Thursday, February 1

Dear Elizabeth,

Another new month, another new round of doctors. I arrived early this morning to meet with the new NICU fellow and to say “hello” to the neonatologist of the month as the doctors did rounds.

I already know the fellow, Dr. Silvestri, from time she has spent in the unit over the last few months, and she and I have a good relationship. Because you are making steady improvement, the doctors have told me that you may be moved sometime this month to the Progressive Care Nursery, a unit downstairs where babies go as an intermediate step while they are getting strong enough to go home. I didn’t even know the Progressive Care Nursery (PCN) existed. Although I am excited about the prospect of your graduating to this unit, I can’t imagine starting over with an all-new team of caregivers. The NICU has been our home for a long time.

Your breathing continues to be good, although we have to be very careful with you. You have had a few spells of apnea and bradycardia, especially when you have been tired out. Too much drinking from the bottle exhausts you, and your alarms go off. We have been cautioned not to keep you too warm or overtire you by holding you because you may end up sleeping too deeply and forgetting to breathe.

Yesterday, Diane and David, friends of ours from Florida, came to see you. You were tired so you would periodically forget to breathe and start to turn blue. Several times during our conversation, I glanced down at you, noted your color, opened your incubator, shook you slightly, and said, “Elizabeth! You need to breathe. Breathe, Elizabeth.” Each time, you picked up your breathing and turned pink, and I went on with the conversation, barely missing a beat. Although this has become routine for us, I’m sure Diane and David were nonplussed. I keep forgetting how scary this can be to people new to the NICU.

Friday, February 2

Elizabeth,

When it comes to your eyes, no news is just that: no news. Dr. Lucas saw you this week for the second time since your surgery. You are at Stage 3 and holding; the hope is that eventually your eyes will return to Stage 1. He emphasized that it is still too soon to know whether your vision will be adequate or whether the Plus stage will return, with the risks of retinal detachment. He hopes to know more next week when he examines you.

I can deal with the facts, Elizabeth, but I hate the uncertainty. Sometimes, this state of suspended animation is tough. I’d rather just know where we stand. Tell me the truth and I’ll deal with it.

On the other hand…

I’m scared to death of the truth. What if you can’t see? Can’t see us, can’t see the willow in the back yard, can’t see the ocean? Can’t read a book, can’t ride a bike, can’t drive a car? “Can’t,” as Pam helpfully puts it, “get married”?

Yes, I know sightless people enjoy books and happy marriages, but still. It’s not what I would choose.

Elizabeth,

Okay, I know I don’t get to choose. Some warped part of me has always thought I could at least submit a request. I felt that God and I had worked out an understanding: I would do the foot work, be a good soldier, not tread on others, and not bug Him with the small stuff. If I managed most of my own problems sufficiently, He would be there for the Big Issues and would, after reviewing my record, heed my prayers. Definitely a quid pro quo theology.

And I thought I had the prayers worked out. I say grace and evening prayers, but I have to admit that I don’t have a rich, regular dialogue with God. Others in my family do, and I have tended to delegate my prayer life to them. We’ve often joked about giving our most vital prayers to my grandmother, because she has a direct line to God and can represent us well.

Over the months of your hospitalization, I have been so relieved that others are praying for you, sure that their intercession will do what I cannot. I can’t find the words.

Your father can. Every night on our way out, we stop at the hospital’s chapel. We usually have the room to ourselves. A Bible placed on a pedestal sits in the center of the room, and I scan the open chapter, searching for a sign. Your father sits quietly and waits for me, then we both approach an abstract weaving, a vague sort of cross, on the wall. Your father clasps my hands and speaks for both of us.

He prays simply and briefly and completely from the heart. No carefully articulated praise, no humble petition. Just a talk with God.

This is a side of him I have never seen. He wasn’t brought up in the church, didn’t attend Sunday School, doesn’t attend church with me. I, for all my upbringing in faith, am speechless. And so grateful to him for his prayers.

Saturday, February 3

Dear Elizabeth,

This morning, I broke one of my favorite teacups while I was putting it away, and I just lost it. I felt as though I had splintered into pieces along with the cup. Your father thought I was nuts: all this over a tea cup?

Well, it’s not just the cup. It’s everything. I find that I am handling the big things pretty well, but the little things send me over the edge.

The same goes for my daily routine. I can deal with things like restarting your breathing, but the tasks of making dinner, picking up the dry-cleaning, and paying bills wear me down. It is all necessary, but so irrelevant.

This business of living a life in the NICU is a lonely ordeal, isolating me from friends and family, even from your father. People with good intentions tell me that I need to make time for me, go out to dinner, get my life back. How can I? Even though you are doing so well, I feel as though we’re in a constant state of emergency.

I find myself mildly shocked that the people around me are going on with their lives. I am fortunate to have the caring relationships that I do, and I’m not sure what I expect of people. I do know that what I want no one can give me.

Sunday, February 4

Elizabeth,

I clearly am losing it. This afternoon, I slipped out of the hospital for a quick trip to the library to nail down a few facts for a section of the book I am working on. On the way there, I remembered I needed to call Aunt Carol to tell her what time we’d be arriving for dinner tonight.

After circling the library for ten minutes, I finally found a parking space within walking distance. Now for the next challenge: change for the meter. My wallet was full of pennies, so I dumped out the shambles of my purse on the seat beside me. Amidst the lipsticks, hairspray, tissues, and notepaper, I unearthed a quarter and a dime. My lucky day!

I rearranged the contents of my purse, proceeded out of the car to the nearest meter and, feeling very organized, deposited my money. That’s when I had my little epiphany:

• I had put the money in the wrong meter;
• Today was Sunday, so I didn’t need to feed the meter in the first place;
• The library is closed on Sundays; and…
• I now had no change with which to make a phone call.

Appropriately humbled, I crawled back into the car and headed to the hospital. Where I made a collect local call to Aunt Carol. At the moment, I imagine she’s busy obtaining power-of-attorney for my affairs.

Monday, February 5

My dear Elizabeth,

Grandma came up to see us today. Her timing was perfect. I think this new mother needed a little mothering herself. It was so nice to have her here.

It did her heart good to see you. You had gone back on the ventilator the last time she was here, at Christmas, so this was the first chance she’d really had to see your sweet face. It was also her first opportunity to hold you. We spent the day rocking you and talking.

She brought you a new white hat she had knitted. To help maintain your temperatures, you and the other babies in the unit wear knit caps. Many of the hats are made by volunteers, but your grandmother makes yours.

She made the first shortly after you were born, a tiny cap knit from soft pink yarn. She used a small grapefruit as a model. Now that you have finally outgrown it, she must have moved on to other fruit.

She also brought you a stuffed elephant and giraffe, made of black and white cloth. Because babies first see in black and white and don’t differentiate colors, these animals are supposed to be more visually stimulating than those done in primary colors or pastels. Mother has looked everywhere for these black and white toys and called me triumphantly one evening to tell me she had found them.

This evening, you were moved from your isolette to an open crib, a small Plexiglas box with no cover that rests in a metal frame. Another little victory, my girl. From your new vantage point, you can see the world more clearly. At the foot of your crib, we have tucked a cassette tape player. We use it to play lullaby tapes to lull you to sleep. I wonder if the acoustics are better now that you’re out of the incubator. You’ll have to let me know.

We are able to hold you more all the time. I have taken over more of your care, changing diapers, dressing you, and giving you your baths (at which, I’m happy to report, I’ve gotten better after my inauspicious start).

Tuesday, February 6

Elizabeth,

Dr. Lucas examined you again this morning. For five to ten minutes, he looked deep into the interior of your eyes, the light strapped to his headgear illuminating your face in the darkened room. These are always the longest moments of the week for me. While I await his verdict, I try to pray, but I can’t find the words; I try to visualize the vessels in your eyes growing strong and straight, but I can’t make the image work. I usually end up abandoning thinking altogether and watch the clock.

This morning when he finished his exam, he turned to me, looking just a little less serious than usual. He said that you were starting to look better. When I asked better compared to what, he brightened and said, “Better than last week. Better than I had hoped. And I expect from now on, her eyes will keep getting better and better.”

He went on to say that you are moving out of Stage 3 and that he doesn’t foresee the need for further surgery. I thanked him profusely and burst into tears.

I think both of us were surprised by my reaction. I am finding that I can be brave when I need to, stoic and dry-eyed. It’s only when the crisis has passed that I let down. These were tears of relief, tears of broken tension.

There was something else in my reaction, too. At the moment the doctor gave me the news, I had a sense that someone was suddenly standing next to me. I turned to look. I don’t know quite how to explain this but . . . it was Jesus. He placed a hand on me and said simply, “See! I told you things would be all right.” And then He was gone.

I haven’t told this to anyone else yet. Part of me finds it awkward. I am not a big believer in visions or apparitions. I associate these things with revival meetings or televangelists. Although my faith is an important part of my life, I am quiet in my Christianity. And yet, this was clear as a light in a dark house, Christ’s presence beside me.

I don’t know quite what to make of it. My first reaction is to analyze something like this, to take it apart and look for the meaning. The only thing is that something like this has never happened to me. It was a moment that rose above my usual introspection.

I felt, quite simply, tangibly graced by God’s love. I need to hold tight to this moment, to hold tight and never forget it.

Thursday, February 8

Dear Elizabeth,

You went limp while I was feeding you this morning. I sat you up in my lap, and you spit everything up. Your skin was dusky, and you were breathing hard.

You’ve been this way since Tuesday, listless and exhausted. We are trying to keep you as quiet as possible. The additional handling in the open crib may be part of the problem, overstimulating you and tiring you out.

The visit from Dr. Lucas was stressful, too. During these exams, your eyes are dilated with drops, and the doctor places metal retractors between your upper and lower lids to keep your eyes open. It looks incredibly invasive and painful. A nurse holds you down to restrain you from moving while the doctor examines the interior of your eyes. You often have episodes of apnea and bradycardia after these exams.

Your red blood cell count is low today, which may be contributing to your fatigue. You got blood last night which should help. Because your temperature is stable, they will leave you in the open crib for now.

Friday, February 9

Hello, Elizabeth,

A big day, my girl, a big day. You were still sleepy this morning, but much improved. You were doing so well that Dr. Mishefske suggested that I try breastfeeding you for the first time.

They say that you put aside your modesty when you have a baby and, for me, this has certainly been true. Hutzel has no private place set aside where I can pump breast milk. When it is not occupied, I use the parent’s lounge. When it is, I have reverted, of necessity, to the supply closet. The custodian now knocks delicately before coming in to get his mop and bucket.

I couldn’t take you out of the unit to nurse you, so I sat perched on a stool at one end of the room, surrounded by windows opening into the hospital on three sides. The nurses hung blankets on all the windows and put a screen partially around us. Dr. Mishefske hung over my shoulder, positioning you and murmuring words of encouragement. A respiratory therapist was wheeling equipment in and out; a father was talking to a doctor; babies were crying. I could hear the nurses conferring in the hall, awaiting a report on how it was going. Oh yeah, I thought. I’m relaxed now.

Actually, it went better than anyone expected. You latched right on and seemed to have the idea. After a few moments we returned you to gavage feeding so you wouldn’t get too tired, but – wow, Elizabeth, we did it!

Sunday, February 11

Dear Elizabeth,

Another dead baby in the nursery. I was walking through Room 1 to get a glass of water and there, two feet from the sink, lay an infant in an otherwise empty bed. He was half-covered by a blanket, his face the most haunting shade of gray. “Robert”, the tag on the bed says.

I am confused. I feel so good about how far you have come, Elizabeth. There have been so many prayers on your behalf, and I believe they have lifted you up. But when I look at that baby in that bed, my belief breaks down.

What is it that the scripture says about the sparrows? This baby is surely greater than a sparrow. A child, like you. While I am very thankful for your good health, the baby in this bed is no less deserving. Why you, why not him? This baby is no less deserving of life.

People speak to me with conviction about the power of prayer. I don’t know. That makes me feel that God is weighing the scope or depth of our prayers, and I can’t believe that. That’s real pressure. If we don’t pray quite right or enough, it won’t happen? And what if you do pray, but your prayers are unanswered? Your prayers weren’t powerful enough?

At the same time, I know that God is a power beyond my understanding. I know that God is not Santa Claus, that prayers are not wishes. I believe that God is infinitely loving and merciful.

All I come back to is grace. Through my devotional readings, I have come to understand grace defined as unmerited, divine intervention. That’s it. That is the only explanation that seems to fit because it feels like a gift, unearned and undeserved. Not a reward. An act of grace.

Monday, February 12

Dear Elizabeth,

Today was a banner day for you: you moved downstairs to the Progressive Care Nursery. I spent the day settling you in, meeting new people, learning new routines.

And saying good-bye. We closed the door on our time in the NICU with mixed feelings. It was very hard to say good-bye to the many people who have cared for you, for all of us, for so long. It was also hard to leave, seeing the look in the other parents’ eyes, a kind of aching happiness. I know that look. I’ve had that look.

We heard over the week-end that this move might be coming. My sister, Carol, came to the hospital with a stuffed bear she had made to commemorate the occasion: a big, pink autograph bear, with the name “Elizabear” stitched over the heart. Over the last two days, it has been passed from nurse to nurse, each of whom has penned words of encouragement and remembrance.

Although many of the entries make reference to miracles and love, my favorite entry comes from a no-nonsense nurse who says,

Elizabeth,

May you never mistreat your parents. They are wonderful, caring people. You’ll never believe what they have been through.

I can see the value of having this in writing when you are sixteen.

The most poignant comes from your primary nurse clinician in the NICU. Although our styles conflicted at times, we were always brought together by our commitment to you. She writes:

Elizabeth, my very little bird,

It’s time to spread your wings and fly. I never thought we would get this far when we started back in November, but you showed us all. God bless and keep you and your parents.

Love,

Margie

Tuesday, February 13

Dear Elizabeth,

Our first full day in PCN has gotten off to a bad start. After Dr. Lucas examined you this morning and returned you to your bed, the nurse neglected to turn on your apnea/bradycardia monitor. This was a real problem because, as I pointed out to you just a few days ago, his visits exhaust you, often to the point of your suppressing your breathing. I arrived at the hospital a few moments after he finished his examination and was horrified to see the monitor screen, dark and blank.

You were fine, thank goodness, slumbering away, still pink. I turned the monitor back on. I called the nurse over and explained my concern. She said that it was an oversight. While I understand that these things happen, this was not insignificant. Although I doubt that this particular problem will happen again, what else might? It is so hard having your care in other people’s hands, especially when they don’t know you.

On a happier note, Elizabeth, today is your three-month birthday. The best gift we could hope for is good news from Dr. Lucas, which is just what we got. He said that your eyes are partially in stage 3 and partially in stage 2. Things are continuing to move in the right direction, as he predicted.

You have been gaining weight dramatically and are working on a tiny double chin. You weigh three pounds now. Three pounds at three months. There seems to be some symmetry in that.

Wednesday, February 14

Elizabeth, my girl,

You are lying in your crib, dressed in your gown with the red hearts and your ruffly socks, a lacy, little valentine of a baby. A few greeting cards, some homemade, some Hallmark, are taped to your bed. If all goes well, this may be the last holiday you spend in the hospital.

You sent valentines, too. In December, one of the nurses made inkprints of your hands and feet. I photocopied them onto pink paper, your handprints at the top, your footprints at the bottom, and wrote valentine wishes in the center of each page. I tucked one in your father’s briefcase and put the rest in the mail, where they should bring a smile to the faces of all of those who love you.

Thursday, February 15

Dear Elizabeth,

When I came into the hospital this evening, I passed a group of pregnant women and their husbands, laughing and talking. At first I thought it was a funny coincidence that all the women were largely pregnant, then I noticed the pillows under their arms and realized that they were on their way to Lamaze class. Our Lamaze class. The one we never got the chance to sign up for, much less attend.

I found myself taking the long way to the elevator and following them, surreptitiously taking it all in, looking at the women and their big bellies, and thinking this is how it would be, how I would look, how I would walk, how we would joke with the other couples about labor and deep breathing and delivery.

Most of the time I’m okay with what has happened. Okay to the point where the full-term babies in the regular nursery look huge and ungainly to me, and I think you are simply perfect. But once in awhile, like now, the unnaturalness of our experience hits me over the head, and I wish it could have been different.

The doctors don’t know why you were born too soon. They don’t know why membranes rupture prematurely or what triggers labor in the first place. I didn’t have any of the risk factors associated with prematurity: I didn’t drink. I don’t smoke or take drugs. I don’t have high blood pressure. I ate a balanced diet and had excellent, regular prenatal care. Up until the day of your birth, it had been a textbook pregnancy.

At times, I can feel resentful that I did everything right and this still happened to you. However, I have read that nearly half of all women who deliver prematurely do not fall into any high-risk category. Now that it has happened, I do fall into a category: women with a history of premature birth. My doctor says that I have roughly a 50% chance of it happening with the next baby.

Next baby? Although I would love more children, I have pushed that desire down, deep down. My focus is on getting you home. This experience has been hard on everyone, including Pammy. I can’t imagine going through it again with you, as a toddler, at home. How do people do it?

Friday, February 16

Dear Elizabeth,

I didn’t go to the hospital today. It was a busy day; the weather was terrible; I wasn’t feeling well. I finished what had to get done and put on my coat ready to head out. Daddy stopped me at the door and told me I ought to come back in and get some rest. He was right, but I hesitated. After a lot of protesting, I closed the door and came back into the kitchen.

This is the first day I have ever missed. And I worry – what was it like for you? I called the hospital, but you didn’t know that. How do you mark time in your Plexiglas box? Do you wait for me to come? And what happened to you when I didn’t?

Saturday, February 17

Hello, my Elizabeth,

Today was a brighter day. You continue to flourish in front of us. I missed a day, and I saw a difference in you. Your progress is remarkable.

Watching you unfold over these past few months has been a rare privilege, Elizabeth. We have witnessed things that few parents have a chance to see. It reminds me of time-lapse photography of wildflowers where, rather than seeing the flower perfect and all of a piece, you see it unfurling: green blades growing, buds forming, petals opening out one at a time.

When I could be dispassionate about it, your life has had a documentary quality to it where we were looking through a secret window into the womb. A womb with a view, as one of our friends has joked.

In the womb, most babies open their eyes at around the 25th week of pregnancy. True to this timing, when you were born, your eyes were still fused. When you were five days old, you struggled to open one eye and blink against the light. Daddy and I watched your left eyelid flutter and finally open as you gazed hazily at us. When we arrived the next morning, both of your eyes were open.

Our time with you has been a series of firsts: glimpsing your entire face for the first time, hearing you cry when you were four weeks old, feeling your skin next to mine the day I could finally hold you. We have had the privilege of seeing and savoring every new thing.

Monday, February 19

Good morning, Elizabeth!

I just called the hospital, and they said you had a good night. I always call before I go to sleep and when I first wake up. It helps me to feel connected to you even though I can’t be there and you can’t yet be here.

The room you will eventually come home to is across the hall from ours. Until now, it has been a room for guests. Soon, we will turn it into a nursery, a nest for you.

This past week-end, we were given a nice start on getting it ready. Close friends, Dedria and Micki, hosted a baby shower for us. It was one of those wonderful, civilized Sunday afternoons with good friends, good food, and good music accompanying our conversation. More than anything, it was a day to celebrate your presence in our lives.

While we were gathered around the fireplace, my friend, Jim, stood up and gave a little speech in your honor. He talked about what a happy occasion this was, this long-awaited celebration. He and his wife, Margaret, came to the hospital the night you were baptized. They know how far you have come.

After sharing a few anecdotes about us, Jim asked another friend, Ellen, to say a few words. She had done some research about your name and your birthday, and she told us that Elizabeth means “God’s promise” and that Grace means, appropriately, “Thanksgiving”. She noted that you were born on the same day as Robert Louis Stevenson and Charles Bronson (I find the former association more encouraging than the latter), and she added that it was fortunate that our custom was not to name our children after the saint who shares their birthdays or your name would have been Maxillendus. (You can thank me later.)

Jim closed his remarks by talking about how dear our children are to us and by asking others to share their favorite stories about their own kids. There were many sweet stories.

Then, of course, there were the presents: boxes and boxes of pink, lacy clothes; your first sailor suit; stuffed bears, bunnies, and Babars. Let’s just say that you really cleaned up and, once again, I get to write all the thank-you notes. (You can thank me for that later, too.)

Tuesday, February 20

Dear Elizabeth,

A few more thoughts about your name. I have wanted a daughter named Elizabeth for as long as I can remember. Elizabeth was the name of my grandmother on my father’s side. She died when I was nine years old, but I have always loved her name.

Grace is a word that sounds as beautiful as it is, a gift from God and a way to give thanks. It is also the name of my church, the church in which your father and I were married. And now, as it happens, it is the word that has come to define your life.

Although there were a lot of loose ends when you were born, your first and middle names were not among them. Daddy and I had agreed that we would name a girl Elizabeth Grace. Because your father and I have different last names, your last name was still an open question. We had talked briefly about it, and your father was receptive to using my name, but we had not worked through any of the related issues, such as the impact on your grandparents, for one.

The day after you were born, when you were so critically ill, a nurse brought me the papers for your birth certificate. As sure as I was of my name for a girl, I have to admit to a moment’s hesitation when the nurse asked me what I would call you. I had been storing this name up in my heart for so long, I was afraid to part with it for you. I wanted to save it for a child who I could call in from play, who would scrawl it on a kindergarten paper, who would have it for life. Finally, after a long pause, I wrote your name on the form: Elizabeth Grace. And your father’s name: White. Elizabeth Grace White. Writing it affirmed you. It felt like a little prayer.

Wednesday, February 21

Dear Elizabeth,

I feel as though I should just tape a picture of a bleak and snowy day to this entry. Most of today was spent digging out of, driving into, or trudging through a whirling winter storm. It was the kind of day when the schools are closed and reporters issue snow advisories, warning you not to drive unless you absolutely have to. I got stuck in a snow bank trying to turn a corner, but was pulled out and set straight by the kind strangers in the car behind me.

It was so good to finally reach you, safe and warm, within the walls of your hospital room. As of yesterday, you have been with us for 100 days. We’ve gone through an entire season since you were born. You never really experienced your first winter, and I’m glad you’ll be bigger and stronger when winter comes around again.

Hopefully, we’re at the tail end of this one. This has been a harsh winter — or maybe it just seems like it because of our circumstances.

Thursday, February 22

Dear Elizabeth,

Your father met with Dr. Lucas earlier this week because I couldn’t be there. Your eyes are predominantly in Stage 2 and moving into Stage 1. Because things look so good, Dr. Lucas doesn’t need to see you for two weeks.

While your father was with the doctor, I was in a meeting, a management training session I had committed to conducting months ago. The client who knows our situation said he would understand if I needed to cancel or reschedule, but I decided to go ahead with it. This work falls under another of my professional hats, human resources consulting, that I set aside when you were born.

I packed the car this morning with my briefcase, overheads, and other business essentials such as my breast pump. Basically, I can’t be anyplace more than four hours without access to a breast pump. I need to stay on a schedule for pumping just as other mothers do for nursing in order to keep my milk production up.

This makes for an interesting balance as I shuttle between home, the library, the hospital, and various companies. Fortunately, the library is close to the hospital, so I try to do research for three hours, shoot over to the hospital to pump, see you, catch up with a doctor, and then return to work.

Our freezer is full of tiny bottles of breast milk. Most of the time, you are fed from these, but, once a day, I nurse you. Yesterday, you took your entire feeding from the breast, a real accomplishment for both of us.

I’m glad this aspect of our life together is going well. There are so many others involved in your care, but this is one contribution only I can make. And, it turns out, I am uniquely qualified to do this: When you were born, my milk, like you, was pre-term, its composition different from that of full-term milk. Pre-term milk is the perfect food for a pre-term baby. As you grow and change, my milk will change, too, altering over time to meet the nutritional needs of a full-term baby. Isn’t it amazing how God makes all things work for the good?

When I came home after your birth, pumping did not go well. I spent a very stressful evening trying first a battery-operated pump, then a suction-based one, and finally manual expression. After an hour, I had produced about a tablespoon of liquid. I was wild, convinced that my milk would dry up and sure that you would not survive without it. I made your father drive me back to the hospital late at night so that I could use the pump there. The next day, we took out a long-term rental on a hospital-quality pump.

The pump sits on a table by my bed, as much a part of the room as the rest of the furniture, its heavy sighing the ambient sound of my days. Pam and her friends are thoroughly grossed out by it. I have become pretty attached to it, so to speak. We joke that while most lactating women let down when they hear a baby crying, I let down when I hear the hum of the coffee maker. (It’s tough when I’m making breakfast.)

Your pediatrician, Dr. Edwin, has been very supportive of my efforts to breastfeed you. She has agreed to eliminate your high-calorie supplement during one feeding so that I can nurse you and has moved your oral medication schedule to other times as well. I don’t want to confuse you during breastfeeding by having to switch to a bottle or gavage at the end.

After all these months of pumping, it has been an unexpected pleasure actually to nurse you. I don’t know what I expected, that I’d be pumping for life perhaps. There were times when it seemed that we’d be feeding you through tubes, attending to you in your little glass box forever.

Friday, February 23

Rise and shine, Elizabeth! Time for your exercises!

Your physical therapist and occupational therapist should be here any minute. I had no idea that these services existed for infants. (Even the term occupational therapy has my friends cautioning me about sweatshops and child labor laws.) There was a lot I didn’t understand. I have been pleasantly surprised to find out how much the therapists know about premature babies and how much they can help you.

For example, you have a pretty strong sucking reflex, but we need to build your sucking strength. The therapists do exercises with you, running their fingers around your mouth or back and forth across your lips to help you form and hold a “kissing” shape. They have given you a miniature pacifier to help satisfy your urge to suck and to help your mouth grow stronger. And they have taught me how to spot the signs of fatigue when you are eating, so that I can let you stop and rest or do exercises with you before returning you to the breast or bottle.

And there are other areas they are trying to address. As I learned earlier, a considerable amount of neurological development comes in the last trimester. As a mother walks, her movement rocks her baby, creating regular neurological stimulation. This contributes to normal development, and this didn’t happen for you.

In addition, most babies spend the third trimester in the fetal position, curled ever more tightly with each passing week. You’ve been lying straight in the incubator since your birth. As a result, you are not very flexible and may have difficulty with such normal developmental milestones as sitting up.

As a start, we are trying to get you upright more often. The therapist places you in an infant seat or swing, which provides you with physical and visual stimulation. We make a special effort to move your arms and legs, gently flexing your body and placing you in different positions.

Well-intentioned acquaintances tell me how you will “catch up” in a matter of months to other babies. The truth is that premature babies do not catch up to other babies who are the same age. A full-term baby who is one month old has actually had ten months of development. When you were one month old, you had had six months of development. Most infants are eased from the womb into a life of quiet and comfort. Your first months of life were filled with unrelenting pain. You will not magically gain four months in age and erase the trauma of intensive care to reach a par with your peers. Perhaps in time, these differences will even out, but for now, I’m not looking for you to catch up.

The main goal with your current therapy is early intervention so that we can identify problem areas and address them before they become larger. We will plot a developmental path that is normal for you, helping you along as much as we can.

Sunday, February 25

My dear Elizabeth,

It was wonderful to see you today. I hadn’t seen you for 48 hours. This week-end, Daddy and I took our first trip away since you were born.

Everybody said that getting away would be good for us, and it was, but, oh, how I missed you! When we came back, we drove straight to the hospital and gathered you up and rocked and rocked and rocked. We swore that you’d changed since we last saw you. You’d actually gained two whole ounces so you probably had.

I took this journal with me and reread it while I was gone. My sister, Cheryl, gave me this journal, its pages blank, a few days after your birth. She knows me well. If I can write things down, I can deal with them.

When you were transferred to Children’s Medical Center for your eye surgery, all of your records went with you. The evening before your surgery, I noticed your files sitting on a shelf beneath your isolette. Curious, I opened them. Yes, yes, I know, but I couldn’t help myself. Clipped to the first page was a handwritten note which said, “Mother takes a lot of notes, but not for purposes of litigation.”

What an introduction! Is that really what people think, seeing me with my scribblings? This is how I cope, folks. I’m not doing this to intimidate anybody. I’m doing it to comfort myself, pure and simple.

This journal has been my friend, confessor, and counselor. Someday, Elizabeth, it will be my gift to you.

Monday, February 26

Elizabeth,

You have been very fretful for the last few days, not yourself at all. Last night, you had a episode of bradycardia, your first in several weeks. You also are not gaining weight as quickly as is desirable, only gaining two ounces in the last week. They are going to run tests to see if you are septic, but there may be other factors at work.

You were moved from a three-hour feeding schedule to a four-hour schedule last week, and they increased the volume of milk proportionately at each feeding, up to a little over one ounce. They changed your schedule in order to give you time to sleep between feedings, but because your stomach is so small, you are often hungry after three hours and you wake and cry. You have been taking the bottle regularly and nursing once a day, and all of this nippling may be too much of a strain for you. They are going to return you to gavage feeding on a half-time basis for awhile, which means that your NG tube will be in and out, but it will give you time to rest.

Tuesday, February 27

Dear Elizabeth,

Momentous news, Elizabeth. Dr. Edwin told me this morning that you may come home in two to three weeks. My first reaction was panic. Two to three weeks? How will I be ready?

Of course, I didn’t tell her this, and I quickly regained enough control to muster the appropriate reaction –unequivocal happiness — and to realize that we will be ready when you are.

I have been so focused on keeping up with our hospital routine that I haven’t prepared for our life outside of the unit. There are a lot of things to do, such as arranging for home-based physical therapy, learning to insert and withdraw your NG tube (in case you need it when you come home), even ordering special premie-size diapers (only available by mail). I also need to make an argument for having you come home on an apnea/bradycardia monitor. The thought of putting you to bed without one terrifies me. I think I would be virtually sleepless without it. Maybe we can make a case based on medical necessity for the mother.

Wednesday, February 28

Dear Elizabeth,

Today, I just happened to mention to your father that I saw Jesus in the examining room three weeks ago. Could you pick up Pammy after work? Would you get milk on your way home? Did I mention I ran into Jesus at the hospital?”

Based on his response, I’d apparently neglected to share the final item. Once we had established that I was serious, that I was sure of what had happened, Daddy was full of questions. What did Jesus look like? What did he say? Did anyone else notice him? How did I know it was him?

Good questions, all. Kind of the who, what, and when of getting at the facts, of grounding the experience. The only trouble is that it wasn’t that kind of experience. It was real in the most imprecise way, true in the most intangible sense

I’ve always understood the physical aspects of God in a strictly Old Testament guise: as a rush of wind, a tremor of earth, a pillar of fire. That is not how Jesus came to me.

He came in radiant quiet, full of light, simultaneously brilliant and subdued. His appearance was the visual equivalent of a still, small voice. I somehow knew I was in the presence of Holiness. He spoke to me soundlessly, yet I heard and saw him. I know this as a sure thing.

Beyond this, I can’t remember any specifics. I know he had a human form and face, but I couldn’t tell you what he looked like. I don’t know if he had long hair or a beard or what he was wearing. Try as I might, I can’t summon up the details. He was simply the picture of peace.

He regarded me with great tenderness, as though he knew me far better than I know myself. I recognized him instantly, as though we were being reunited after a long, empty absence. At that moment of recognition, the secret fear and worry I had been shouldering seemed to disappear. It was just gone.

How do you explain this to someone? Especially to someone who lives in the rational, reasoned, objective world as your father does? As most people do whose opinions I value? As I usually do?

This is my dilemma. Although it was so comforting at the time, I almost wish Jesus hadn’t revealed himself to me. His presence seems to require some sort of response, some kind of acceptance or disclosure.

It’s like receiving an unexpected gift of such extravagant beauty, you know you should display it, but it doesn’t go with your things. And you really can’t redecorate your whole house, just so this exquisite piece fits in. I am still trying to find the right niche for it.

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