 days.  

Many of those days were difficult, for her more than anyone.  

Many of those days were spent in a hospital.  But many of them weren't.  Despite the 200+ days Lily spent with her friends at the hospital, she managed to be at home for Halloween, Thanksgiving, Christmas, New Year's Eve, St. Patrick's Day, Easter, Memorial Day, and the Fourth of July.  She was at home for the birthdays of each of her family members.  She went on a family vacation.  She spent Valentine's Day and her own first birthday at--appropriately--the Heart Center.

More days have passed, now, since Lily returned to her Heavenly Father, than the 400 she spent on the earth.  Some days have been really hard.  We miss having Lily in our home and in our arms.  But we are convinced that we will be with Lily again one day, and we've learned that joy can still be present in our lives.  

I'm so grateful for each of the 400 extra-ordinary days that we spent with Lily.  

I'm also grateful for each day since.  Ordinary days that become extra-ordinary when I look at how far we've come, how far we have to go; how much joy we've tasted, and all the joy we have yet to taste; how much love we've felt and how much love we have yet to give.

This week is Congenital Heart Defect (CHD) Awareness Week.

This post has been linked to Tuesdays Unwrapped at Chatting with the Sky.

The Maiden Voyage: first posting

Welcome to my blog, "A Trip to *Holland"! As you may have guessed, this blog has practically nothing to do with vacationing in the Netherlands. The name of my blog is a reference to an essay written by Emily Pearl Kingsley, "Welcome to Holland", in which she compares the experience of raising a child with special needs to discovering that the plane you took for your much-anticipated dream vacation to Italy has instead dropped you off in Holland. (See the link underneath my blog header to read the entire essay--it is a fantastic illustration.)

Since my marriage eleven years ago, I've been blessed not only with a husband, but with four children, as well. My husband, B, and I were eager to start a family early on in our marriage, and looked forward to having a big family. (Four may seem big to some of you, but believe me, numbers are relative! We both grew up in families of six children, so six kind of sounded like an appealing number for starters.) Our eldest children, E and J, were born within our first four years of marriage. Despite some pre-term labor and c-sections, my pregnancies were fairly uncomplicated and these babies were healthy, chubby, power-nursers.

My third pregnancy was a little different. Morning sickness was a little rougher--maybe because I was trying to take care of a preschooler and a toddler and didn't have a lot of time to stop and rest. I had multiple kidney infections throughout the pregnancy, and had to take prophylactic antibiotics to prevent more of them.

During my third trimester, I had a moment of insight--an experience that I believe God gave me to prepare me for what was to come. I remember, very clearly, standing at my sink washing dishes, when the realization came that the baby I was carrying was different from my other children. The realization was almost a conversation: I asked, "how?" the thought came that that wasn't important, and then I asked what I should do. Very specific thoughts poured into my head, everything from preparing my husband to how I could teach my children to put away their toys more independently. Receiving this type of inspiration was--well, really difficult but beautiful at the same time. I felt grief and fear when I thought of the difficult road that I was going to be turning on, but at the same time I felt a great deal of love from my Heavenly Father. He was preparing me mentally, emotionally, and physically for the birth of this special baby, and I felt honored that I had been chosen to be her mother.

S was born 4 weeks before her due date and had a perfect APGAR score, especially considering she was born via c-section. She was more difficult to breastfeed than my other two children had been, but there weren't any other visible signs of S having special needs. However, my husband and I continued to feel that something just wasn't right....that it was only a matter of time before we would find out what was different about S. At S's nine month well-child visit, her pediatrician was concerned that she wasn't gaining weight adequately, and thought he heard a murmer when he listened to her heart. He referred us to a pediatric cardiologist at the local children's hospital. I remember several friends and family members trying to reassure me that lots of kids had benign heart murmers, and that S's would probably go away in a few months. I knew, though, that finding out how S was different from her siblings would begin at that cardiology appointment.

S was diagnosed at nine months of age with congenital mitral valve stenosis. In layman's terms, that means the smallest valve in her heart, the mitral valve, had a deformity that was preventing it from allowing adequate blood flow to the left side of her heart. Within weeks of her initial diagnosis, S began suffering the symptoms of heart failure. Her mitral valve was replaced with a prosthetic mitral valve less than four months after her initial diagnosis. S recovered well from her surgery, and now takes coumadin, a blood-thinning medication, to prevent blood clots from forming around her artificial valve.

Christmas 2005, just a few weeks after S came home from her heart surgery.

My husband and I felt like we'd had a few years to adjust to having a child with special medical needs by the time S was three years old. At that point, we really felt like there was someone missing from our family, and we decided to have another baby. We went into the pregnancy knowing a couple of things: that this would be my fourth c-section, so the pregnancy and delivery would be considered high risk and that there was a slightly higher chance that we would have another baby with a congenital heart defect. Heart defects are actually the most common birth defect, so every baby has a 1/100 chance of having a heart defect. Our fourth baby would have an increased risk, 5/100, since we had an existing history of heart defects. We really wanted another baby, and those odds didn't seem too terrible. My husband and I made a conscious effort to avoid chemicals and other teratogens for several months before we even began trying to get pregnant.

My first indication that all was not right with Baby #4 came at 14 weeks, when the results of the chromosome screening test came back slightly abnormal. They showed I had an "increased" risk factor for having a baby with a chromosome abnormality. Plenty of friends reassured me that they had been given similar results and gave birth to perfectly healthy babies. I tried not to worry. At our twenty week ultrasound, the doctor came in the room and sat down at the sonogram machine after the technician had taken lots of pictures. She told us that our baby was a girl. I'll never forget her next words, "There are some things I see on the ultrasound that concern me." My husband grasped my hand tightly. Then we were gently presented with what seemed to our ears a long list of problems: two vessel umbilical cord, a complex congenital heart defect known as Hypo-Plastic Left Heart Syndrome, a form of hydrocephalus known as Dandy-Walker Variant, possible facial and limb abnormalities, and what seemed to be a potentially life-threatening chromosome abnormality.

The next few days and weeks were painful and blurred in my memory by the tears I shed. I cried so often that my sinuses were overloaded and I came down with a horrible ear infection--nothing to compare with the emotional pain my husband and I were dealing with. I remember going to the family doctor to get antibiotics for my ears, and discovering that I couldn't bear to say anything beyond a chipper "Fine!" when she asked me how my pregnancy was going. (A high-risk OB was taking care of my prenatal care.) Spring was coming to the world around me, but my heart still felt like winter. Yet, it was difficult for me to show the world anything other than a cheerful face--perhaps my way of protecting what seemed like a very private kind of pain.

At some point, my husband and I began trying to learn more about our daughter's prenatal diagnosis and making decisions. Initially, her diagnosis seemed too catastrophic for us to offer anything beyond comfort care after her birth. We couldn't imagine her being able to have any quality of life. We read books about fatal prenatal diagnoses, learned about prenatal hospice, and even shopped for cemetery plots and monuments. We explained, as tenderly as we could, to our other children that their little sister wouldn't be able to live with us for very long. We let our children help us pick out a name for our baby, L, so that we could talk about her and pray for her by name. We prepared to lose our baby. We had to do that.

And then something changed. I began to get to know the little person who was growing inside me. I began to imagine other possibilities. And at some point, I recognized that the decision of how long L would be with us was not mine to make. It was herss. And L was letting me know that I should ask for the doctors to do things that would help her to stay with us for more than a few days. We got a heart surgeon. We got a neurosurgeon. We got a geneticist. And we got the promise that, if L could survive the pregnancy, they would do everything in their power to help her survive outside my uterus.

L was born in July of 2oo7, five weeks before her due date. She was beautiful and strong. I had prayed for just one day with my baby. By God's grace and the talents and abilities of a team of surgeons and specialists, we were blessed to have 400 days with our baby. L died in August of 2008, a little more than a month after her first birthday. Almost half of her life was spent in the hospital, where she had a devoted fan club of nurses, doctors, therapists, medical students, housekeepers, and others. But L managed to be at home for every major holiday (except Valentine's Day, which she appropriately spent at the Heart Center) and all of our family birthdays during the year of her life. Instead of being blind and deaf, as a neurologist predicted during the first days of her life, L showed us over and over that she could see, hear, communicate, and was very aware of the world around her and the people in it. She expressed her unconditional love for her family and caregivers in a variety of ways. Our family was richly blessed when L joined us here on earth.

So there you have it. In just a few short years, I've gone from being a mom whose biggest worry was where someone's sippy cup was hiding to being a mom who can recite complex medical history from memory, is able to perform certain emergency medical treatments faster than she can dial 9-1-1, and has designed a monument for her daughter's grave.

Has it been the journey I planned? Certainly not. But have I been able to find joy in this journey? Definitely.

If you are reading this, hopefully I can give you some sense of that joy, as well as the recognition that discouragement and frustration can be catalysts for growth and the realization of more joy. Life clearly is not all fun and games. But as one great woman once said, if we didn't know the pain, how could we know the joy? Buckle up and enjoy the ride with me, if you wish.