Adventures with Superkid

If you've recently stumbled upon my blog, you might have come for some of the sewing or craft ideas I've been posting (my goodness, I'm getting full of myself, aren't I?).  It's only been in the last few months that I've had the time, energy, or inclination to do that kind of stuff, and it is fun to share that on my blog.  My blog actually began as an extension of the CarePages I was keeping for my two daughters, Superkid and Lily.  (If you want to know about CarePages, click here.)  Today's post is an update on Superkid and some of her ongoing health challenges.....so no crafts today!  (But I did make that twirly skirt she's wearing.)

Some of you are aware that Superkid was born with a heart defect called mitral valve stenosis.  Her own mitral valve only worked for about a year, by that time it was causing severe enough heart failure that it had to be replaced by an prosthetic (artificial) valve during open heart surgery.  Superkid's new valve puts her at risk for blood clots, so she takes a blood-thinning medication called Coumadin.  (You can read more about that here.)  The other tricky thing about prosthetic valves is that they don't grow.  Superkid's prosthetic valve has to be replaced as her heart outgrows it.  She received her second valve in December, 2008.  It looks like this:

As if that weren't enough of a challenge for one little person, Superkid has had to deal with several others, as well.  

Her heart failure was severe enough prior to her first surgery that she had to have a feeding tube that went directly into her intestines.  We used this at the time of her initial heart surgery to help provide her with additional nutrition and calories that she didn't have the energy to ingest by mouth, both pre and post op.  We used it for several months after surgery to help her get extra calories she needed to catch up.  We also used it for a couple of years following surgery to administer her heart meds, until she could handle taking them by mouth.  All that remains of her feeding tube now is a small, closed hole on her tummy, which Superkid refers to as "my other belly button."  Up until last year, Superkid was followed by a gastroenterologist for issues related to the feeding tube and what was thought to be reflux.  (Turns out what everyone thought was reflux was actually discomfort that seems to stem from pressure changes in her heart and fluid issues.)

A few months after her first heart surgery, we started to notice that Superkid's eyes didn't always track together.  This was diagnosed as an eye-muscle disorder called intermittent exotropia.  Corrective lenses helped a little bit, but the only permanent solution for this problem is--you guessed it--surgery.  Taking a blood thinner makes even the most minor surgeries very complex, so Superkid's eye surgery in June of 2009 put us in the hospital for a good two weeks--longer than her open heart surgery six months prior.  To give you some perspective, the eye surgery that she had is normally an outpatient procedure.  We continue to see a pediatric opthamologist to monitor Superkid's eye muscles and vision.

And then there are the migraines.  Superkid gets migraines.  Severe headache can be a sign of a blood clot or hemmorrhage in the brain--two things that Superkid is at risk for.  She's had a litany of tests (from CT scans to sleep studies) with the conclusion being that Superkid gets migraines for no obvious reason.  They are awful for here, but fortunately they don't last more than four hours (so far).  We are getting better at determining what triggers them: chocolate, excessive juice, sugar, late nights, etc.  She only gets them in the morning, so at least they are predictable that way.  So, we started to work with a neurologist on those.  

Pneumonia is another issue.  If Sariah gets a cold, it more than likely turns into pneumonia.  I've become pretty reliable at knowing when the pneumonia is starting: sometimes I can catch it before there is even much indication of it in a chest x-ray.  She's never had to be hospitalized for pneumonia, although it has sent us to the ER a couple of times.  Anitibiotics and breathing treatments always clear it right up.  It's just that she gets it sooooo often: three times between the first day of school and the first of December, this last year.  This year, her pediatrician turned us over to a pulmonologist.  Everything that was easy to diagnose was ruled out: her pneumonia isn't caused by heart failure, lung damage, asthma, or any obvious immune disorders.  Our pediatric pulmonologist, at a loss for any easy explanation, is sending us on to a pediatric allergist, to see if undiagnosed allergies could be the cause of her frequent pneumonia.

In case you are having trouble keeping track of everyone, here is a list of all the medical specialties we've covered, so far:

Cardiology

Cardiothoracic Surgery

Pulmonology

Neurology

Gastroenterology

Allergy

Opthamology

Infectious Disease (did I mention that Superkid is MRSA positive?)

Nutrition (went with the feeding issues early on)

Anesthesiology

Radiology (for all our xrays and assorted other procedures)

and we're about to add

Psychology

and Child Development

because Superkid just isn't picking up reading the way I hoped she would.  The motivation and desire are there,  but Superkid's frustration is increasing exponentially as we near the end of kindergarten.  When she asked me one day, after a particularly difficult reading homework assignment, "Do the letters jump around on the page for every reader, or just me?" I could tell that it was time to get some extra help.  I've read about studies that show children who have been on heart/lung bypass have an increased rate of learning disorders, so we're going to have some educational testing done.  Whether or not they make a diagnosis, I'm hopeful that through the testing we'll get some tips for helping Superkid learn to read in a way that works for her and her unique learning style.

The other specialty that follows Superkid is 

genetics and metabolism.  

Ever since Superkids was little, and we were dealing with new diagnoses of eye muscles and reflux, I've been asking our doctors, "Is there something else going on?"  I was always told that this was typical for heart kids; many children with CHDs have accompanying other issues that most doctors blame on their hearts.  After all, inadequate blood flow or poor nutrition due to heart failure can cause so many other things to go wrong.  

When our daughter Lily was alive, she had a lot of feeding and digestive issues.  A very bright, caring third year resident was determined to find a way to improve Lily's digestion, so she called on the metabolic expert at our children's hospital, Dr. Brian Hainline, MD, PhD.  He special interests are Inborn metabolism errors, molecular genetics of fatty acid metabolism.   I've been told that Dr. Hainline is one of only about five experts in this particular area of medicine within the United States.  Don't ask me what any of that means; I already feel like I have to get a degree in Chemistry just to be able to converse with him.  Since our first meeting with Dr. Hainline, I've decided that he is one of the most caring, engaged physicians we've ever encountered--in his own, unique way.  Dr. Hainline was able to answer a lot of the questions that we had about Lily.  The answers weren't easy to get, but the knowledge made us better able to care for and comfort her during the remainder of her time with us.  

Dr. Hainline also told me that he'd like to meet Superkid.  He was the first doctor to agree with me that Superkid's various medical issues might not be heart related.  In fact, he believes that many of the children who have CHDs and accompanying health issues aren't necessarily correctly diagnosed: he believes many of them have overriding syndromes that caused their CHDs and the other problems, rather than blaming the CHD for everything.  The problem with this radical concept is that science has yet to discover most of those syndromes.  Dr. Hainline had been able to determine that Lily had some type of metabolic disorder but had not been able to pinpoint which one prior to her death.  He has been working with Superkid to discover if many of her health issues are a result of a metabolic or neuro/muscular disorder.  

We don't have any answers, yet.  Initial tests have been inconclusive.  After our last appointment with him, in December, Dr. Hainline said that he'd like to review how Superkid handled the winter.  Would she miss a lot of school?  (20 absences and 6 tardies, so far, due to illness.)  Would she continue to have pneumonia and migraines? (Yes.)  Would she have a growth spurt?  (Not a spurt, exactly.)  How would she do at school?  (Not as well as we hoped.)  These are the things he'll be reviewing as Dr. Hainline considers our next course of action.  And this will take some considering.  If Dr. Hainline feels that additional testing is needed to make a concrete diagnosis, that testing could get pretty invasive.  We're talking muscle biopsy in a patient on blood thinners.  Not fun.  Painful.  And it is doubtful whether or not an official diagnosis would be helpful.  Treatment for many metabolic disorders is somewhat behind the scientific community's ability to diagnose them.  It's a relatively new field of study.

So, that's where we're at: between a rock and a hard place.

It brings our list of specialists we've met up to 14.  Looking on the bright side, Superkid hasn't had to be treated by anyone in 

Dermatology

Endocrinology

Oncology

Nephrology

Orthopedics

Otolaryngology

Plastic Surgery

Rheumatology

or Urology.

Am I the only one who is disturbed that our list of specialists we've met is longer than our list of specialists we haven't met?  I'm afraid that I've reached a level of experience at which I am obligated to go back and get a nursing degree.  Seriously.

Well, if you've read this far, it's probably only because you are related to me or because you can relate due to your own ongoing medical challenges.  I have to tell you that the reason Superkid continues to consider all her doctor's appointments to be social calls and the reason I'm not yet completely insane is because we have such an amazing children's medical center.  It is staffed by some of the most caring, sensitive, all-around nice doctors, nurses, techs, and staff.  Yes, we've met a few people along the way who didn't make our list of faves, but they've been few and far between.  As homesick as I get for the mountains, I don't know how I'll ever be able to leave these wonderful people who have given our entire family such stellar care.  If anyone reading this needs a recommendation for any of the specialists we've seen and lives in the Midwest (or is motivated to travel to get care from one of them) feel free to leave a comment with your email address.

Advocate

ad·vo·cate

  v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb,-cat·ed, -cat·ing, noun

–verb (used with object)

1.

to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

–noun

2.

a person who speaks or writes in support or defense of a person, cause, etc. (usually fol. by of): an advocate of peace.

3.

a person who pleads for or in behalf of another; intercessor.

4.

a person who pleads the cause of another in a court of law.

-from Dictionary.com

Excuse me for a moment while I climb atop my soapbox.

If you have ever loved someone, then you are aware that with love comes responsibility.  The responsibility to care for and protect the ones you love.  During the different times and seasons of love, sometimes this responsibility can be a heavy burden to bear.  Trying to care for and protect an adult suffering from the consequences of addiction is a very different experience than caring for and protecting a curious toddler who is constantly climbing and exploring.

I believe very strongly that part of this responsibility includes standing as an advocate for the ones you love.  As a mother, specifically, it is my responsibility to speak in support and defense of my children in regards to their needs.  While there are many social, clerical, and government organizations out there who share this mission, none of them love my children and know my children the way I do.  Therefore, none can be a better advocate for my children than I can.

Let me share two examples with you.  

Example A:  I had a conversation with a fellow mother who shared some of the frustrations and difficulties she was having with one of her children.  During the course of the conversation, we bounced ideas off of each other.  I voiced a few suggestions.  By the end of the conversation, the other mother had a plan of action.  She was ready to make phone calls, gather resources, find a helpful doctor.....she was ready to take action.  

Example B:  I had a conversation with another mother.  This mother also had frustrations and concerns about the behavior of one of her children.  I listened, and agreed that her situation was difficult.  I consoled her.  I voiced a few suggestions of things this mother could try and resources that she could seek in order to help her child.  For every suggestion I gave, the other mother had a reason she couldn't use it.  A book to read:  why should she read it knowing her husband wouldn't and then she'd be the only one using the disciplinary techniques?  A trip to the doctor: the child hated doctors and would scream the whole time, why bother?  A conference with the child's teacher: she just knew the teacher hated her child anyway, what good would that do?  By the end of the conversation, I felt as down in the dumps as my friend.  She thanked me for listening, and sighed, "I guess I'll just have to keep hoping and praying that my child will change."

Which of these mothers was ready to be an advocate for her child?

I hope you answered the first one.  Don't get me wrong, I believe in the power of prayer.  But I also believe that an integral part of faith is action.  Pray all you can for help as a mother, but for heaven's sake, jump up and DO!  

If you walked into the kitchen and saw your diapered darling climbing onto the top of the refrigerator, would you kneel in prayer and hope for the best?  Of course not!  You'd say that prayer as you rushed towards the refrigerator, arms outstretched, and you'd pull that baby down from his precarious perch and you'd tell him no and then you'd come up with some very creative way to keep that child from ever climbing up that refrigerator again.

I feel strongly that God has not left us to fend for ourselves.  He has given each of us gifts that give us insight and inspiration when we need them most.  We can access these gifts particularly in our roles as mothers.  Sometimes you just know that your child has a need that is not being met.  This is the time when you are called upon to use those God given gifts and act as an advocate for your child.

Talk to the teacher.  Go to the doctor.  Meet with the therapist.  Plead for the resources.  Join the support group.  Change the babysitter.    Look for the clues.  Research the diagnosis.  Bring concerns to the school board.  Learn the lingo.  Find the right doctor.  

These are the things that no one can do for your child better than you.

A fellow heart mom, Stefenie, shared a story on her blog she'd heard about another family.  Their son was born with a complex heart condition that eventually necessitated a heart transplant.  As a baby, however, he was misdiagnosed.  The original diagnosis?  Allergies.  Allergies.

Science is not perfect.  Doctors do the best they can, but they aren't able to spend 24-7 with each of their patients.  That's something only a mother can do.  And doctors don't have those God-given gifts that allow them to serve as the perfect advocate for each of their patients.  That's something else only a mother can do.

I'll admit, it took a while for me to step up to the plate and take on the role of advocate.  It's a skill that I'm still developing.  But I've improved.  

Before Superkid was born, I knew there was something about her that was different than my other children.  I was told, very clearly, that she would have physical challenges.  My husband received the same message.  We were so prepared for her arrival this way, that both of us were a little shocked when she received a 10 on her APGAR score, was handed to us pink and tiny and perfect, without any evidence of anything that set her apart from her healthy siblings.  For months, Superkid seemed fine--she just didn't get chubby the way my other babies had--but the warning I had been given was constantly there: something was different.  The pediatrician chalked it up to her having a different metabolism than her siblings......until her nine month well-child visit, when he realized that Superkid hadn't gained weight since her six month visit, and heard a faint heart murmur.

At that point, things happened very quickly, and my husband and I often look back on some of our initial experiences and decisions during the first few months of her diagnosis and second guess ourselves.  We think we could have been better advocates.  We sometimes wonder what effect different actions on our part would have had on Superkid's condition, and we've had to learn to forgive ourselves and recognize that we're all on a learning curve.  Some lessons have to be learned the hard way.

I guess my point is this:  if you have a genuine concern about one of your children, take action.  Pray for support and guidance and then get up and go find the help you need.  Don't wait for things to change or things to get worse or for someone else to come and diagnose and fix the problem.  Advocate.

The following video really doesn't illustrate how to be an advocate for your child.  I just feel like I'm supposed to post it on the blog, so humor me.  I came across it yesterday, while I was looking for another file.  It is 19 seconds of footage that my husband shot of Superkid and I, soon after she was diagnosed with her CHD.  At that time, we'd been trying to explain to our doctors brief "episodes" that Superkid was having.  They were very frightening to us, but never occurred in a doctor's office and the portable heart monitor Superkid wore for several days didn't detect any problems.  We shot this video to show to our doctors so that they could see what we were seeing at home.  As we later learned, the little noise Superkid was making is something called "grunting", a classic sign of respiratory distress and heart failure.  I believe that Superkid was admitted to the PICU of our children's hospital just hours after my husband filmed this.  If you ever see your child or another child breathing like this, you need to get them to a ER very quickly, and urge the staff there to take a chest xray to look for fluid in the lungs.  

Soapbox

Good morning friends!

I'm going to speak to you from atop my soapbox today.  I promise to keep it short.  If you have absolutely no concern for the welfare of children with special medical needs, feel free to skip this post. 

If you have read my blog before, you know that I am the mother of two children born with congenital heart defects.  Li'l Angel's combination of defects were incompatible with life, so she only lived on this earth for a year.  Superkid is six years old, and lives and thrives today thanks to a prosthetic mitral valve, a blood thinning medication, our beloved team of medical providers, and many miracles.

Chances are that we are not the only family that you have heard of who has been affected by congenital heart defects (CHD).  You may not have realized, however, that congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. 

Although many children--like my Superkid--now undergo successful heart repair surgeries, most will require special life-long care and face high risks of developing additional heart problems. Up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

One adult CHD survivor is Paul Cardall, a talented musician living in Salt Lake City, Utah.  Paul is a husaband and father who recently received a life-saving heart transplant at Primary Children's Hospital.  Paul is also the author of an inspiring blog, Living for Eden, and has become an activist in raising awareness about CHD and those who are affected by the #1 Birth Defect.  Today he posted information regarding his efforts to educate our country's lawmakers about a new bill coming before the Senate and House, The Congenital Futures Act. 

Paul Cardall meeting with Utah Senator Orrin Hatch.

Thanks to Paul for his courage and efforts to bring understanding to this overlooked issue. 

You can help families living with CHD by voicing your support for this bill to your own senators and state representatives.  By visiting the Adult Congenital Heart Association website, I was able to find the contact information for my own representatives and jet off emails to the three of them (there is a handy sample letter you can use to create yours) in less than thirty minutes.  I strongly encourage you to do the same. 

Please, please, help to provide a brighter future for the millions of children in America who are living with heart disease.  The risk factor for CHDs in any pregnancy is that 1/100 pregancies will result in a baby with a congenital heart defect.  With statistics that high, it is likely that if you aren't already the parent, grandparent, sibling, aunt, uncle, cousin, or friend of someone who has a congenital heart defect, then you will be someday.  I urge you to take a few minutes to voice your support to your legislators to improve the lives of children and adults with CHD.

Thank you!

Warning: Excessive Posting Occurring In this Jurisdiction

Yes, I admit it: two posts in a day is a tad excessive. Especially since I went, um, nine months between my first and second posts. But I'm enjoying this! (Hard to tell, right?)

Still haven't figured out the picture downloading stuff, and I don't dare try without supervision of technical wonderboy, B. It drives him nuts that I can't remember how to do this stuff after he shows me once. Good thing I'm around to keep him humble.

Anyway, after my two paragraph non-introduction to this post, let me tell you what I was going to tell you. (Drumroll please.....) I had my first call from the school nurse this year. About S.

Perhaps more explanation is necessary for anyone reading this who doesn't know us well. S's heart functions because of a prosthetic mitral valve that was implanted when she was a baby. (Actually, she's on her second prosthetic valve, the first was replaced last December.) The prosthetic valve functions because S takes a blood thinning medication, coumadin, that prevents blood clots from forming around it. Our blood is designed to clot around foreign objects, but in the case of a heart valve, you don't want a clot to form. So coumadin helps make S's blood extra thin. It also makes our lives very interesting.

Coumadin is notoriously hard to regulate. Many, many factors can change the way it works in the body. So we do regular blood work--usually at home, with our own machine--and I've learned to do the dosing depending on her numbers. S's numbers are all over, mainly because coumadin wasn't designed for children. But it is our only option, so we deal.

Coumadin can also be dangerous. When your blood isn't supposed to clot around an artificial heart valve, it doesn't do such a good job of clotting anyplace else, either. People who take coumadin are at an increased risk for bruising, bleeding, and (worst case) hemorrhage. This means that small injuries could have really, really bad outcomes if we are not completely on the ball. A bump to the head, for instance, could result in brain hemorrhage. Bloody noses can last, literally, for hours. Routine outpatient surgeries turn into multiple week hospitalizations. And minor accidents can cause bruising like this:

That is a picture of S, a week after she pulled a chair over that bumped her in--obviously--the eye. You probably wouldn't believe me if I told you that this occurred in the month of January, and in April of that same year my sis-in-law had to do some creative photoshopping to the SAME bruise so it wouldn't join us in the family portrait.

Above bruise was particularly nasty. We have been very, very blessed that our very active and fearless S has not had many other accidents like that one.

So, back to the school nurse. Imagine what it was like to face sending S to kindergarten this fall. I had been dreading the start of public school for well over two years. I was a little freaked about preschool, last year, but I had lots of confidence in the preschool I picked. The teachers were absolutely wonderful, and she only had eight children in her class. But kindergarten was a different story. Also a longer story. For the sake of brevity, let me just provide you with the barest details: principal resigned shortly before school started, school board thought they might save money by not hiring a replacement, decided to cut a kindergarten class, S was going to be in a class of 27 originally, board rethought previous decisions under pressure and hired a new principal and additional kindergarten teacher two days before school started!!!!!

Hey, I just looked at the clock. It is time to shut down the computer and have some Quality Time with my favorite (and only!) husband. This entry will be continued.......

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.