Monday, January 1
Happy New Year, Elizabeth!
Well, it’s a new year, your homecoming year. Daddy and I probably had our most memorable New Year’s Eve ever. We had a wonderful dinner at the home of good friends, Kitty and Rich. Then, we headed down to the hospital at 11:15 p.m. to ring in the new year with you.
It wasn’t exactly black-tie (yellow-gown was more like it), but it was fun. We stood by your isolette, joking with the nurses, and keeping one eye on the clock. At the stroke of midnight, one of the doctors counted down: 5-4-3-2-1, and then everybody shouted “Happy New Year!” The staff all toasted with sparkling grape juice. Daddy and I uncorked a bottle of champagne and raised a glass to you.
You blinked your eyes a bit, but overall you pretty much dozed through New Year’s. I certainly hope you remembered to make some resolutions. (Like, maybe to get the heck out of here in the next few months?)
The first baby of the new decade in Detroit was born at Hutzel Hospital, just 20 seconds after midnight. The baby was premature and weighed about three pounds, so she is in the NICU along with you. Because of this, the NICU made the news, both on television and in the papers. (For some inexplicable reason, however, they forgot to focus the camera on you. You’ll have to wait for your 15 minutes of fame, I guess.)
Both Ohio State and the University of Michigan lost their bowl games. Michigan played in the Rose Bowl. Ohio State had such a bad season that they played in some obscure bowl and still lost. We spent this afternoon at Aunt Carol’s house, listening to Daddy and Uncle Eric yell at the TV and playing with your cousins, Alex and baby Audrey.
Audrey is not quite four months older than you, but she was full-term and is already up to 16 pounds. It does my heart good to hold her and to think of you someday heavy on my lap.
You are looking better and better all the time. Even though I see you every day, I can almost see you growing. You look so much larger to me, particularly in the size of your head and your length. Your hands and feet are beginning to fill out. I can actually see some flesh on your legs, and your cheeks are so round and beautiful. The biggest change is in your face. Although you’re not yet two pounds, with your almost-full cheeks and your wide eyes, you’re beginning to look quite babylike.
You have a new roommate in the next isolette, still very tiny. Her name is Jessica.
Tuesday, January 2
Dear Elizabeth,
Today is always a day of celebration for me. It is my grandmother’s birthday, and she is 85 years old.
She left Ohio to return to her home in California about two weeks ago. She comes back east about once a year, so we were very lucky that she was in Ohio with Grandma and Grandpa when you were born.
You are lucky because she is your great grandmother. She is a legend among our friends and family. Who else would raft the waves with her grandchildren in her late 60s? Who else would break her arm running across the yard while teaching school at age 80? Who else would move north to a new home at 83 to make some new friends? You guessed it.
More than anything, I admire her abiding sense of optimism. Some people’s cups are half empty; some people’s are half full. She is the pitcher which pours into the cup. She has a gift for finding the best in anything and anyone. (When asked how she is, her unfailing response is “100%!”)
She does not come to this view disingenuously. She has lived through much sorrow in her own life – lost children, lost husband, dark years of family illness and turmoil. Her faith is the wellspring from which she fills the pitcher.
I am her oldest grandchild, and I know her heart ached for me when she came into my hospital room on the day of your birth. At one point, we were alone, and she asked me if I would like her to say a prayer. She sat in a chair by my bed and bowed her head, saying the words aloud for both of us. The only prayer in my heart was “please”; but her first words were words of praise, not supplication. “Now our God, we give You thanks and praise Your glorious name.”
I hope so much that you’re able to grow up knowing her. I like to think that, whatever happens, you will cultivate her spirit in you — and pass it along to your children.
Wednesday, January 3
Elizabeth,
Jessica is dead. She is dead, and she is lying in the isolette next to me, stiff and still. She is swaddled in a blue blanket that covers her body and most of her face. Only her gray forehead and a few baby curls are visible above the blue flannel. She has been like this since I came in this morning.
It took me awhile to notice. When I come in, I turn my attention to you. I check your charts; I tell you about your day and mine; I talk to your nurse; I sing you to sleep. During a quiet moment, I glanced over at the next bed. I looked and looked again, harder. I noticed a circle of leads and wires on the shelf above Jessica’s bed; all of her equipment had been turned off.
I thought I had to be mistaken. Perhaps someone had just overbundled her, perhaps there was a medical reason for all the blankets. Surely, they wouldn’t let a dead baby lie here for hours out in the open. Surely, if she were dead, someone would have draped something over her isolette or asked me to leave.
All around me, it was business as usual in the NICU, nurses leaning into isolettes, technicians wheeling in equipment, clerks answering phones. I finally found the words and called a nurse over. “I think that baby is dead,” I said. “Can this be?”
The nurse said that yes, the baby was dead. She said that it was not a great situation, but they had no place else to put her. And they couldn’t take her out of the NICU because they were waiting for her mother to come. Parents have the right to see their babies and pay their respects. They had been waiting all day for her mother and would wait awhile more.
I sat back down. I didn’t know what else to say.
Now that I have had a couple of hours to digest things, I can’t begin to express my fury. How can I sit here breathing life into you, literally in the midst of death? What about you, Elizabeth? Do you know or sense any of this? What about Jessica’s mother? Is she expected to grieve in public when she sees her baby like this? And what about Jessica? What about her rights? There is no respect in this. This is so wrong.
Dear Elizabeth,
I waited until they wheeled Jessica away tonight. Her mother never came.
Thursday, January 4
Dear Elizabeth,
I’ve been thinking a lot lately about the nature of grief. I can’t imagine losing you. Your father has a different take on this than I do: he says we should be happy for each day that we have you, even if your time with us is cut short.
I don’t feel that way. I can’t conceive of a life without you. I don’t know how we would go on — how we would go about our days, rising with the alarm, chipping snow off the windshield, scheduling lunch with friends, making plans for the week-end.
You would always be there, palpable, but gone. A long, red scar up the middle of my belly. The only hard proof of you.
I remember this woman. I was in Atlanta visiting your Aunt Cheryl two weeks before you were born. We were standing in a department store with a tangle of kids and parents, awaiting the kids’ chance to parade their Halloween costumes. Aunt Cheryl had made your cousin Michael an elaborate dragon costume, and he was refusing to put it on.
The woman had two children with her, a pirate and a princess. I was admiring her children’s costumes, when apropos of nothing, she said that she had had three children, but that her baby had died a few months earlier. She went on to tell me about how her baby had gotten sick, was in the hospital, had good doctors, got better for a while, but didn’t make it. This went on for several minutes, during which time I was nodding sympathetically, (darting glances at Aunt Cheryl), and thinking “why is she telling me this?”
Well, now I know. That baby was such a fact of her existence, someone she needed to make tangible for others. I wish I had the chance to talk to her again.
Friday, January 5
Dear Elizabeth,
You had your second eye test yesterday. It showed that you have moved to Stage 3. This means that the vessels have become very twisted, and a scarred ridge has developed which could begin to pull at the retina.
Finding out that you were at Stage 3 really hit me in the gut. The doctors and nurses are all trying to be reassuring. They say that a lot of babies go to Stage 3 and don’t go any further. (Of course, they said that about Stage 1 last week.) What we need to be concerned about is Stage 3+. This stage means that there is a definite pulling of the retina. If you reach this stage, they do surgery within 72 hours to freeze the ends of the twisted vessels and try to keep the retinas in place.
I have so much uncertainty and so many questions. The ophthalmologist won’t evaluate you again until Tuesday, five days after his last check. If they only have a 72-hour window of time to do the surgery once you hit 3+, how can he wait 120 hours to check you again?
Saturday, January 6
Dear Elizabeth,
I should be more optimistic about your eyes. You have overcome many things so far, and your overall progress has been remarkable. I don’t know why this is different. It’s just that it’s one more thing in a series of serious things, and, sometimes, I feel that our luck can’t hold.
When I sit by your side, I see you gaze out at me solemnly with your bright eyes, and it is very clear to me that you see me. I cannot bear the thought of your not being able to do that.
Kathleen, one of the nurse clinicians in the unit, knows me well. Today, she saw me sitting on a stool by your bed, poring over articles about ROP, trying to absorb and come to terms with pages of technical data. She sat down next to me and took a paper towel from the dispenser next to us. Pen in hand, she sketched out a picture of the stages of ROP, from an optical nerve with normal vessels to one with twisting vessels and a pulling ridge. She compared it with sewing a straight seam to sewing one that is bunched and puckered. It made sense to me.
I tucked the folded paper towel with its inky squiggles of the optic nerve in my medical notebook. As I write this, I can see it between the pages like some dark, cartoony bookmark.
Sunday, January 7
Elizabeth,
I am struggling with this one. I know I should be able to trust God with the newest development with your eyes. I know there is no limit to what He can do and no end to His love for us.
I know it, but I have trouble accepting it…even believing it. Why else would I be so unsettled? My grandmother’s life is an example of relinquishment and trust. This sounds inspiring, but I have such difficulty putting it into practice. I’m not even sure I want to.
My minister talks of submission, of surrender to God’s will. These concepts are totally at odds with the way I live my life. Totally at odds with the way I am living right now, mastering medical jargon, negotiating with doctors, managing the details of my personal and professional life to see you through this experience. This kind of energetic self-reliance is what I know. It works for me.
My mother talks gently of giving you to God. Of handing you over to his care, of yielding to his plans. This sounds to me like abdication. She calls it trust. And points me to Proverbs 3:5-6:
“Trust in the Lord with all your heart
and do not rely on your own insight;
in all your ways acknowledge him,
and he will make straight your paths.”
Do not rely on my own insight? Easier said than done.
Monday, January 8
My Elizabeth,
I started back to work on the book last week. It’s good for me, and I need to make real headway, but it’s often hard to concentrate.
I miss you terribly and count the hours until I can see you again. My heart brims with thoughts of you, and it soars when I hold you close. You are so precious to me.
Your father seems to cope better with all of this. He is much more able to separate what he needs to do, moving between the office, our home, and the hospital. Sometimes I think he compartmentalizes better; sometimes I think he has no choice. It’s definitely a guy thing. He loves you as much as I do, but, right now, he has a different role to play.
Sometimes this is an issue for us. Daddy is keeping our regular life pretty much on track, getting quotes to have the house painted, organizing an office basketball tournament, working on our taxes. I want to abandon all of this and focus on you and the daily demands of hospital life.
Daddy was intensely involved with you at the beginning when I was barely able to leave my hospital room; now he leaves me to attend to the details of your care. He is very optimistic about you, and that’s great, but sometimes I feel as though he trivializes what are genuine, medical issues. We are often in different orbits, sometimes converging, sometimes crashing into one another.
He would like to make plans to go away for the week-end in February. Right now, I can’t imagine being more than a few miles away from you. I am trying to keep an open mind. I need to take things one day at a time, and, (at the moment), I can’t look beyond Tuesday.
Tuesday, January 9
Dear Elizabeth,
I love you so much. I thought I would begin this entry by telling you so. You are such a sweet baby. Now that you are off the ventilator and haven’t had any IVs for awhile, I have been able to hold you more often. In this last week, I have become confident enough to take you out of the incubator and put you back by myself, detaching and re-attaching leads, positioning your feeding tube, keeping the oxygen hose by your face.
I try to hold you while you’re receiving your feeding so that you begin to associate the sensation of getting food in your stomach with the sensation of being held. Eventually, you will get breast milk in a bottle, and at some point beyond that, hopefully, from the breast. And then we will be able to put the whole thing — sucking, full stomach, being held — together.
You always wake in anticipation of your feedings. It is a wonderful time for the two of us. A few weeks ago, being held was an ordeal for you, often accompanied by desatting, apnea, and bradycardia. Now, you are very alert and interested in interacting. After about ten minutes, you tend to drift asleep in my arms as I rock away, rock away. I keep telling you that when we go home we’ll be able to do this all the time, rock and play and talk and dream.
Wednesday, January 10
Dear Elizabeth,
Dr. Lucas, the ophthalmologist, examined you yesterday, and you were still at Stage 3. I finally had a chance to meet with him and ask questions.
He reassured me about his only seeing you once a week. He said that there are various degrees within each stage, and you are at a mild to moderate degree of Stage 3. In addition, you haven’t changed much since last week which is encouraging. He said that he would know if you were moving toward Stage 3+, but that, given where you are with things, seeing you once each week is appropriate.
So now we wait from Tuesday to Tuesday. I plan to arrive early in the morning on Tuesdays to catch him. I also plan to wear a suit. I’ve been wearing casual clothes, jeans and sweaters, all along, and discovered quite by accident two days ago that some of the doctors give me much more attention when I am in my work clothes. It seems superficial, but if this adds to my credibility, I guess I’ll be dressing up a lot more.
Thursday, January 11
Dear Elizabeth,
I had to go to a funeral a few days ago, a funeral of a man who died of cancer much too young. His widow is my friend. It was a sad day and starkly cold, a day no one could reconcile with words of hope or comfort. After the graveside service, a friend, Sydrena, and I walked back to our cars in silence.
At my car, she reached into her pocket and drew out a box. It was a gift for you. I turned back the tissue to find a gold charm. On one side of the charm was a dove, symbol of the Holy Spirit, on the other, your name.
“This is from Jill and me,” she said. “We didn’t know what to do. We thought and thought and, finally, we came up with this. We wanted you to have something that you could keep forever, something for Elizabeth, no matter what happened.”
The charm was perfect. At times like these, I marvel at how thoughtful our family and friends have been. So many people have known just the right thing to do. I’m not sure that, if the situation were reversed, I would be as intuitively considerate.
Of course, some have not known what to do, and this has been instructive, too. I have taken so many lessons from your birth, Elizabeth. Among these is how to be a friend to others in times of crisis.
- I tend to need to talk, and I need others to listen — quietly, lovingly, and without offering up platitudes designed to make me feel better. I do not need to be denied my emotions.
- Sometimes, I need to be silent. “What’s happening with Elizabeth today? What’s happening with you?” are good questions from friends, and I will let them know if I am up to talking or not.
- I need the basics: help with meals, grocery shopping, rides for Pam.
- I don’t need to counter someone else’s fears about seeing you and I don’t need to comfort them as they fall apart. (I’ve had several visitors who fail to see the irony in this.)
- I don’t need sympathy cards. I need to celebrate. I had a baby. She is alive. I need to celebrate her. Please don’t send me your condolences. I have a baby.
Friday, January 12
My dear Elizabeth,
Over the week-end, you moved to the best room in the house, Room 4. I came in and was astonished to find you there. Rooms 3 and 4 are reserved for the more stable babies. How nice to be in that category.
The average stay for most babies here is only a matter of days. Many newborns are placed in Room 4 for observation, but they still go home on time. There are more parents in this room as well, and more competition for the few rocking chairs. Because you will likely be in here for a matter of months, we have requested a corner space when room opens up. It’s not the Plaza, but for a while, it will be home.
You are still under the oxygen hood, but they have removed the oscillating waterbed because your breathing has improved.
Your feedings are going well, and are beginning to be delivered by gavage rather than pump. This means the milk flows through the tube into your stomach by the force of gravity rather than having it slowly enter your system on a time-release basis. It is a step in the right direction.
Good news! You reached the two-pound mark this week! You are getting to be a big girl, my love. Or so it seems in the NICU where everything is relative.
Saturday, January 13
Hello, Elizabeth,
Happy two-month birthday! What a happy day for us!
I am especially excited because my dear friend, Melissa, is coming today. She is leaving her two small daughters with her husband, Mark, and driving eight hours round trip from Columbus just to see you. She, our good friend, Cheryl, and I have been kindred spirits since sixth grade. We have held one another’s hands through first dances, driving tests, college admissions, family illness, broken relationships, and baby showers. I am so anxious to clasp her hand again and have her hold yours.
Cheryl has already been to see you. She came up the day before New Year’s, in a rare break between teaching and law school. She wrote to me last week and said that she is so glad to carry a visual picture of you with her wherever she goes.
You have had several visitors in the last few days: Ann and her daughter Abigail; Sondra, an old pal from work; Chris, your unofficial aunt. My friend Mary sent uplifting greetings: flowers and an article about a premature baby in Minnesota who has gone home and is doing well.
Last week, Aunt Carol brought Alex, your three-year-old cousin, to see you for the first time. Although he spent a lot of time showing the nurses his plastic bug collection, he found you interesting, too. Not quite as neat as the praying mantis, but interesting.
My sister Cheryl drove up from Atlanta three days ago and brought you a wonderful gift. She has made your first baby finery, a lovely white flannel gown. The back is open to allow the nurses access to you, and the sleeves are wide and flowing to accommodate your tubes and wires. The gown is long, with a tiny empire waist and handsmocking across the bodice. It looks rather Elizabethan, a fitting first dress. We will try it on you today.
Well, it’s time to close because Melissa should be here shortly, and I’m still in my robe. Daddy just called from the car. He had a wonderful visit with you this morning on his way to the office. He said that you were awake and watching him for almost 15 minutes; then he sang to you and you slipped off to sleep. He loves his private time with you. It seems to be so good for you both.
Monday, January 15
Elizabeth, my girl,
Today, we laughed harder than we have in months. I gave you your bath for the first time. It wasn’t exactly my finest moment as a mother.
We give you your bath inside your isolette, removing your diaper and blankets and sponging you with mild soapy water, then rinsing you dry. It’s a tricky process because we have to keep you warm and have to keep oxygen flowing by your face the whole time. I wrote down some notes in advance to guide me:
- Clear bed
- Get all towels in advance
- Keep wet cloths warm
- Remove leads
- Start with eyes
- Keep oxygen tube by nose
- Keep head covered
- Wrap warmly before making up bed
Well, the notes were all for naught. I’m not known as the most coordinated person in my family and, mid-bath, I dropped the oxygen hose, and, in the course of retrieving it, knocked the whole basin of water over on your head. You were fine, very wet, but fine. I was horrified. As I was anxiously blotting you dry, your father said, “do your notes say anything about not pouring a bucket of water on her head?”
Your father captured the event on videotape. On the tape, you can hear me dithering, the nurse reassuring, your father laughing. Through it all, I imagine you’re thinking, “I may survive the NICU, but I’m not sure about these two.”
I promise by the time we take you home, I will get better at this. If all goes well, we may be about halfway there.
Wednesday, January 17
Dear Elizabeth,
It’s 9:00 in the evening, and I’m waiting for your father to come home so we can go to the hospital together. More than anything, I’m wishing the next 24 hours away. Tomorrow, you have to have surgery on your eyes.
Dr. Lucas diagnosed you at 3+ last night, after a long day of waiting for him to come to the hospital. At 8:30 in the morning, the nurse put drops in your eyes to dilate them in preparation for the exam. I arrived at the hospital before 9:00, anxious to see the doctor and hear his findings.
10:00 came and then 11:00, and he hadn’t shown. I was nearly two hours past my breast-pumping schedule and hadn’t had a chance to eat, but I was afraid to leave in case I missed him. Finally, around noon, Dr. Lucas called. His car had broken down, and he said he wouldn’t be in today. He told the nurse he would come on Thursday to check on you instead.
I went down to the hospital cafeteria in tears. My breasts ached from not pumping. I was lightheaded from not eating. And I was crazy over waiting two more days for him to come. I was already concerned about him only seeing you once a week. Two more days were unacceptable.
When I returned to the NICU, I found Margie and voiced my frustrations. Her response was that everyone was complaining about my “annoying questions”. She might as well have accused Emily Post of atrocious table manners. I paused. Started to apologize. Struggled to find my inner diplomat. Found my inner militant instead…and went off to find the doctors.
I could tell they were surprised to see me when I interrupted their rounds. I outlined my concerns, just the facts, the simple math of retinopathy stages and time frames. I was insistent that someone check you today, if not Dr. Lucas, then someone else. I could tell they thought I was over-reacting, but they finally agreed to “see what they could do”.
I went home around dinnertime, and your father headed to the hospital on his way home from work to take over. The nurse reached him around 7:00 p.m. on his car phone. She said, “The doctor is on his way, and we’ve dropped Elizabeth’s eyes. Can you get to the hospital right away?” Daddy almost ran off the road.
“What do you mean you’ve dropped her eyes? How could this happen?” Daddy reacted when he heard the news. The nurse didn’t realize that your father is not as familiar with the vernacular of the NICU as I have had to be. Dropping someone’s eyes means that drops have been put in them in preparation for the eye exam. It means the doctor will be there soon.
Dr. Lucas arrived at 7:30 and, following his exam, broke the news of 3+ to Daddy who got to break the news to me.
Another doctor, Dr. Trese, an eye surgeon, will do the operation. Because time is of the essence and because he already has five other surgeries tomorrow, you have to go to him rather than his coming to you.
Daddy and I met with him at his office this afternoon. At the same time, you were being transported by ambulance to Children’s Medical Center. You made the trip safely, accompanied by a team of nurses and technicians. (Not the ideal first outing, I’m sorry to say.) I had to clear all the toys, clothes, and our photograph from your bed at the hospital, and bring them home. It’s been a long day.
I’ve talked to Grandma and several other close friends tonight, and they have called other people. Everyone is keeping you in their prayers.
I just want to get through tomorrow. I want to have this ordeal over for you. I now understand why parents wish to take their children’s places in times of suffering.
If I could go through this for you, I would, Elizabeth. They tell me that when it’s over, you won’t want to be touched much for a day or two. So we’re going to be with you tonight and all tomorrow morning, and we’ll rock you and sing to you and cradle you close. I want you to go into this feeling peaceful and very much loved.
Daddy just came in, so we’re on our way.
Friday, January 19
Dear Elizabeth,
You are still in the NICU at Children’s. You’re pretty deep right now. The anaesthetic and the stress of surgery hit you hard. You have been back on the ventilator since yesterday and are not breathing above it. You’re back on IVs, too, and they are holding your feedings. We are trying to minimize handling you because it sets all the alarms off.
You are pale and listless. Your eyelids, swollen shut, look like soft, purple grapes. You look as though you hurt all over.
It is very hard to see you like this. I dreaded sending you into surgery, knowing what a setback it could be for you. Yesterday morning, you were bright and active, blinking around at your new surroundings. I rocked you for a long time, and then I gave you to Daddy. I sat across the room, knitting, while he held you. Right before he had to return you to your bed, he lifted you up, a tiny, blanketed bundle, and put his mouth to your ear, whispering words of love and courage. It is an image of the two of you I will never forget. Someday you will have to ask him what he said.
Saturday, January 20
Dear Elizabeth,
This ordeal has really taken you down. I was led to believe that you might be back on the ventilator for a period of hours; it has already been two days.
I don’t think that anyone expected that you would have this much of a setback for this long. The doctors look preoccupied and worried. They tender the possibility that something in the eyedrops is keeping you sedated. They also ran cultures for infection this morning, just in case. For pain, you are receiving a minute dose of Tylenol through the IV.
Dr. Trese met with us immediately following surgery. The surgery was what is known as cryosurgery, done with morphine and a local anaesthetic. It involved going behind the eyes with a probe and freezing off fifty or so twisted vessels behind each eye which were pulling at the retina. Essentially, the goal was to create new scar tissue to reattach your retinas.
Although the surgery went smoothly, there is no guarantee it will be successful. We will have to wait for weeks to find out, to see how your eyes develop and if further twisting and pulling occur.
I remember staring at the doctor as he talked, my mind a blank, his words just noise, trying to store everything he said in a corner of my brain so I could process it when Daddy and I were alone.
This part is clear: without the surgery, you had a 70% chance of your retinas detaching, of blindness. With the surgery, the possibility of blindness is reduced to 50%. Not great odds, but improved ones, so we’ll take them.
You will be evaluated week to week. Your eyes may deteriorate further in the next several weeks, requiring more surgery. Or (please, God), they may gradually improve.
Sunday, January 21
Dear Elizabeth,
You are back at Hutzel, but still on the ventilator and barely breathing on your own. I don’t know whether or not to worry. Your color has improved some, and you are moving your arms and legs. But I can tell that they are surprised that you haven’t recovered more quickly.
I feel like no one is telling me much. They keep mentioning that it may be the eyedrops that are causing this, that they are slowing your whole system down.
Who knows? I always feel that I can only push for answers so far, that there’s an invisible line beyond which I shouldn’t go. Doctors and nurses have a peculiar sort of power. I must put all my trust in them, yet I feel I can’t communicate fully with them.
When I went to the doctors making rounds last Tuesday to be sure that you would be seen by an ophthalmologist, I was cautioned again by Margie that my role was to suggest, not to assert. I took pains to choose my words carefully. All the while I was thinking: this is such bullshit.
This problem comes up all of the time in the NICU. A nurse neglects to maintain your a and b chart; a therapist handles you too roughly; the staff plays top-40 songs on the radio when the unit policy dictates quiet. Part of me wants to take over, to be belligerent and demanding about your care. Yet I worry that part of me needs to be gracious, even acquiescent. I’m afraid if I tick them off they won’t take as good care of you.
I know, on a rational level, that this is not true, that they are objective professionals committed to giving the best care possible to every patient. But I also see the dichotomies. I see the special things a nurse may do if she likes you; I hear how they talk about the parents who are difficult; I notice the extra attention a doctor may give to a problem if you demand it. I know that Dr. Lucas would not have seen you for two more days had I not pressed the issue.
So I smile and cajole and assert and suck up and balance precariously on their tightrope. My hope is literally in their hands.
Tuesday, January 23
Dear Elizabeth,
A better day, today, overall. You came off the ventilator yesterday and have been breathing well, with only a few a’s and b’s. You still don’t seem like yourself. Yesterday, you cried the whole time I was at the hospital. I imagine that you’re hungry. You have had nothing by mouth since they began the eyedrops last week. Today is your last day for drops, and they plan to start feeding you again.
Our friends continue to call about you. It seems that every night, I go home to a new barrage of messages on the answering machine. And, once home, the phone summons again, another well-intentioned family member calling to check on your progress.
Sometimes, it is all too much. It seems like a chore to call everyone back, an effort to respond to my family’s questions with enthusiasm. I feel like a reporter, just the facts, flatly stated. I am considering taping a different message on the answering machine each day to provide an update on your condition. I feel overwhelmed by their attention, but I would be beside myself if they ever stopped calling. Maybe I’m just depressed.
Wednesday, January 24
Elizabeth,
Too many calls, too many visitors, too many questions, too many things to do. I need to take a day off from everything.
From everything but you.
Thursday, January 25
My Elizabeth,
You are full of surprises. Not only did you come off the vent on Tuesday, but on Wednesday, you were taken out of the oxygen hood! You are breathing room air as though you have been doing it all of your life. You have had virtually no a’s and b’s since going on room air which is highly unusual. We are elated.
Now that the hood and your IVs are gone, all you have left is your NG tube and a few leads taped to your body. It makes it much easier to take you out and hold you, and we are doing a lot of that. You seem to like it; you also seem to be “requesting” it more. (That’s a nice way of saying that you are starting to cry your lungs out until someone picks you up.)
The nurses pluck you out now and take you for tours around the unit. You especially like being held over someone’s shoulder. You are so small, less than two-and-a-half pounds, that I can hold you up with one hand. Last night, you were snuggled into Daddy’s shoulder, your face pressed into his shirt. I don’t know how you managed, but you were breathing away contentedly.
Dr. Lucas saw you on Tuesday, for his first regular check-up after your surgery. Your scars are healing well, but as Dr. Trese had cautioned, it is much too soon to know anything about the success of the operation. When I asked Dr. Lucas if there was anything we could do to help you along, meaning should we provide things to stimulate your sight or have you rest your eyes as much as possible, he said simply, “You can love her. And you can pray.”
I like that man.
Saturday, January 27
Hello, my girl,
You have become a whole new kid over the last few days.
In one of your biggest strides, you have begun to take a bottle occasionally. When we first put it to your mouth, you seemed surprised and then delighted by the taste of breast milk. The sucking part was all instinct, and you got it down quickly.
Your bottles are tiny, two ounces in capacity. You get only one tablespoon at a time. Often it takes you a long time to finish it; more often, you drink about half of it before drifting off, and we feed the rest through your tube.
The tube is still your main method of feeding. You get a bottle only two to three times a day. There is a startling reason for this: sucking burns so many calories that you would lose weight if you were bottlefed at each feeding. The-more-you-eat, the-more-you-lose diet. What a concept.
In another new development, you have begun wearing clothes every day. Most of your wardrobe has come from your wonderful Aunt Cheryl. She has fashioned the most beautiful things for you: a tiny, white sacque that closes with a row of spring green ribbons, a cotton kimono with a pink, tassel-tipped drawstring, a rosebud gown with an eyelet ruffle. She’s cropped doll-sized, lace-topped socks to fit you and re-attached the lace. She has even sewn an ensemble for Valentine’s Day, adorned with dainty red hearts.
I think this clothing is as much for me as for you. I had begun a search for premie clothes several weeks ago to no avail. The few premie outfits available in department stores are for babies weighing about five pounds. I read somewhere that premature babies who get dressed every day tend to do better than those who don’t. Of course, as your Aunt Carol pointed out, so do the rest of us.
And you are doing well, my love. You lie in your incubator, dressed in your baby gowns, taking a bottle, and remembering to breathe, again and again. It is amazing what a difference a week makes.
Even more amazing is the fact that I am so blown away by your progress. There are times when you hit bottom that I don’t see any way back up. I get bonked on the head by the bad days and the good days in equal measure. In my dark days, I need to remember these good days and the lessons of hope and patience I have learned from your birth.
Monday, January 29
Dear Elizabeth,
I came into the unit this morning to find a new picture of you taped to your incubator. You look so good! You are bright-eyed and alert, wrapped in your rosebud gown, nestled in a nurse’s palm.
Another nurse took the picture during the middle of the night. They tell me that this is your best time, a time when you are awake and interested in interacting. This burst of pre-dawn energy does not bode well for the future, my dear.
The nurses often take pictures of you and leave them for me to find the next day. What a gift! And it makes me feel good to think of them holding you and enjoying you. Many of them have become attached to you and ask to be assigned to you (a far cry from where we were last fall). This is always a great comfort to me.
I sleep with a picture of you under my pillow. Tonight, I will take this one home and place it under the pillowcase, next to the one of the night you were baptized.
Tuesday, January 30
Dear Elizabeth,
There is a mother on the other side of the room, who has been here regularly for the last week or so. We’ve exchanged smiles and a few admiring glances into isolettes as we’ve passed by, but, for the most part, we are absorbed in our own babies and their needs. She sits for long stretches, stroking her daughter’s head, her hands, her back.
Today, we talked. She asked me about you, and then she asked me about Daddy, who had just left. She said that she is married, but her husband doesn’t come. “I think he stays away to protect himself,” she told me. “He’s afraid of getting too attached to the baby.”
My knee-jerk reaction to this was anger. Protect himself? Too attached? Who’s the grown-up here? Who’s the baby? The baby is struggling for her life. The father is trying to protect his feelings. Who has the more compelling need? To my mind, it’s not even a question.
My second reaction was sorrow. One of the lessons I’ve learned in the NICU is not to judge people harshly. I worry for her husband. If he actively loves his baby and loses her, he will have grief. If he holds back from loving her and loses her, he will still have the grief, shadowed by a heavy regret. He will have never known her. And his daughter will never have known him.
Someone once said that we do not choose when we come into this world or go out of it. All we can choose is what to do with the time in between. This is your life, Elizabeth, your only life in the here, in the now. I want it to be good. I want it to be filled with love. Whether it be measured in weeks or in years – especially if only in weeks – my job is to make it the very, very best it can be.
Wednesday, January 31
My Elizabeth,
I can’t stop thinking about that baby’s father. About how much he is missing and about how much, how very much his daughter needs him.
This life in the incubator is all you, newly sentient, know of the world, and so much of it is pain. Blood is squeezed from your heel; a tube is threaded down your throat; a needle is pushed into your spine.
I am here to render the rest of your world: to show you why you are here, to show you love. I am here to engulf everything else that is being done to you. I want you to sense my love as a physical force, love made flesh and bone.
To you, your father and I are the touch, the smell, the sound, the face of love. That is why we are here. That is why we come every day and stay as long as we can. We are resolved to be the larger part of what you know.
I would not have it any other way, Elizabeth. These last two months have given me the gift of the here and now, of living life not at its edges, but in its deep middle, its absolute marrow. Life has never been so hard; life has never been so holy. Nothing I have ever done has mattered more.
Miracle Baby 