Battle scars

28 July 2010

I had problems with the hospital food. I had many problems. Since I had been a long-term resident, the dietician told me I could write in requests on the menu as long as they met my strict diet guidelines. She told me what foods they always had in the kitchen so I could request them at any time. I started doing this, but apparently, the people in the kitchen were unable to understand my requests. One day I asked for a green leaf salad. I got a big styrofoam box of spinach leaves. One day I asked for a baked potato. I got three raw new potatoes. This kind of thing was very upsetting to me. I’m sure I was nowhere near mentally stable at this point, but I was railing against the unseen cafeteria food preparers. I plotted ways to get back at them. I considered going down there and stuffing raw potatoes in their mouths. Fortunately for them, I was under close supervision. And fortunately for me, I had kind nurses who worked hard to make sure I had something decent to eat at every meal.

The nurses were the great comfort of my hospitalization. Doctors are great, but they never hang around for very long. Nurses are the people who make or break a medical crisis. They are the mamas who cared for me when my mom couldn’t be around. I got to know most of the nurses on the high risk unit. We watched tv shows together, talked about their children, laughed about different things, spoke disparagingly about the cafeteria staff, we just hung out. One nurse in triage told me that she liked working triage because she didn’t have time to get attached to her patients. I came through triage every time I had an infusion, so we saw one another constantly. She told me when I left she would miss seeing me and that we’d have to go hang out by the pool or something. Sadly, we haven’t kept in touch. I think of her every time I look at the back of my left hand. I have a scar from an IV she gave me there, just one of many marks left from my hospital “residency.”

Scars are things that some people, especially women, try to cover. By the time I left the hospital, I looked like I’d been in a fight with a porcupine, and I had definitely lost. I still have scars from many of my IVs. I have scars on my belly from the troker, and I have the ultimate badge of honor for any mom, stretch marks. I thought I was going to be in the clear on the stretch marks. My belly didn’t have a single one. I felt this was only fair since I had so many other battle scars.  What I did not realize was that stretch marks are not limited to one’s belly.  Let’s just say those nasty things literally sneaked up behind me. Oh the joys of pregnancy.

The stretch marks only added more marks of the battle. My belly had been a pin cushion for two months, so I had pin-pricks all over it. Every time I had an infusion, I would get a shot of Terbutaline in my shoulder, which often left a bruise. Oh, and did I mention I have an Rh negative factor, so I got Rhogam shots in the rear after each infusion as well. The diabetic diagnosis meant I had my blood sugar checked 4 to 6 times a day, each time meant a prick in the finger. One would think I would stay as far away from needles as possible, but the hobby I spent the most time on in my last few weeks of hospitalization…quilting. I guess you could say I was a glutton for punishment.

Eight years later, I still have many of these marks, and I would never dream of trying to cover them or have them surgically “fixed.”  It would be like trying to erase the past, and although this was a difficult time, erasing it would be like erasing a part of me, or worse, erasing Will.  Scars only exist on the living.  If a wound kills, it doesn’t leave a scar.  A scar is a sign of healing.  People who are scarred have been changed by something difficult and are living life on the other side.  When the resurrected Jesus presents himself to His disciples, he shows them the nail marks in His hands.  If Jesus stands on the other side of death with scars, there must be great beauty in bearing a mark for the sake of another.

What day is it?

19 July 2010

One problem with being in the hospital for a long time is that I lost track of the days. Every day was exactly like the day before. The only things that changed were the tv schedule and the menu. The hospital where I gave birth to Will had a menu that repeated itself every week, so if I was having succotash, it was Friday night. Needless to say, I didn’t like Friday night, but then again, I had an endless parade of food offerings to supplement the undesirable hospital fare. I was always marking days in my pregnancy and checking my charts to see how big Will should be and what developmental milestone he should have reached inside of me.  I remember a poster on the wall in my room that had footprints of babies at different ages of gestation.  It said something like, “Every day counts.”  In my pregnancy, I was marking the days, but as far as the rest of the world around me was concerned, it was as if time stood still.

After I’d spent a few weeks in the hospital in a private room, the nurse came in and told me I’d been upgraded to the private suite. Apparently, they gave the private suite to the person who had been on the floor the longest. Lucky me. It was nice because I had my own private shower and a refrigerator to expand my 7-Eleven stockpile. The room was slightly larger also.

I was in the big room when I reached 28 weeks. This is a magical number in every pregnancy because it is when they give the glucose challenge test to check for gestational diabetes. I failed the first test so they gave me another one. I had to drink this horrible sweet drink and then have my blood tested a little later to see if my body had processed all that sugar. Hospital lab schedules being what they are, they gave me the nasty drink at six o-clock in the morning. I drank it, rolled over and went back to sleep. I now believe that this was a big mistake. I failed the second test, just barely, but failure is failure so I was declared DIABETIC!!! (You should hear scary, horror-movie organ music right now.)

No more sugar for me. No more Krispy Kremes, no more Snickers, no more Tootsie Rolls, no more Little Debbie cakes, no more fun. About two hours after the declaration of horror, a friend of mine showed up with a massive cinnamon roll and a bowl of fruit. I had to fight back the tears. She felt really bad, but her other food offerings had always been met with great enthusiasm, so how could she have anticipated this?

The only thing worse than hospital food is diabetic hospital food. (Airplane food rivals hospital food, but airplanes go to fun places, so it doesn’t count.) Dr. Al-Malt cut me to 2000 calories a day. I tried to explain that this would shock my body and there was no way I could survive without my Krispy Kremes, but he was unshakable. Adam came in with a big bag and removed all the sweet treats from the premises. It was the meanest thing he ever did. I think I saw horns coming out of his head while he was stealing away with a nearly full package of Snickers.

Distracted by food. Shocking, I know!

15 July 2010

Ok, so that last post was pretty heavy.  You can push the tissue box back for this one.  I’ll go easy on you here.

Although we were very much living “life in the deep”, it wasn’t all serious.  I’m a big proponent of well-timed levity, and where better than an operating room to “infuse” a little happy chatting?  (pun intended)  The infusions took 30 minutes to an hour, so there was plenty of time for conversation.  And what do you think the favorite topic of a starving pregnant woman would be?  You guessed it, food.

Before each infusion I was NPO, that meant I couldn’t eat. I hated those letters. They’d post a big sign on my door at midnight and the morning breakfast cart would just pass on by. So while the infusion was going on, I was thinking about what any sensible, pregnant, eating-for-sport, nothing-else-to-do woman would be: what I would eat when I got out of there! Dr. Al-Malt, Melissa, Dr. Ricketts, Adam and I would talk about our favorite area restaurants. Everyone knew I was partial to Krispy Kreme and Taqueria Quetzalcoatl (just say “TQ” in your head if, like me, while reading you get stuck on words you can’t pronounce even when you don’t have to because you are reading silently.) Sometimes there was talk of black beans, but I am not a fan, so I tried to steer those conversations back to spinach queso or donuts.  In short, we managed to spend about 5-10 hours of OR time talking about food. It was a masterful way of taking my mind off the needles pricking me in the belly.

Also about this time, there was an event going on just down the street from me that I was missing.  Of course, I was missing everything because I was a patient in the hospital, but this event was particularly significant, more significant than I realized at the time.  In February of 2002, about six weeks before I found out all of this trouble was occurring inside of me, I signed on to speak at a women’s retreat to be held in downtown Orlando for a church from Lakeland.  I had a couple of connections from seminary to this church and they had received my name as a speaking candidate for their retreat.  I was very excited to do it, and even when I found out there was trouble with my pregnancy, I was hopeful that I would be able to manage the retreat somehow.  It was only when they locked me up in the hospital that I let them know I would not, in fact, be able to speak.  (Something they had already figured out from my previous reports of trouble.)  My contacts at this church were Gretchen, Tammy, Susie, Kathy, Tricia, and Kacey.  Some girl named Luchrysta filled in for me at the retreat :)  And even after bailing on them, someone named Creigh sent me a sweet e-mail about how she had been praying for us.  I later got a card in the mail from the women’s organization of the denomination saying they were praying for us.  I remember the name “Lucia” was on that card.  These mostly anonymous women had been pulled into the gravitational pull of “Will’s story,” and they would all become much more closely related to me in the next few months and years.

Life in the deep

6 July 2010

The pictures I saw on the sonogram in the OR meant the world to me because while my belly was playing pin cushion for Dr. Al-Malt, my mind was taken up with Will. I rarely looked at what they were doing to me.  I stayed focused on the sonogram, but Adam saw it all. He is the strongest man I know. In one intense picture, he saw his son in peril and his wife in pain, and he could do nothing to fix it. But he did do much to soothe it. He prayed for me constantly. He held my hand through everything, literally. I squeezed his hand with every stick of the needle, and he bore it without complaint. He would tell me what was happening so I would be ready without having to watch. He absolutely took care of me. What he did was beyond support, it was more like life support, but for my soul.

One day Adam showed up in my hospital room with his guitar. Contrary to the perceptions of some, my husband does not sit around serenading me with romantic songs on a regular basis.  In fact, most of the songs I hear him sing are nonsensical lyrics to familiar tunes.  On this day, though, he had written a real song about our whirlwind experience of parenthood. He pulled out his guitar and began to sing to me. I wish you could hear the deep emotion yet unimaginable strength in his voice as he sang it. It’s dated May 3, 2002. These are the words:

I dreamt that I fell in the ocean,

And sank to the floor of the world.

The current was swift and the water so cold;

The silence so heavy I thought I’d implode.

How I wish it were only a dream;

I’d wake up on dry land with sun in my face,

But the torrent and waves sunk my ship to the bottom.

I must find a way to get out of this place.

There is life in the deep of the ocean:

There’s hope in the darkest and coldest of worlds.

In the wreckage of all who have fallen before,

Who didn’t see the peace for their suffering souls.

The wreckage is full of their stories,

The ones who looked to their own strength to survive.

They swam for the surface, groping for air,

Struggling somehow just to stay alive.

But the fish are so gnarled and unseemly,

Is life worth the living at all?

Remember the one all forsaken;

In the deep you can just hear his call.

There is life in the deep of the ocean;

There’s hope in the darkest and coldest of worlds.

In the wreckage of all who have fallen before,

Who didn’t see His peace for their suffering souls.

This was the first time either of us expressed a concept I now try to emphasize to anyone who begins to pity us.  What we have in our wacky little family is life.  We are living, not dying, and in that moment Adam put into words something that was very important for us to remember.  We weren’t alone in the deep, and knowing our Savior had forged the path ahead of us is what kept, as I tell my kids, our heads up and our feet down.

The World Famous Will

30 June 2010

A lot of people have had surgery, so being wheeled into an operating room is not terribly unique.  However, being completely awake in an operating room?  That you don’t hear so often. Normally, the person laying on the table in the OR has been sufficiently drugged and could neither tell you her name nor what planet she’s living on. (This being the case, I have to wonder why they paint those clouds on the ceiling.) Anyhow, when you’re pregnant, they don’t give you very many drugs, certainly not any fun ones, so all of my 17 or so trips to the OR occurred with me completely awake.

This means, for anyone who has ever wondered, I can tell you what it’s like. First of all, I was happy to know how very seriously they take that whole sterile thing. People are scrubbed and masked and wear hats and all kinds of things to protect you from their personal germs. I also got to wear a nice hat, and Adam got to come with me. He became so familiar with the routine, he got his mask, hat and gown all by himself. He could drive my bed to the OR with no help at all, and he learned how to put the arm support on the operating table, which no one else could ever manage to do. After the first 10 trips or so, everyone figured that Adam and I could do these infusions all by ourselves.

I’m sure for the people in the OR, having a patient that was awake was one part annoying and one part entertaining. For starters, I made requests. “You’re leaning on my legs, could you stop doing that?” “Could you pull that strap a little tighter, I’m afraid I’ll fall off the table.” (They would sometimes tilt the table to get the best shot at the baby.) “Could I have another blanket, my feet are cold?” I’m sure they thought of drugging me, but everyone was always very nice and compliant. And anyone who has ever sat in a classroom with me also knows I was asking questions.  ”What’s that?”  ”Are you sending that for testing?”  ”What’s my amniotic fluid level?”  ”Do you think…”

As for entertainment, that really wasn’t me, that was Will’s department. Each time Dr. Al-Malt did an infusion, there was a sonogram of the entire event. At the first infusion, Will began to dance, but after that, he really became a ham. We called the infusions “filling up his pool.” Will would get so excited, it became a novelty to come in the OR while I was having an infusion to see what Will would do next.  There were always a few extra people hanging around and just watching. Will grabbed the needle several times. He opened his mouth and lapped at the fluid, as if to say, “I’m going to drink it all up.” He would play with the needle or troker by kicking it. And sometimes he simply waved. He was a movie star before he was born.

The hospital was not the only place Will was becoming famous.  His story was spreading beyond our friends in Orlando and family in Texas and Kentucky.  From my job, I had contacts all over the world.  When I began to have trouble with my pregnancy, I brazenly requested prayer from many of my missionary contacts.  Additionally, I had friends who had just graduated from seminary and had begun to spread throughout the U.S.  They also had global contacts and were passing along our email updates.  I know there were people praying for us in England, Zambia, Korea, and Mexico.  Will had gone global.

Doctor approved activities

22 June 2010

Although eating took up a lot of my time, I did find time for other exciting, doctor-approved activities. I finished a quilt I had begun five years earlier. I watched every episode of Trading Spaces, and I refreshed my memory on Brady Bunch re-runs. I watched movies that people would bring by, and I improved my crossword puzzle skills immensely. I played a really raucous game of Scrabble with some friends from church one night.  I even colored pages in a coloring book.  It took some work to stay entertained. Somewhere along the way, though, I got referred for physical therapy massage. Now this was the life. It still wasn’t quite the same as a luxury spa, but it was a pretty nice treat for a convalescent like me.

I also kept a journal and did a lot of praying. I would read Scripture and write my prayers. Here is my prayer from May 3, 2002

Lord, you are gracious and good.  You have given your son for ungrateful and impatient people.  Your love overflows the hearts of your people.  All that is good in me is because of you.  Thank you for the gift of my son.  I pray that he will be a blessing to you and a blessing to people all over the world.  Heal his body and capture his soul.

The last line, “capture his soul,” is one that I continue to pray for all my boys.  I also pray that they will be blessed and be a blessing to the people around them.  When Will began school a couple of years ago, I was very aware of how expensive it is to educate a special needs child.  He requires special teachers, therapists, para-professionals, and equipment.  He is a financial strain for the already struggling public schools.  So I prayed that wherever he went, he would be a blessing.  I prayed he would be a blessing to his classmates and a blessing to his teacher.  Within a week of the beginning of school, his teacher said, “Will is such a blessing to have in class.”  Sometimes God answers prayer with that much clarity.

Of course, I constantly prayed for Will to be healed, but I also prayed a few other things. One of them was really hard. When we were told that we would probably lose Will, it was the hardest reality I’d ever had to face. I knew it would be a wound much deeper than any I’d imagined, so I prayed that if Will were going to die, that he would die immediately. I did not want to face so many medical challenges and then watch him die in the delivery room. It was too much for me to bear.

Another of my prayers was that Will’s life would not be marked by pain. In our doctor inquisition, we heard more than once that Will could have serious quality of life issues. In other words, his life would be painful and awful and in the opinion of some, not worth living. My strongest desire was that Will would be a testimony to the Lord and His power. I knew that a life of pain would be full of sorrow, and I did not want that for my son nor as a testimony to my Lord. So I pleaded with God that this child would reflect His glory, His power, His presence, and His joy.

[Click hereto see a Lakeland Ledger article about Will from 2004.  The picture printed on the front page of the Sunday paper is at the top of the article.  The caption printed underneath said "Happiest Baby in the World," so I guess that makes it official.]

Eating for sport

14 June 2010

The very best perk of being in the hospital was the visitors that came. Now I understand that some people don’t like to have visitors while they are in the hospital, but I’ve always been a people-person, so the more the merrier. Of course, Adam came to see me every day. In addition to him, I had visitors from seminary, church and work. Our pastor became a familiar face to the hospital employees.  There was definitely a coordinated effort to make sure I had constant contact with the outside world.  Words cannot describe my appreciation for these amazing acts of kindness. My sister came into town for Mother’s Day, which was a big surprise. Adam even brought Tucker, our family dog, to the hospital grounds so I could come out and get some puppy love. Hardly a day went by that someone didn’t come see me. And when people stopped by, they rarely came empty handed.

Now, what would you bring to a pregnant woman who was confined to the four walls of a hospital? Krispy Kreme? Good answer. Snickers? Yes. Little Debbie? Nice choice.  Chick Fil-A? Six days a week. Olive Garden? Molto Bene! Tootsie Rolls?  Any size will do. Well, you get the picture.

When I was admitted to the hospital, the Tax Day infusion, I asked Dr. Al-Malt, “What can I do to make this baby as big as possible?” We knew he was going to be early, and that the bigger he was, the better chance he would have.  Our best hope was to get him to 32 weeks, still a full 8 weeks before his due date.

Dr. Al-Malt’s answer was one I’ve longed to hear repeated since that fateful day. “Eat calories and carbs.”  My response, “I can do that!”

Consuming calories and carbs became my mission.  I began eating for sport. The hospital provided me three meals and three snacks a day. Hospital fare is not known for its excellent quality. Breakfast was fine, lunch and dinner were usually pretty rough. This was not a problem though because my room looked like a 7-Eleven. I had food within reach at all times. Also, I had guests bringing me food almost daily. One day, some friends came in with tacos from my favorite taco place in Winter Park along with chips, spinach queso and a dozen Krispy Kremes. I ate the tacos, the chips and queso and then five donuts. An hour later I ate again. For my hospital snacks, I got high protein shakes to boost my calorie intake. Around 10 or 11 at night, I would cap off the day with a Snickers bar or Little Debbie cake. I tried not to go more than an hour without eating during the day. My conservative estimate is that I ate 5000 calories a day. I pushed myself to consume as much as possible.  Of course, I was doing it all for Will. ;-) Suffice it to say, I got pretty big.

A New Resident in the Hospital

9 June 2010

A normal pregnancy is 40 weeks. In Florida, when a baby reaches 24 weeks, it is considered viable outside the womb. Although I know babies born at 23 weeks who survived, Florida says you have to be 24 weeks, so I guess those little guys didn’t get the memo. Premies are cantankerous like that, always disobeying the rules.

Since Will was now officially viable, he was treated differently. I was treated differently. Dr. Al-Malt wanted to make sure I would be able to get the infusions when I needed them. The Tax Day infusion was too close for comfort. He wanted to check on me more frequently, and he didn’t want to risk me getting bumped. As an in-patient, we saw one another daily.

Hospital life could be rather dull.  Every day seemed to be just like the day before.  The residency was not without its perks though. I was on the high risk unit, so everyone on my hall was pregnant and trying to stay that way. Most of the women were confined to their beds, but I could get up and go to the bathroom and take a shower.  This may not sound like much of a perk unless someone has told you you aren’t allowed to get out of bed and take a shower.  Perks, like a lot of things, are relative.

I also got to go out for a “walk” for 30 minutes a day. Often Adam would take me in a wheel chair, but sometimes I would actually walk. We would go outside and sit in the little courtyard of the hospital. It was a very hot spring, so we waited until Jeopardy ended at 8:00 to go outside. There wasn’t much to see, but it was better than the four walls of my hospital room. Sometimes the nurses would let me walk around on the hall by myself. The nursery wasn’t far from my room, so I would go by and check out the new pink bundles for Will’s sake. We called it “scoping for chicks.”

My situation was very different from most of the other patients on my unit because there was nothing wrong with me physically.  I didn’t have high blood pressure, I was not going into premature labor, my organs, blood pressure and everything else were perfectly fine.  In fact, it was because I was “fine” that the troubles of my pregnancy had gone undetected for so long.  On the days I had infusions I was a little wiped out, but most days I felt perfectly fine.

Seven weeks.  Count ‘em.  From mid-April to the first week of June.  Here are a few analogies I’d like to throw out there to give you an idea of what that time felt like.  Have you ever seen the movie Ground Hog’s Day?  A little like that.  Add in a soundtrack of old grocery store music, you know, like 70′s songs played in a jazz flute arrangement (sorry Patty.)  Now imagine the climate inside a cave, where it is about 90% humidity but really cool.  And finally turn on the TV and see Bob Ross painting happy clouds.  If you don’t get it, well, I sort of didn’t get it either.

Tax Day

5 June 2010

On April 15th, 2002, five weeks after we first met Dr. Al-Malt, I went for a “routine” check-up. It was Tax Day.  We had become familiar with everyone in Dr. Al-Malt’s office, and familiarity goes a long way when you are facing something as terrifying as losing your child. That day, I sat down in the usual chair and Melissa started the sonogram to check the fluid level. I’m sure we were chatting about my sister who had just come in for a visit and how I had registered for baby gear at Target when Dr. Al-Malt came in and told us to go to the hospital. I needed an infusion that morning. My fluid was really low.

This was not terribly shocking. I went to the hospital all the time now. I knew all the nurses in Labor and Delivery triage, and we joked about the anesthesiologists acting like they used their own product. I would go in, they would start an IV (my least favorite part), eventually they would wheel me into the OR and do my infusion, complete with a shot in the arm of terbutaline to keep me from contracting, and I would go back to triage and wait for Adam to bring me a biscuit and jelly from the cafeteria.  This was our new routine, and even though it was an uncomfortable and expensive one, it was still a routine.  Like I said, familiarity goes a long way.

One problem we’d had a lot at the hospital was getting “bumped.” I was not considered an emergent case, so if someone else had a more urgent problem, they would get my spot in the OR, and I would have to wait. One night, Adam and I actually spent the night in triage waiting for an infusion. It was very difficult to get comfortable on a two foot wide gurney with only a curtain separating us and the influx of midnight laborers filing into L&D with reports of “my water broke” or simply “Ahhhh!” Afterwards, I told Adam it was like a horrible camping trip.

However, on this particular day, Tax Day, I did not get bumped. Dr. Al-Malt managed to find a small pocket of fluid and perform the infusion. When it was over, he told me he wanted me to stay in the hospital for “a little while.” Thus began my seven and a half week hospitalization. I was 24 weeks into my pregnancy with Will.

8 Years

3 June 2010

Eight years ago tonight, Will was born.  I won’t go into details about that night, you will get those soon enough in the story.  Instead, I will tell you about today.  Will’s birthday celebration included multiple wagon rides, fun with the bubble machine, music from the Beatles, opening presents with Grandma, Grandpa and Great-Grandma on ichat, friends and family singing happy birthday and LOTS of chocolate pudding.  It was a good day.

It is easy to buy presents for my other children.  They are quick to tell you what they want, and the trouble is always narrowing it down.  But with Will, I never know what to get him and I never know what to tell anyone else to get him.  He’s just so content with what he has.  He has a quality of “rest” in him that I do not often see, and certainly I don’t see it in the mirror.  I am grateful for my son.  I am grateful for his eight amazing years of life, and I am grateful for the One who teaches my heart through Will’s life every day.  Happy Birthday, Will!  I love you!