Saturday, December 1
Dear Elizabeth,
Now I’m back. I spent most of yesterday afternoon talking to the doctors and nurses about you. They are testing around the clock to find what’s going on. Your head is covered with spots of red jelly; they just finished a 2 ½ -hour EEG, the results of which could take up to a week.
Because the team thinks that stomach reflux could be contributing to your dropping oxygen saturation levels (called “desatting”), they have put you on medication to control this. Your stomach looks swollen, which raises the possibility of necrotizing enterocolitis (NEC). They also think you may have a blood clot in a toe on your left foot, which they are hoping will reabsorb into your system.
Although that’s still speculation; we’re facing what we know for certain. You’ve been diagnosed with sepsis. You have two serious infections – staph and yeast, bacterial and fungal – in your bloodstream.
They think they can treat the staph infection with antibiotics. The fungal infection is the tricky one.
There is a drug that can be used to treat it, but it’s very powerful and may be toxic to a baby your size. The name of the drug is Amphotericin-b. The nurses call it Amphoterrible.
They will begin it in a minute test dose, .1 mg/kg, to see if you can tolerate it. If you can’t, I don’t know what we do. If you can, they will slowly increase the dosage until you reach the needed level of 10 mg/kg (100 times more than your test dose). This process could take days and may not be fast enough to combat the infection.
Because Amphotericin is so powerful, they are doing bloodwork to establish a baseline for your liver and kidney function. They’ll monitor the function of these vital organs after beginning the drug. You will also need a spinal tap; the doctors need to culture spinal fluid and urine before administering the test dose.
You will need a transfusion, too. Your platelet count is down to 28,000; it should be over 200,000. I can’t imagine how much they will transfuse; your entire system only holds about two ounces of blood.
According to Dr. Kazzi, one of your neonatologists, “you’re not out of the woods yet.” Such a gentle metaphor for such bad news. She knows I am poring over The Premature Baby Book, a good guide to the medical complications of prematurity. She encourages me not to read too much.
I simply don’t know what to do. It comforts me to write to you, but this is more for me than you. And, as I look back at this journal, I sound braver and more upbeat than I actually am.
I worry so much about you. I want to help you. I want to heal you. I simply don’t know what to do.
Saturday, December 2
My Elizabeth,
They began the Amphotericin at midnight. Your urine output remains steady, which means that your kidneys are functioning. You are tolerating your feedings. They are painstakingly testing your blood and urine for signs of trouble. They hope to bump the Amphotericin up to .25 mg/kg tonight. We have a long way to go.
I sit by your bed, watching the forced rise and fall of your chest. I want to breathe for you. I want to grab you out of the incubator, pull out the tubes and wires, put you in the car, and take you home. Home – where you belong with us. I want to take your temperature, rock you to sleep, check on you at night.
And we have a new worry. They have begun to hear your heart murmur again, meaning that the valve has reopened. This is more of a problem this time. The doctors feel they can’t use Indomethacin right now because it will compromise kidney function, and they are already very concerned about the effect of the Amphotericin on your kidneys. Their plan is to get some more Amphotericin in you, then perhaps suspend that to give an Indomethacin-equivalent, and then begin the Amphotericin again. And hope in the meantime that your rates hold steady – and that the drugs, the infection, or your heart problem don’t take you down.
For the first time, the awful possibility of losing you has eclipsed my optimism. You’ve survived so much that I was beginning to think you were invincible. I don’t feel that way right now.
Part of me is preparing for the worst – and I feel terrible about that. I feel like I’m letting you down. I’m having a hard time being positive with the many people who call each day to inquire about you. My mother says that God has given us our miracle and now we need to claim it.
I wish I could believe that. Her faith is so strong. When put to the test, my faith comes up shaky and uncertain, not literal faith at all. I don’t even know how to pray.
Others are praying for you earnestly, and I am thankful for this. Maybe they know what to say, what to ask for.
I find myself dipping through the Scriptures, searching for reassurance, for truth. This is what I come up with:
“Fear not, for I am with you,
Be not dismayed for I am your God.
I will strengthen you, I will help you,
I will uphold you with my victorious right hand.”
(Isaiah 41:10)
Sunday, December 3
Dear Elizabeth,
You are still here, Elizabeth, still hanging on. Every day when we get to the fourth floor, we take a deep breath and walk to the back window of the NICU. We peer through, exhaling with relief when we spot your isolette, still in the same place. Then we go around to the front and scrub in. I don’t know what we would do if you weren’t there.
You had to get more blood products last night because your platelet levels were dropping. When they transfuse blood, they have to reduce your feedings proportionately in order to keep your overall fluid intake steady. They gave you 9 cc. of platelets and decreased three feedings by 3 cc. each. This is such a delicate balance.
They held your early morning feeding because you had blood in your stool. NEC is still a worry. If you are having any gastrointestinal complications, they will stop feeding you altogether, returning you to IV nutrients.
Because your kidney function is stable, they have decided to try administering both the Amphotericin and Indomethacin. They will bump the Amphotericin to .3 mg/kg tonight. They’ll give you one dose of Indomethacin tonight and then two smaller doses, twelve hours apart. They will keep monitoring your kidney function and, if necessary, will alter the dose or frequency of each drug to try to keep things on course.
As you can probably tell, I just got back from talking to the doctors. What an ordeal! I was very comfortable with the NICU fellow, Dr. Mishefske, who was in the NICU the night you were admitted and who has overseen your care ever since. She has a new baby of her own, and we had built a good, trusting relationship in the last three weeks.
Now I find out that the NICU fellows change at the beginning of every month, which is, of course, just when you got sick. So I went to meet with the new fellow, so that I know him, he knows me, and we can work on establishing another good, open relationship.
Because I feel part of my job is to be an advocate for you, I make a point of talking to each new person involved in your care. This can be challenging. Your nurses change three times each day. There are also three nurse clinicians (the Triumvirate, as Margie calls them), who oversee your care and serve as liaisons with the doctors. Margie, your primary nurse clinician, provides good continuity from 8:00 to 5:00 weekdays, but this is a Sunday, and they rotate week-end coverage. The nurse clinicians do not supervise the nurses; there seem to be nursing managers for that, and I have not yet figured out that hierarchy.
And then there are residents, the fellows (nice to meet you), full-fledged neonatologists (who also change on a monthly basis because this is a teaching hospital and who seem a level removed from your care), and the head of neonatology (to whom I go when I don’t know where else to go, and he has been very helpful). I have yet to navigate the maze of respiratory, radiology, EEG and EKG technicians who trundle by your bedside lugging equipment on a regular basis, but I am getting to know some familiar faces.
Although your nurses change every eight hours, there is no guarantee that you will get the same one for two consecutive morning, afternoon, or evening shifts. As a matter of fact, it seems pretty much guaranteed that you won’t. This is starting to drive me crazy. Your health is monitored in part by your vital statistics, in part by the gauges and graphs by your bed, and in large part, by how you look and act, by knowing what is normal for you and comparing you to that norm. By my count, you have had 18 different nurses in the last ten days. This afternoon, your nurse’s name is June. We don’t know her, and she doesn’t know you.
Tuesday, December 5
Hello, Elizabeth,
Today is a very peaceful day, one of the first I’ve had just to watch over you and write. You are responding well to the drugs and look good. Your color is rosy; your eyes are bright; and, in the words of your nurse, Emily, you are very “wiggly” – all signs of improving health.
Your rates are relatively good: a vent rate of 18 breaths/minute; an oxygen rate of 30%. Tonight, the Amphotericin will be inched up to .49 mg/kg. Two of the nurses, Chris and Sharon, tell us how lucky we are, how much worse it usually is. Dr. Bottoms, bless him, has been coming by every day to check on your progress. He looks at you wonderingly and shakes his head.
You are such a strong girl, Elizabeth. Everyone comments on what a fighter you are, always rebounding in unexpected ways. The staff describes you as strong-willed and stubborn and takes great pleasure in predicting what a handful you will be when you are five. Right now, this is a challenge I would be happy to have. And besides, I rather like this quality in you.
I was stroking you and murmuring to you yesterday, telling you that you would be fine, that you are never alone, that you are loved so very much. You grabbed my finger in your hand, your victorious little right hand, and held on, squeezing tightly. It seemed like a sign, and Lord knows, I am looking for them.
Wednesday, December 6
Dear Elizabeth,
The news from all fronts looks good. Your platelet count was up after last night’s dose of Amphotericin, and the doctors are pleased. Because you are responding so well to it, they are going to move you to 1 mg/kg tonight.
The X-ray results for NEC were negative (yes!), and the doctors have returned you to full feedings: 6 cc. of breast milk every three hours. They think that your gastrointestinal system is fine, and that the blood they saw a few days ago was due to a small internal fissure.
There are no signs of your open heart valve. Hopefully, this time, it will stay closed.
I have good news from the nursing staff, too. Because I was very disturbed about the lack of continuity with your care, I met with the nursing manager. She was understanding and agreed to sit down with me each week and involve me in the planning of your nursing schedule. This was more than I expected, but very welcome.
Actually, I am amazed by the personal attention we get from the medical staff. Although I get frustrated with the constant staff and shift changes, I have found most of the doctors and nurses quite willing to carve out time for us. I think this is in part due to the nature of Hutzel Hospital and the patients it serves.
People come to Hutzel from all backgrounds and all walks of life, many from the fringe. Forty-three percent of all babies born at Hutzel have illegal drugs in their systems. Most of them end up in the NICU, making the ratio for your room more like eight out of ten. Tanya, the baby in the isolette next to yours, is twitchy and restless. I wonder if she is going through withdrawal. She and many of the other babies lie in solitude all day, starting out from their isolettes.
The doctors and nurses seem hungry for parents who ask questions, who demonstrate concern, who show up. I feel lucky to have their attention, but lousy for the reasons behind it.
Thursday, December 7
Elizabeth,
As I was making coffee this morning, the phone rang. It was Margie. “Elizabeth is pretty sick,” she said. “How soon can you get down here?”
I sank into a chair, stricken – more terrified by the fact that Margie had called than by what she actually said. The hospital has never called me before, even on your worst day.
Then I had a second, more terrible thought: What if you were already gone?
That’s how they do it, I said to myself. They have you come down and then they break the news; they don’t tell you over the phone.
I leaned against the wall in relief when I saw you through the NICU window.
Thank you, God, thank you.
You are still very sick, Elizabeth, and they don’t know what’s wrong with you, but you are alive.
According to the nurse’s report this morning, your color was bad, and you were “limp as a dishrag.” Your blood gases and shallow breathing were among the signs of a serious problem. You had desatted to 40, and your platelet count was 59,000. The team has begun bloodwork, X-rays, and a spinal tap to get a fix on what’s going on. So far, they have ruled out meningitis.
On a cumulative basis, you don’t yet have much Amphotericin in you. It is possible that the full force of the fungal infection is hitting you now.
In part, your condition may be due to something called bronchopulmonary dysplasia, a chronic lung disease that you have as a result of being on a ventilator. One of the medical staff’s goals is to wean you from the vent and supplemental oxygen as soon as possible, but for now, these are essential to keeping you alive.
When you are sick, it’s difficult for you to breathe above the vent, so they have increased your ventilator and oxygen rates. They have also stopped your feedings.
Right now, it’s 7:00 in the evening, and Daddy and I are waiting for any information the doctors can give us. We worry and weep. It is so hard to keep getting our hopes up only to have things come crashing down every few days.
Earlier today, we left your side to let the doctors complete their rounds and discuss what was happening with you. We found our way to the family lounge, knots of Kleenex in our hands, and huddled together on the worn sofa. A moment later, the door opened. The nurse at the door was apologetic, but to the point: we were asked to leave. Another couple, their faces crumpled, came in. Our clothes brushed in the doorway, but I don’t think they knew we were there.
The triage of grief: If they come in, and we are sent out, their baby must have died. There is literally not enough room for all this sadness.
Friday, December 8
Dear Elizabeth,
We are still waiting for a diagnosis. The blood culture showed signs of staph after eight days of antibiotics, and they’ve started you on a new, broad-spectrum antibiotic in an effort to treat the staph and anything else that may be going on.
We sit by your side and watch you wake and cry noiselessly. We haven’t heard a sound from you since you were placed on the ventilator moments after birth, but we can tell when you are crying. Your face contorts, and your mouth moves, mutely wailing your distress. We stroke you and sing to you, and your face relaxes. Sometimes I fell as though we are going through the motions of being parent and child, miming our parts. We do the best we can.
Each night when I leave, I study your face, memorizing your features, carving them on my heart. Sometimes I turn to go, take a few steps, and come back to look at you again. I am so frightened of losing you and, even more, of forgetting this part of you after you’re gone.
Saturday, December 9
Dear Elizabeth,
You have rallied a bit today and look more like your regular self. We are allowing ourselves a bit of optimism, just a bit.
This morning, you were desatting further, and your lungs did not sound good. The nurse replaced your endotrachial tube with a new one, and you immediately improved.
Your blood gases have been satisfactory, and they have been able to lower your vent and oxygen rates.
It seems as though the staph infection was the main problem. On the basis of blood culture results, they discontinued the antibiotic they started yesterday and replaced it with yet another one. You are still getting the Amphotericin and still tolerating it.
You are getting breast milk again, although in less volume, because you are also getting blood.
The roller coaster may be climbing up. Keep going, Elizabeth, keep going.
Saturday, December 10
Dear sweet Elizabeth,
First things first: I’m supposed to be writing thank-you notes, but I’d rather be writing to you. Your father has built me a fire in the fireplace, your grandfather is across the room reading, and a Bach concerto is playing in the background. I’ve not been this much at peace since before you were born.
We left you sleeping serenely at the hospital tonight. Although your blood cultures still show signs of staph and yeast, you seem to have made steady improvement. All of the important signs, such as your blood gases, show that you are doing better.
You did so well today that they lowered your vent rate four times: from 40 to 27 to 22 to 18 to 16. The lower this number, the more you’re breathing on your own, and, essentially, the healthier you are. Hallelujah! The nurses are all amazed by your progress. You may still be sick and need time to get well, but you are certainly a study in contradictions.
The people at our church will be glad to hear that things are looking up. Someone called today and left a message, but no name, saying that the people of Grace Church were holding you close in prayer. Well, no wonder, I thought. The December issue of the church newsletter just came out, with this startling bulletin:
“On November 13, our member Michelle LeCompte gave birth 27 weeks prematurely to a very tiny baby girl (just a little over one ounce!) whom they named Elizabeth Grace.”
I just hope no one reading this alerts the media. I can see the headlines now: “Miracle Baby Weighs Only One Ounce! Photos on Page Seven!”
The people of Grace Church are wonderful. Remind me to thank them for giving me a reason to laugh.
Monday, December 11
Dear Elizabeth,
Last night, you made extraordinary progress, going from 16 on the vent down to 10. And now you are at 8 and holding steady. You are such a strong, sweet girl.
I am back to writing thank-you notes. Until your birth, I didn’t realize how very kind people can be. I know that throughout this journal, I will try to explain how much was done for us, and I simply won’t be able to convey it. I’m not sure I realize the half of it.
At last count, I owed thanks to more than 100 people: for flowers, hot soup, hand-knit blankets, rides to the hospital when I couldn’t drive, help looking after Pammy, bath salts, books, and hand-painted pictures of forget-me-nots. My gratitude goes far beyond the meal or the gift. I am grateful to so many for believing in you.
Tuesday, December 12
Oh, Elizabeth,
What a glorious day! I walked into the unit this morning and found a group of nurses clustered around your isolette. For a moment, my heart sank, and then I saw the look of happy anticipation on their faces. They stood back so I could approach your bed and that’s when I saw you breathing on your own under an oxygen hood.
You went off the vent at 11 this morning and have been breathing away ever since. Margie has warned me that you may go back at any time; babies often get tired after two to three hours of breathing independently. But, so far, it’s been more than four hours, and you’re holding your own, beating the odds as usual.
This means that some new things are possible. Now that I can see your mouth, I can clearly see your whole face for the first time. I can see you smile (you are giving us these great “reflex smiles”), and I will be able to hear you cry. And it means that it will be easier to take you out of the isolette and hold you more often.
All afternoon, you have been making shapes with your mouth, forming little Os. You remind me of the Tin Man limbering up his joints. What a relief this must be to you! From time to time, you get your hand up to your mouth and suck away happily. Like all babies, you have a strong sucking reflex; now, you can finally satisfy it.
The roller coaster ride continues to be bumpy. Your last blood culture showed no signs of staph; however, they have detected a slight dilation of the blood vessels near the brain. They will monitor it.
Wednesday, December 13
Dear Elizabeth,
Today, you are one month old, and we are so joyful. You have been off the vent for over 24 hours – a wonderful birthday present indeed.
A gift has arrived from my mother. I unwrap it and find a small porcelain angel.
The angel is the perfect gift from you. When we left your side the night of your baptism, my grandmother suggested that we surround you with angels. My mother was reminded of a song from her childhood, the lullaby from Hansel and Gretel. That night and every night since, she goes to bed and mentally surrounds you with the angels from this song:
When at night you go to sleep,
Fourteen angels watch will keep.
Two your head protecting,
Two your feet directing,
Two upon your right hand,
Two upon your left hand,
Two you warmly cover,
Two above you hover,
Two are ever biding,
Your way to Heaven guiding.
I place the angel in a corner of your isolette to watch over you. It is as if Mother is here with us, too.
Thursday, December 14
Dear Elizabeth,
I should tell you about the rest of the things in your bed. Right after you were born, Daddy brought in a white stuffed bunny that a friend had given me when I was first pregnant. He added a soft Peter Rabbit rattle and a picture of himself, Pammy, and me taken at the shore last year. The bunny looms over you, and the rattle is nearly as long as you are. From your perspective, you probably think you have been born into a world populated by tiny little people and giant rabbits carrying clubs.
Aunt Carol put a button on the outside of your box that says, “I’m due in March.” The wombsounds box is still in its place, pulsing its comforting mothersounds. And now you have your guardian angel, watching over you night and day.
I sit by your side and tell you all about the shore where my grandfather lives, where all the family gathers to be together each summer: my parents, my three sisters, and their husbands and children. And next summer, you. I tell you about the things I will show you: the dance of the waves, the sandcrabs scuttling across the surf, the soft pine needles on the grass, the gazebo at twilight.
I can picture you in a ruffled bathing suit and sunbonnet at the water’s edge with us. Although snow is falling as I write, I can almost sense the warmth of the sun on our backs.
Friday, December 15
Dear Elizabeth,
You are still breathing on your own. This is turning into a good news/bad news thing. Although you are breathing independently, you have had frequent episodes of apnea and bradycardia and your oxygen saturation levels have been dropping. Apnea occurs when you stop breathing; bradycardia is when your heart rate goes lower than normal, often due to a long lapse in breathing.
They tell me this is to be expected. The monitors stuck to your chest track your breathing and heart rates; when a spell of apnea or bradycardia lasts longer than 15 seconds, an alarm sounds. When this happens, the nurse opens your isolette and taps you gently to remind you to pick up the pace, and this usually works.
In the vernacular of the NICU, apnea and bradycardia are called a’s and b’s. Because the area of your brain which controls breathing is not yet well developed, we will probably see more of these. If they become more frequent or persist, you may need to go back on the vent.
Your feedings are going nicely. You are up to 10cc. (2 tsp.) breast milk at each feeding; this is the full capacity of your stomach. Because your nourishment is going so well, they are only using your IV for medications and not for routine fluid intake.
You will need to get blood products today because your platelet count is low. On the bright side, they are going to discontinue both of the medications you were receiving for the staph infection because they feel confident that it is gone.
Tonight for the first time, I heard you cry. It was a tiny sound, like the cry of a kitten. It was the sound of you.
Saturday, December 16
My Elizabeth,
Today is one of those little victories. You have finally regained your birth weight — you are back up to 680 grams. You are much longer than you were at birth, up to 14 inches from 11-3/4.
Your length is increasing faster than your weight and this makes you look thinner than ever. Your backside is as flat as your front. There is no roundness to your bottom, just a bumpy network of bones where your bottom should be.
You and the rest of the babies in this room, all so gaunt, have pretty much the same appearance: drawn faces, pinched mouths, tired eyes. And because you all have low muscle tone, your limbs are at all angles, scrawny arms stretched over your heads, legs awkwardly akimbo. You look like baby birds, flesh stretched over cartilage, no fat, no distinctive features. Like little fledglings fallen from the nest.
You and Tanya, in the next bed, have been taking turns today triggering your alarms. You are having more a’s and b’s; something else is going on with Tanya. Because you are still off the ventilator, there is talk of moving you into Room 2, the first of the step-down rooms in the NICU.
You are making nice progress, my sweet. Your last blood culture has turned up negative for fungal infection. They will finish the full course of Amphotericin, but, at this point, they are more confident of your tolerating it.
Sunday, December 17
Hello, Elizabeth,
I’m writing this late at night, after a pretty steady day with you. Daddy brought Pammy to the hospital today to see you, and she got her first look at you without the ventilator tube. I think you are starting to seem more real to her. She’s had a hard time adjusting. She moved in with us last January and has faced considerable challenges – new school, new friends, new home, new rules, and now a new sibling to share her father with.
Pam looks very much like Daddy, and I think you have the potential to look like her (although given your current appearance, it would not be smart to tell her that).
Daddy’s parents, Nanny and Papa, left earlier this week to return to Arizona. It was great to have them here and good for Pam, who is especially close to them. I know it was hard for Nan to be at the hospital. When your father was 12 years old, Nanny and Papa had a second child, a baby girl who was born two months prematurely. She lived for three days. When Nan sees you, she weeps: for you, for me, for the baby who died, and probably for herself. I know their hearts were heavy when they left. We will send them pictures of you as you grow and change, but it isn’t the same as being here.
I had a good talk with the doctors today about where we stand and what to expect. They won’t promise an exit from the roller coaster, but this is what they did say.
They tell me that you will have occasional spells of apnea and bradycardia for awhile. They will probably be worse at 30-31 weeks of life and disappear around 36 weeks when the part of your brain that controls respiration matures. (Right now, although you are five weeks old, they still look at you in terms of gestation. In those terms, you are 29 weeks along.)
Although you do have chronic lung disease (bronchopulmonary dysplasia), you will grow lots of new lung tissue over the next six years which will improve your respiratory health.
They are still concerned about the possibility of necrotizing enterocolitis, but the fact that you are receiving breast milk and digesting it well is a positive sign.
Some of the effects of prematurity will be cosmetic. Your nostrils may be flared because of the NG (nasogastric) tube, and your ears may stick out because of the facial tape used for the ventilator and NG tubes. Your features may be slightly distorted for the same reasons. You will have a flattened head from lying prone for long periods. These effects should diminish over time as you grow and your face fills out. In truth, these are the least of my worries.
At about six weeks of age, they will begin to test your vision. They will be looking for something called retinopathy of prematurity, which can detach the retinas and cause blindness. You are at greater risk for this than some premature babies because of your very early birth and time spent on high oxygen levels.
You will have an audiological evaluation in a few months. Hearing impairment can be an outcome of prematurity; it turns out that the use of Amphotericin and other antibiotics can also compromise hearing.
It is too soon to tell if your premature birth has had any effect on the development of your brain. Although you miraculously sidestepped any bleeding in your brain, other complications are highly possible. A significant amount of a baby’s neurological development takes place in the last trimester of pregnancy, during which the neurons are migrating and neural pathways are being established. At this point, the beginning of the last trimester, you should be developing securely in the womb; instead, you’re in the intensive care unit, plagued by pain and stimulation.
And it is also too soon to know about cerebral palsy. Children born prematurely are at high risk for CP, but it often cannot be diagnosed until a baby gains muscle tone. It appears that it may be nine months to a year before we know whether or not you have CP.
This last piece of news was the biggest surprise to me. I didn’t realize we would still have unknowns once you came home. My mother already knew some of this. She has been reading ahead in The Premature Baby Book.
The bottom line is that prematurity is the leading cause of disability. This is a fact of which I was happily ignorant when I became pregnant. Although I worried, as many expectant parents do, about the possibility of having a disabled child, I never gave a thought to having a premature baby. And, until now, I never made the connection between prematurity and disability. Was it just me or don’t the obstetricians tell you about this?
In any case, what I knew then and what I know now is pretty much academic. I’m trying not to read ahead — just grappling with each day as it comes. We’ll deal with the other stuff if and when we need to. You have come so far, Elizabeth, and for now, that is my focus.
I’ve saved the best news for last. Tonight, you moved to Room 2! All of the babies in this room are off the ventilator, some under oxygen hoods like you, some not. There is one nurse for every four babies in here. And a few more parents, which is nice.
Wednesday, December 20
Dear Elizabeth,
It’s been three days since I last wrote to you. Part of the reason for that can be gleaned from the date on this entry. In all the commotion surrounding life in the NICU, I’ve forgotten to mention to you that Christmas is drawing near. Looming is, under the circumstances, perhaps a better word.
I’ve been so caught up with you and life at the hospital that I’ve barely had time to think about Christmas. So in the last several days, I’ve been shopping, wrapping, and mailing gifts like crazy. We’ve had boxes of decorations in the living room, unopened, for a week, and we’ve been trimming the tree, a branch a night, it seems.
Some people think I’m nuts to be doing this. They wonder where I find the energy and why it’s even important to me. I think it is a way to try to make things seem slightly normal. It’s a way to affirm the woman I was whose place settings always matched as opposed to the woman I’ve become who can’t take care of her child.
Form and order are foundational to me, so I’m working on Christmas cards. In each are tucked one of our favorite photos of you, taken earlier in the month. You’re lying in your incubator, and Daddy is stroking your back with his finger. The picture conveys a sense of proportion: Daddy’s finger against the length of your body. Of course, it also conveys a few other things: the ventilator, IV lines, monitors, sensors, and wires. Social graces aside, I guess it’s not your typical family photograph.
Although most of our friends know about you by now, I imagine this picture will give the few who don’t a scare when it falls out of their Christmas cards. Some of our friends will tack it to their refrigerators, next to the pictures of red-cheeked kids on ice skates and families by the fireplace. We think you look wonderful.
Now that you’re doing so well, I’m caught up in the spirit of the holiday. My parents arrive in three days, and Jamie and Jeff in four. We’re celebrating at my sister Carol’s house. Under the circumstances, she was kind enough to take over the arrangements this year.
Grandma is so anxious to see you. Did I tell you she called every night during your first month? And that Grandpa encouraged this for the first time in his life? (AT&T is certainly glad you’re here.) Since your one-month birthday, Grandma’s been trying to wean herself from daily calling — her record so far is three days. She and Grandpa both thrive on news of you.
You have been off the vent for nine days now and are continuing to breathe on your own. Since regaining your birth weight four days ago, your progress has been good. You weighed 750 grams last night. That’s one pound, 10/1/2 ounces, and a new record for you. Congratulations, Elizabeth!
You have dropped off to sleep while I was writing this. I’m getting ready to leave the hospital, my sweet, and go home to tackle that Christmas tree. Let’s hope the roads are good. It’s been snowing regularly for the last five or six days. We will definitely have a white Christmas.
Friday, December 22
Dear Elizabeth,
Yesterday was supposed to be the shortest day of the year; instead, it seemed like the longest. Yesterday, the roller coaster nearly crashed. The warning signs began with a build-up of fluid in your lungs and increasingly frequent apnea. I arrived at the hospital shortly after your problems started.
You would stop breathing; they would stimulate you and you would breathe again, but you were unable to sustain it for more than 30 seconds at a time. This went on for about half an hour. You were growing increasingly fatigued. Your color was a mottled blue and pink; your head hung down as they held you; your eyes seemed to be rolling back in your head. You were limp and exhausted. Finally, they put you back on the ventilator.
Actually, by that point, I was relieved to have you on the vent. I was ready to put it back in myself. You clearly needed to rest.
As the day went on, things slid downhill. They thought that your heart valve had opened again. This time, surgery was the only alternative; drugs were not an option.
They also were concerned about infection. It turns out that the kind of apnea you were having, no breathing at all, not just shallow breathing, can be evidence of infection. They proceeded to do blood, spinal fluid, and urine cultures.
This led to the next, more critical, problem. There was no urine to culture. You had stopped voiding. I knew enough to know that if the kidneys shut down, it could be insurmountable, an end to everything.
They put you on a diuretic and a drug to increase blood flow to the kidneys and watched you closely, hour by hour, for urine output. The hands on the clock skipped forward, mocking our watch.
Nothing all afternoon.
Nothing that evening.
Nothing at midnight.
Finally, at 3:00 a.m., you peed. A little over a tablespoon of vital fluid. Everybody cheered.
They are still working on a diagnosis. You have been placed on a broad-spectrum antibiotic until the culture results come in. Once more, they have stopped your feedings.
Margie is nothing if not determined, and her determination was a blessing last night. She was supposed to be off for Christmas beginning at 5:00 yesterday evening. She was planning to drive straight to Chicago to be with her family; instead she postponed her trip until you urinated and she felt you were going to be okay. I sent her off with a heartfelt hug and wishes for a very merry Christmas.
Saturday, December 23
Elizabeth,
This is not a good time to get sick. Because it is Christmas week-end, the NICU is filled with unfamiliar faces, temporary nurses who are filling in for the regular staff. None of your regular nurses is here, and no one who is assigned to you knows you.
You have a preliminary diagnosis of pneumonia. They think it is bacterial in nature and therefore treatable. A heart echo showed no problems with your ductus.
They have begun antibiotics. You will stay on the ventilator for awhile, so that you do not become too fatigued from the effort of breathing.
We have just opened another present for you. You have received a steady stream of Christmas gifts this week from the many people who love you. This one is from my parents. It is another angel, a musical angel who plays “Have yourself a merry little Christmas . . . from now on, our troubles will be out of sight“. We hold these last words tight.
Monday, December 25
Merry Christmas, Elizabeth!
It’s nine minutes to midnight, but I wanted to write to you while it was still Christmas. You had a good day today, so we had a good day. Mostly, you slept through Christmas, occasionally deigning to open an eye to peer at one of your gifts. I enjoyed imagining you on Christmas mornings to come, waking early and tearing down the stairs.
More than anything, my heart is filled with gratitude tonight for two gifts, two babies. I am so grateful for you, my sweet girl. And I am grateful for the baby in the manger, God’s love for us brought to life.
Silent night, Elizabeth. Sleep in heavenly peace.
Day 42
Tuesday, December 26
My Elizabeth,
There is the most beautiful baby out in the hall. A one-year-old, with full cheeks, sturdy legs, two rows of tiny teeth. A baby who is beaming at the nurses, reaching for their earrings, drooling on their shoulders. A baby whose parents are radiant with pride. A baby who used to live here.
Her parents say that Keisha’s life began much like yours, in severe prematurity and sickness. They show pictures of her early days, when she weighed more in tubes and wires than in baby flesh. Keisha bears no more resemblance to these early photos than she does to a newborn opossum. The NICU parents can’t get enough of her.
We cluster around her in admiration and awe. She looks like a real baby, the kind you see in strollers and car seats everywhere you look. A real baby! The kind we all expected, the kind we all yearn for.
The nurses are always saying they can see what you will look like when you’re a little girl. This sounds very nice, but I truly can’t imagine it. Right now, honey, you bear a slight resemblance to ET. (Sorry.)
A part of me thinks that it will be this way forever, that we’ll bring in a cake for your first birthday, that you’ll say your first word, that you’ll take your first steps within these walls. I am conditioned to thinking on a small scale, to seeing your life played out on a miniature stage. Keisha is a promise. She makes me think again.
Wednesday, December 27
Hello, Elizabeth,
You are off the ventilator again. The doctors were not quite ready to remove it, but you apparently decided you had had enough and extubated yourself! (Look, Mom, no vent!) I understand that this is fairly common with premies as they grow stronger and become able to pull out the tubes. As long as you can breathe well on your own without overexerting yourself, they will leave you off of it.
So far, so good. They have had to boost your oxygen, but you have been breathing well since yesterday. The antibiotics seem to be working, and you are being fed and gaining weight slowly.
Everyone has returned home to Columbus, and the holidays are winding down. I need to think about going back to work next week. When you were born, I was working on a reference book that was due to the publisher in March, the same month you were due. I haven’t touched the book since you arrived. While the publisher is very understanding, I know they expect to receive the finished product sometime next year. Next year begins in five more days.
I am fortunate in that I can work a very flexible schedule, fitting my work around trips to the hospital. This is part-time work, too, taking me roughly 25 hours each week. I just need to activate my brain cells. I’m not exactly in editor mode these days.
Thursday, December 28
Dear Elizabeth,
Here I am again, my girl, perched by your side while you sleep. Sometimes my visits are quick. I slip in to see you for 15 minutes on my way to somewhere else, knowing I will have more time with you later in the day. Even for 15 minutes, I think my being here is important.
With your life here and my wide orbit around you, I am frequently reminded of a book from my childhood: Are You My Mother? In the story, a newly-hatched baby bird finds himself alone in his nest. Moments before he was born, his mother flew off to gather food. Although he has never seen her, the baby bird knows he has a mother and he steps into the world to look for her.
Along the way, he encounters a variety of creatures and noises, some frightening, which he mistakes for his mother, but when he finally finds her, he knows who she is. This is what I want you to know. It is why I sit here while you sleep and try to be here when you wake.
I want you to know: I am not a sharp needle. I am not a cold probe. I am not a rough hand. I am your mother.
Friday, December 29
My Elizabeth,
In addition to this journal, I keep a medical notebook for you, a running log of where you stand each day. Among other things, it helps me to digest technical information, track your progress, and note questions for follow-up. And, truth be told, I think it gives me an illusion of control over something which is ultimately out of my hands.
Here are today’s entries:
790 grams.
Several b’s, no a’s — recovered with stim.
Some desatting, retractions: Tired, septic? Needs ventilator?
O2.
Requested blood culture. Done 5:00 p.m.
Stopping IV
Up to 9cc. breast milk. Goal: 12 cc.
Getting sodium supplement.
First eye exam yesterday: Stage 1
Follow up:
Received blood, new hematocrit only 46 — what doing about this?
Check if a and b chart up to date.
Check culture results. Spinal and urine cultures, too?
12-28 head echo showed slight dilation of blood vessels. Monitor.
Saturday, December 30
Dear Elizabeth,
A couple of comments on yesterday’s entries. The initial blood culture results show no sign of infection. Your blood gases have not been good, so they are giving you breathing treatments for the next three days. To remind you to breathe, they have placed you on a tiny, oscillating waterbed. The bed simulates the natural motion you would be experiencing if you were still in the womb; this should also enhance your neurological development.
The bed moves up and down and jogs you periodically, more like a merry-go-round than a roller coaster. You are doing better today. I think you are enjoying the ride.
In terms of your eye exam, you have been diagnosed with retinopathy of prematurity (ROP). You’re at a very early stage of this disease, so I’m trying not to worry. ROP has five stages, with Stage 0 being normal and Stage 4 being complete retinal detachment –and blindness. (Actually, there are more than five stages. There is an intermediate stage called 3+; if you reach this, they must do surgery to prevent the retinas from detaching.)
Your exam showed you to be at Stage 1 which is characterized by an immaturity of the blood vessels and some twisting. The nurses tell me that they have seen many babies get to Stages 1 or 2 and stay there. I hope so. You will have a new eye test every week to see if anything has changed.
Sunday, December 31
My dear Elizabeth,
Today is the last day of the year, this momentous year in which you were born.
If anyone had told me at this time last year what the future would hold – a severely premature baby in the intensive care unit and an extremely frustrated teenager at home – I would have caught the first plane to the coast, but since I wasn’t tipped off, here I am. Where else would I go? My life abides in the NICU, where I navigate each day as it comes. Although your father is part of each day, he is also absorbed with Pam, who is negotiating a new way of life.
There are many times when I feel as though I’m in this struggle alone. People keep telling me how “brave” I am. (I think they are convinced I am either brave or in denial.)
With the best of intentions, they wonder aloud:
How do you keep going?
What if, after all this, Elizabeth doesn’t make it?
How would you cope with a visually-impaired child?
Don’t you and Tim ever question the future?
Don’t you ever break down???
And so on and so on and so on…
I’m not sure what they want from me. I think they are trying to give me room to rant and I guess they want me to think realistically about the future. Right now, I can’t do either.
I don’t have the time for angst or worry. Each day dawns with its own demands, its own urgencies. I don’t have the space to pause and speculate. I don’t have the latitude to indulge the “what ifs”. This conjecture seems such a luxury. What if you are permanently disabled or sight impaired? We would cope and carry on, my friends. We would live, in all fullness possible.
When I decided to have the cesarean section, I made my commitment to you. Now I am seeing that commitment through, step by step by baby step.
Besides, you are the brave one, Elizabeth. You are living on infant courage, sustained by sheer tenacity and grace.
Miracle Baby 