prologue | chapter 1 | chapter 2

Over the next few hours part of me believed Brittany was going to die. The fact that I hadn’t seen my daughter made the other part of me unable to believe that I wasn’t still pregnant. Chuck and all the grandparents had visited Brittany, but I was still in critical condition and was not allowed to leave my bed. Every hour mattered to me now that Brittany stay alive. I needed to see her alive before the inevitable happened, and I would not be able to bear it if I was the only one that never got to meet her.

Twenty-four hours passed - “She’s hanging in there,” a nurse reported.
Forty-eight hours passed, “she’s a fighter,” I was told.
Three days passed before I was well enough to be wheeled to the NICU where the sick babies were kept.
Nothing could ever have prepared me for the shocking sight of my daughter. Nothing.

Inside the dome of the clear, hard plastic crib, she rested on her back - helpless and still. She looked like nothing more than a fetus laid out for a science experiment, her body withered and lifeless with her arms sprawled out like the frog I had dissected in seventh grade. She wasn’t much bigger than it, either. I had been told she was small, but I could never have imagined my hand would be bigger than her entire body.

There was no fat on her anywhere. Her nearly translucent skin just lay directly against the frail little bones that showed underneath. As I had been warned, there were many other wires, and intravenous tubes stuck to her body and in her arms and legs. Her mouth was ajar with a tube going down her throat, and her chest had a mechanical appearance. It’s rhythm of breath vibrated very fast and appeared completely unnatural. As if this weren't enough, the nurse explained that while inserting an IV in her arm, the bone had broken and was now taped down to a makeshift pop sickle stick splint. I stared at Brittany in disbelief. It was... shocking.

I took the sight of her in for only a few moments before breaking into tears. It was hard to believe that I was looking at a real, breathing person. If they hadn't told me she was alive, I would have thought she were dead. I expected them to say she actually was dead any minute, and this had all been done to give me the chance to see her before they took her away to the ...

"She's sedated," the nurse interrupted my thoughts, "that's why she isn't moving." I nodded, wiping my tears away. I’m not an idiot, I thought to myself, any person born that size can't possibly live. To anyone seeing the same small sorrowful baby I was looking at, it was obvious this child wasn’t going to live much longer.

I asked the nurse if I could touch her, feeling like this may be my only opportunity to do so while she was alive. I could tell the nurse wanted to say no, but then as if she knew Brittany was near death, too, she gave me the look of someone being granted their last wish. She lifted the revolving lid just enough for my arm to fit through, but careful not to let the warmth escape. I was instructed how to gently touch her on her foot, fingers, and head. Only a few moments were allowed to touch her before having to close the lid again. I looked closer at her head through the Plexiglas - it was smaller than a tennis ball and on it she had lots of dark brown hair. Her face wasn't wrinkled, but looked a hundred years old. Incredibly, she had little eyebrows, and even eyelashes - the nurse commented on her looking like me. I hadn't stopped crying since seeing her, and I was beginning to feel weak from standing.

Chuck said it was time for us to go, and I should tell Brittany good-bye. I was well aware I hadn't spoken to her yet. It was something I had always imagined to be magnificent. Her baby book even had a space where it asked for the “First words mother said” and next to it I had planned to write the most loving, heartfelt expressions. I knew what I had wanted to say, I had wanted to see her and tell her I loved her, but the situation I saw my beloved little girl in was too much to bear. I pressed my cheek against her isolette just to be as close to her as I could be, and found myself collapsing against the plastic and sobbing the words "I'm so sorry, I'm so sorry", over and over again until Chuck and the nurse had me sit down in my wheelchair.

I was taken to my room where I wanted to be alone and I spent the next hour in sorrow. When seeing Brittany, there had been no instant feeling of love. No motherly connection. No warmth, just sorrow. I was sorry for her she was having to struggle to live, and mad at myself for letting the doctors take her out of my body. After seeing her, I knew Brittany was going to die - if she hadn’t already. I felt so helpless. I’ve always been told that when you’re at your lowest of low moments, there is only one place to go from there - up! Having no lower point than feeling helpless, I started the climb...

Oprah calls it the “ah-ha moment” - the time when a light bulb goes off in your head, and you realize something you didn’t before. My “ah-ha” moment took me to the place I should have been at the whole time - ironically, it actually was upward!

I remembered I was a Christian, and therefore I wasn’t helpless and alone. I visualized the footprints in the sand and knew there was only one set because I could feel The Lord carrying me through my sorrow. My thoughts of sadness diminished and I realized that feeling sorry and angry wasn't going to help Brittany. I had been feeling helpless to do anything about Brittany’s condition, but The Holy Spirit reminded me I wasn’t unable to help. I could pray – so that's what I started to do.

In my heart I wanted to ask God to let Brittany live. I had thoughts of grant me a miracle, please! - I'll be the best Christian.... I'm sure He knew. Somehow, this type of prayer didn't sit well with me. It just didn't seem right - so I never actually prayed it.

The prayer that I said to him was altogether different. It was simple and released me from my instinct to try to control the situation or try to bargain with God. I told God I would understand whether He chose for Brittany to live or to die. I asked Him to help me through it, and told HimI knew He knew what was best. I received peace the instant I prayed for it. I actually smiled. There was a feeling of knowing that came over me - knowing that Brittany was going to live - knowing that everything was going to be okay. I never worried whether Brittany was going to "make it" after that. I just stopped. Brittany’s doctor came by to find out if I had any questions after having visited her, and although tears still formed in my eyes, I was able to ask her the question I felt was most important. "When will Brittany be able to come home?", I asked.

Dr. Yajnik was bewildered at the question. Her facial expression seems to say that she doesn't think Brittany will ever come home. Maybe she thinks it's just a matter of time before Brittany dies. Dr. Yajnik is a professional and she begins speaking to me in a gentle, clinical tone. "Tammy, there is a long way for Brittany to come before we can think about things like her going home,” she says. She explains that their focus right now is on Brittany’s lungs because they are the biggest threat to her life. She also lets me know that the night before, they had to put Brittany on a different ventilator, the fast beating machine I saw, called a jet ventilator. She says the technology of it is new and has only been available to the hospital a few months. If it works for her, it will keep her lungs from collapsing, while they finish growing. The doctor adds that Brittany is lucky to be born here, and now. She explains that a year prior, if a baby was born that was unable to open it's eyes, it was a natural sign that it was too young to live, and the hospital did not try to save it. It would “pass on” naturally.

I was astonished at hearing this, and almost speechless. It was such a sad thought, and I did feel fortunate that it wasn't a year ago when Brittany was born. I appreciated the information she was letting me know about the ventilator, but it hadn't answered my question. So I asked it again, but differently. "Dr. Yajnik, if Brittany progresses as you hope," (I knew she was going to), "When would you expect her to be able to come home?"

Dr. Yajnik was a little bit more blunt this time and asked me if I understood there was only a five to ten percent chance that Brittany would be able to survive the hospital stay. I told her I knew that, and she gave me the look of pity, that I really didn't understand. Then she asked me when my original due date was. I told her July 18th - four months away. She replied that I shouldn't expect Brittany home before that date and reminded me that her isolette (the plastic, covered crib) was to serve as a sort of surrogate womb that she would use until natural birth would have taken place. Then she left.

Brittany dropped weight from one pound five ounces to one pound two ounces that week. Dr. Yajnik said this was normal and that she would begin to gain weight from there. I visited her each day I was in the hospital for the remainder of my week’s stay. I made peace with the idea that I would be leaving her there for several months, but it was hard to say good bye the morning Chuck took me home - especially because Brittany began opening her eyes during that visit.

*****

Each morning I woke up and took time for prayer. I thanked God for letting Brittany live another day (the hospital would've called in the night if anything had "gone wrong") , then I dialed the hospital number to speak with Brittany's nurse. Her answer was routine. First, she told me if Brittany had a good night or not, (which was determined by how many times her heart stopped beating) then she told me how much Brittany weighed that day, and last, the percentage of oxygen she was breathing. The information is important in two ways. First, so I can determine if she is progressing, and second because friends and family members will begin calling soon to ask me how she is doing, and I will need an answer. If there is more to know, I will find it out later when Chuck and I go to visit her together. It is a daily outing, and we are fortunate the hospital is only ten minutes away.

When Brittany turned two weeks old, the doctors were surprised she had made it that long. She has three primary doctors and on one of our daily visits we spoke with the male doctor. He let us know that he is going to begin giving Brittany steroids to encourage rapid growth of her lungs. I stupidly asked if that’s going to help her (why else would he be giving it to her) and I am shocked at his answer.

"Well, I've seen babies do well with it, and I've seen babies die from it," he says honestly.

It was a little too much honesty for me! I was mortified at the thought of his treatment having only a fifty-fifty chance for Brittany to survive and Chuck and I left the hospital that day in emotional shambles. My best friend came to visit me that night and together we prayed that only good would come of the steroids. I also let her know how long Brittany will be in the hospital, and tell her I am praying for patience.
"Oh, No!," she says, "You don't want to do that!"
“Why?”, I ask.
"Because the only way to learn patience is to have yours tested!"
"Oh," I replied. Just what I need.

When Brittany turned one month old, her weight ( a whopping one pound seven ounces) had hardly changed since birth. The steroid treatments were stopped after two weeks having done their job well and worked wonders for Brittany’s lungs. Because of them, she is no longer on the jet ventilator, but is now on the regular ventilator, reflecting her improvement. In addition to the wire leads that monitor her heart rate, there are always Band-Aids on Brittany's hands and feet - reminders of the many needle pricks that she receives daily. The tube in her throat makes her unable to create sound even when she cries. She is no longer sedated either, so when she's awake, sometimes I see her move her head. The nurses reposition her body several times a day. Sometimes she's on her belly, and other times on her side or back. When I look at her, it is still impossible to believe that she is real. I spend most of the visit looking at her through the isolette until it's time to go, and then open the top to touch her and talk to her before I leave. I've found that I like to shade her eyes with my hand so that she opens them for a second or two. I wrap her tiny little fingers around my pinkie and tell her it's her momma. It's a small moment, but it makes me feel close to her nonetheless.

In my time at home I have begun sewing the bedding for her cradle and crib. Before we knew she would be a girl, I picked pastel colors of lavender with light pink and light blue to use in her room. Nursery bedding is ridiculous for our budget, so I decided to cut costs by making all of the bedding myself. The material I chose has small floral patterns as well as solids. Now that I know she's a girl I will probably lean more toward pink to decorate the walls and whenever else possible. I made her cradle comforter first, because I noticed some of the other babies in the NICU had special blankets from their parents placed on top of their isolettes and I wanted one on Brittany's. It didn't take long to make. I had bought all the material at one time, and with Chuck working at night, I would stay up sewing and watching Quantum Leap and Late Night with David Letterman into the morning.

It took four weeks for my stomach to completely stop hurting from the surgery. An additional two weeks later the incision was healed and I was able to work and drive again. With my independence regained, I could go see Brittany whenever I wanted and stay as long as I chose to! I only worked part time, and mostly in the evening hours. On days when it was possible, I went to see Brittany twice a day. Once before work, and then again after. The benefit of doing this came at the end of the night when there were always unsold bakery items that I could package and take to the hospital for the nurses and doctors. It was no small thing to them - they started to look forward to my visits. A tray of doughnuts and apple fritters were an appreciated thing to someone working the hospital night shift from 11:00pm to 7:00am! By the sixth week of Brittany’s hospital stay, I had begun to establish friendly conversation with one of her respiratory therapists that worked third shift on a regular basis. Barbara was the only one at this stage of Brittany’s hospital stay that would smile at me. I'm sure the others were all nice, but it seemed they didn't want to get too close to the parents of a patient they thought that might not make it. Barbara was honest with me about Brittany’s status and was the first person to give me encouragement that Brittany “may pull through.” Additionally, she taught me about the functions of the medical equipment Brittany was on, and how the machines affected her. Barbara and I became friends, and she suggested that I may want to consider going into respiratory therapy when I went to college one day. With my growing knowledge of hospital jargon, I found it was definitely something I wanted to think about.

*****

We started receiving bills from my doctors and the hospital once I was discharged. They were opened, assessed, and set aside in a basket on our kitchen counter. Chuck and I knew we didn't have the money to pay the doctors anything, much less the several hundred dollars at a time being asked. One bill, which was around fifteen hundred dollars, had us believing we might go to jail if we didn't figure out a way to pay it in ninety days. We worried. We didn't talk about it, but we worried. How were we going to pay the debts? All we knew to do was set one bill after the other in the basket and shake our heads in defeat.

On the day a ten thousand dollar bill arrived, I cried my eyes out while Chuck paced in worry. When later, a fifty thousand dollar bill came, we just took a deep breath and said "oh well", adding it to the impossible stack of bills we couldn’t face. Everything was suddenly put into perspective. Chuck and I weren't the kind of people that didn't pay our bills. We made out a monthly budget which included the basic household expenses and food. We had one checking account where we put all of our income together, because it was the only way to meet the bills. We made our payments on time, and money left over at the end of the month (anywhere from ten to fifty dollars) was available to use for the doctor bills. There wasn’t a lot left over to pay large hospital bills, but even with the enormous amount of bills we received, we still had good intentions of paying them. We figured all the bills would eventually end up in the hands of a collection agency, and with a little compassion, we would set up payments for the rest of our lives. The agencies would get their money even if it was only ten dollars at a time.

*****

Our whole family was on the edge of their seats as Brittany turned two months old. Her weight had begun to increase (less than half an ounce a day, but still an increase) and slowly it neared the two pound mark. My early morning phone call to the hospital was made in earnest the day I assumed she had hit the magic number. Bingo! I wanted to shout when the nurse let me know she was two pounds, half an ounce! The number was encouraging, and held a sort of confirmation to the hospital staff that Brittany was indeed going to survive her premature birth. On my visit to see her that day, her nurse even smiled at me!

Once Brittany broke the two pound mark, holding her for the first time was open for discussion. I began asking her nurse if it would soon be possible, and a few days later, we were given the needed permission from Dr. Yajnik. We hadn't known in advance, Chuck and I were just on a visit together when her nurse asked us if we'd like to hold Brittany. We were both momentarily speechless, then shortly after found the words to accept. We weren't sure how you hold or even pick up a two pound baby, but we were anxious to try!
First, the nurse bundled Brittany up in a warm blanket (about the size of a large washcloth), then gathered together all of the wires connected to her. It formed one thick cord which stuck out of the bottom of the swaddling cloth holding our small bundled up baby. The nurse checked the tension to make sure when she removed Brittany from the isolette, the cord wouldn't yank on her in any way, and with all preparations made, she lifted the small bundle with one hand, and the cords with the other.
"You get to hold her first," I insisted to Chuck.

After all, I had gotten to carry her in me for six months, I explained. He reluctantly accepted, and reached out his arms to the nurse. A questioning glance from her told Chuck that his arms were not the right way to hold his little daughter. Even bundled, she was small enough and light enough to hold in one hand. There was no way to cradle her in our arms, it was physically impossible... like cradling a stick of butter! The nurse gently placed Brittany in her father's hand, and gave him the cords to hold with the other. We were only allowd to hold Brittany for a few minutes so Chuck held and kissed her quickly. Before giving her to me he slipped his wedding band off his finger and placed it over her tiny little hand where it dangled as a bracelet. We found his size 9 ring could go all the way up to the top of her arm without even touching against the skin.
When it was my turn to hold Brittany, I found myself quietly staring at her and smiling as if in a dream. I wanted to hold her forever, being quiet gave me the opportunity to just "feel the moment." It was peaceful holding her and felt right.

Brittany only weighed 2lbs and 2ozs that day, and I was anxious to unwrap her slightly just to look at her up close. The preemie diaper fastened loosely underneath the blanket was as big as her whole body and went from between her legs to her neck. Her little arms and legs were sticking out of the sides and made her look like a turtle sticking its limbs out of it's shell! I covered her back up again, and realized I wasn't so good at swaddling. Maybe I'd get better with practice, I thought. My time holding her came to an end quickly.

“I love you,” I whispered and kissed her on her head. Then I handed my tiny little girl back to the nurse who gently laid her in the mechanical isolette womb.

Not long after that, Brittany came off the ventilator completely and began breathing on her own. She still required oxygen at a high percentage so a clear piece of plastic (which looked like the dome part of a cake dish) that connected to the oxygen chamber, was placed over her head while she lay in the isolette. The odd looking structure kept the oxygen circulating around her face where she could breathe the higher level easily. Now, able to hold Brittany once a day for a ten minute time period, we would use a miniature face mask that administered the oxygen while we held her.

Brittany had been on a piece of equipment called an apnea monitor since the day she was born. We were told it's job was to make sure her heart was beating as normal. If her heart rate slowed down too much, the monitor would beep really loud to get the nurses attention. By the time Brittany was two months old, we had conditioned ourselves not to panic when the alarm sounded. We were told that if the alarm continued for more than a few seconds, we should gently thump the bottom of her foot which would remind her to breathe and which would then send her heart rate back to normal. Apnea monitors, ventilators, o.g. (feeding) tubes, etc.. medical jargon became part of our normal Brittany vocabulary. Even the grandparents who visited her throughout the week knew how to speak our privileged language.

*****

July 9th - It started off like a normal day at the deli/bakery. A full time position had been offered to me a few weeks before, and I had taken on the job knowing the increased income was greatly needed. I arrived that day at 8:00am and was scheduled to work until 5:00pm. Somewhere around 10:00am, the phone rang. It was a call for me from the hospital. The hospital rarely ever called me, and I think this marked only the third time they had called in three months. The prior two times had just been to tell me routine information, so this day I went to the phone calmly - making it a point to set aside paranoid feelings that something was wrong that they needed to tell me. The lady on the other end of the phone introduced herself as Brittany’s nurse for the day and gave me Brittany’s routine vitals. Then she let me know that Dr. Yajnik had asked her to call me and find out if Chuck and I could come up to the hospital to talk to her about a report of Brittany’s. It was from a recent eye exam they had done. I called Chuck at home, explained the situation, and went to pick him up. On our way to the hospital, I was nervous.
"The eyes only do one thing," I told him, "If there is something wrong with hers, then it means she...", he cut me off from finishing my sentence.
"Don't think like that," he said. "Let's just wait until we get to the hospital, and let the doctor tell us what she needs to tell us. It could be nothing at all, and you would've worried for nothing," he said.

I was willing to believe him, so I kept quiet until we got there. Chuck and I held hands walking through the parking lot on our way to see the doctor. A small squeeze and a "we're in this together" glance meant more than words while we sat on the bench-like seat in the small conference room waiting for the doctor to appear. She joined us afew minutes later and quickly got to the point.

"Mr. and Mrs. Maier," Dr. Yajnik began speaking in a personal tone. She expressed how lucky we were that when Brittany was born they were able to help her. She reminded us about her lungs being so underdeveloped, and how small the chance had been for her to live. “We knew then that there was so much that could go wrong with such a little baby,” she continued, adding “and now she is doing so well.” In her pleasant, professional manner she pointed out that Brittany’s brain scans had shown no bleeding, and that her lungs had come such a long way and were now growing strong, “and she is breathing less percentages of oxygen,"she reminded us. Chuck and I nodded, at ease to hear the joyous words of now she is doing well. "However, do you remember that she still had her eyes closed when she was born, and was not ready to open them?"
We again nodded and she continued with a slightly more clinical tone.
"When babies are three months old, we run a routine eye exam on them.
Earlier this week Brittany had her eye exam which showed that she has dislocation in her retina which we call retinopathy of prematurity. It is caused in little babies sometimes by high oxygen requirements. In her case, it is a total detachment, which causes her to not be able to use her eyes functionally."
She paused for a moment, then added "I'm sorry to have to tell you this."
Chuck and I were confused with the medical jargon, so I spoke first.
"Dr. Yajnik, what can Brittany see?" I asked, with a lump forming in my throat and afraid to hear the answer.
"She doesn't have the ability to see anything," she said.
"Are you telling me she's blind?", I asked.
"Yes", she answered.

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