Zoe’s Pulmonary Emphysema

Lung complications are almost a given in preemies, because the lungs are the last organ to develop in the womb.  During their stay in the NICU, babies receive different kinds of support to breathe: the first step is typically the oscillator, a big ventilator that can give up to 600 breaths a minute into the lungs.  When the babies need less support, they upgrade to the conventional ventilator.  Then comes the nasal c-pap that looks like a snorkel mask and exhales air into the babies’ nose.  This is a significant step because the babies breathe by themselves.  The last support is the nasal cannula, which only provides a soft flow of oxygen.  All the systems can give more or less oxygen, 21 percent being the lowest because it is the oxygen in room air. On January 11 Zoe went from the conventional ventilator to nasal c-pap, a significant improvement because on c-pap she actually had to breathe, while with the ventilator the machine did all the work for her.  She was not happy with the change; she struggled and grimaced, trying to pull it off her face with her little hands.  The level of oxygen in her blood dropped regularly, causing her to “desat”.   When this happened she needed additional oxygen until the saturation reached the appropriate level. If a baby desats very quickly, you could see the color of her lips and skin turn slightly blue. A couple hours they had intubated her again because she had not responded well to the c-pap.  I had been warned that this sometimes happened and I accepted it without concerns.  Maybe she needed a little more time before the big step.  That was fine with me; I was not in a rush. When I entered the unit that night, I knew something was not right. Zoe was not on the conventional ventilator but on the oscillator.  Another step back.  “We had to change because she was not responding well to the conventional ventilator,” the nurse practitioner explained. “The oscillator will give her the support she needs now.”  Zoe was very active, her tiny arms and legs moving all the time in sharp movements.  She desatted frequently.  The respiration therapists kept making changes to the settings.  After each change, they drew blood from her heel to measure her reaction to the new setting.  She kept desatting. Doctor Pimentel came to talk to me.  He was one of Zoe’s neonatologists, a middle-age man from the Dominican Republic, who was usually very direct.  While other doctors used analogies to explain the medical conditions or shared stories about other patients who had suffered a similar medical history, doctor Pimentel went straight to the point. “She has pulmonary emphysema” he said.  He made a drawing of the lungs and explained how some of the alveolus were receiving too much air and stretching, risking them to eventually explode.  “She needs another ventilator called a jet.  We don’t have it at the hospital.  We ordered it and should receive it tonight.  Once she’s on it, she’ll stabilize.” A hundred questions crossed my mind: why don’t you have it at the hospital?  Is it because you barely ever need it?  Does she have some extreme rare condition?  How severe is this?  What’s really going on?  She looked terribly small and fragile in the isolette.  If only I could protect her, help her, give her what she needed.  “You’ll be fine,” I told Zoe.  “I love you.  You’re very strong and brave, and you’ll be fine.” Several hours went by.  They hadn’t been able to send the jet that night; it would arrive the following morning.  It was 1 o’clock, I was exhausted but I couldn’t leave her like that.  Finally, at almost 2 in the morning, I went home.  I woke up at 5 am and called the NICU.  “She’s had a rough night,” the bedside nurse said.  “Doctor Pimentel is at the bedside now.”  I waited for her to give me more information, but after what seemed like a long time, all she said was: “She’s had a very rough night.”  I stared at the green kitchen counter in disbelief.  “We’ll be there in a little while” I said to her.  I sat down on the floor and cried. Doctor Gisela Diaz was at the bedside when we arrived.  I hadn’t seen her since Zoe’s birth.  “Your baby is very sick,” she said. “She has severe pulmonary emphysema.  We’re waiting for the jet that hopefully will help her recuperate, but I have to tell you she’s very sick.”  The same words I had heard her say about Jean-Marc Junior. “What if the jet doesn’t work? What else can be done?” my husband asked. “We can use steroids to help her lungs.  I have to let you know though that a recent report states that the use of steroids in preemies can cause cerebral palsy.  It’s a risk worth taking, because if she doesn’t react in the following days we can lose her,” she said, her expression grave, her voice calm. “No!  Don’t you understand she can’t die?  Don’t you know that I can’t live with so much pain?  She just cannot die, she has to live.  She is the one, the baby that has to live.  Don’t you dare to say we might lose her!  Just don’t say it”, I thought, but all that came out of my mouth was a weak “No” when she asked if we had any questions.  I felt like throwing up or like going to sleep and waking up when this was all over. Jean-Marc and I waited in the family room at the end of the NICU hallway.  I stared at the big clock on the wall where 10 minutes lasted an eternity. I called my sister and I broke down as I told her the news.  It was January 12, her birthday. The jet arrived around noon and it took Miguel, the respiration therapist, a good hour to set it up.  It was a big, scary machine with numbers everywhere.  Unlike the conventional ventilator, it was impossible to know what was going on by looking at it.  “The oscillator can give up to 600 breaths per minutes – this machine can give up to 900,” explained Miguel. “This is what she needs to cure her emphysema.” “In order for to the jet to work, Zoe has to stay completely still,” doctor Diaz added. “If she moves, we have to paralyze her.”  In addition to the sedation, she received a drug to paralyze her.  As we already knew by then, everything had its downside.  “We don’t want to paralyze her all the time, because it’s not good for her and she can get very swollen,” doctor Diaz said.  We were told that her lungs were very affected and that we would most likely go home on oxygen, like many preemies do. Zoe reacted favorably to the jet but was still in a critical condition.  Over the following days, she received regular doses of the paralyzer.  Every morning and every afternoon we were shown x-rays of her lungs.  She was completely immobile, shaking slightly from the pressure of the machine, IVs on her hands and feet.  The nurses asked us not to speak to her, because when she recognized our voices she got excited and tried to move.  I felt completely useless, not even able to speak to my baby.  I spent hours sitting next to her isolette, in silence, looking at her, praying, and writing letters to her in my journal. “My dear Zoe,” I wrote, “since I can’t talk to you, I’ll write you a letter.  You look beautiful today, holding your right hand to your face as you like to do.  You will heal.  Your lungs will get better and better, you will be off this ventilator and on another machine, you will live and we will enjoy a wonderful life together.  You are my daughter and I will see you grow.  God will take care of you and protect you.  I will take care of you once you come home.  You will complete our family and you will heal my heart.  I’ve decided to quit my job and stay home with you.  I know you might require special care because you were born so early, and I am more than happy and proud to take on that responsibility and help you grow into a strong, brave, happy little girl.  One thing we know for sure is that you’ll be extremely active.  You move so much that they have to paralyze you to keep you calm.  I like to think that that means you have such a strong desire to live that you can’t stay still. The doctors say we’re moving in the right direction and that we just need to be patient because it takes time for the lungs to heal.  So, my Zoe, we’ll wait as long as is needed for you to get better.  I don’t mind waiting all the time in the world as long as you are with us and I can watch you grow.  I love you.” She requested very high levels of oxygen, at times reaching 100 percent.  She needed it to stay alive, but we were told that it could affect her eyesight and cause a disease called retinopathy of prematurity (ROP). Day after day we asked the same question: “Is she doing better?”, and day after day the doctors could not give us the answer we expected.  She was still critical, and we still had to wait and see how the emphysema resolved.  “It’s an emotional rollercoaster,” we were told over and over. “Try to take it one day at a time.” My mom helped me to focus on the positive, reminding me that every day that went by was another day that she was with us, and getting stronger and stronger.  I tried as hard as I could to remain optimistic, but I was terrified that she wouldn’t make it, and terrified of what my life would be without her.  I cried at night in bed, in the car, in the hospital hallways, everywhere except when I was next to her.   Those were the most peaceful moments. One afternoon I broke down in my bedroom – I was scared and tired of being scared, tired of praying, tired of trying to be strong, tired of writing letters to a daughter I longed to hold.  I cried as I rocked in the light blue chair I had bought to nurse the twins.  My mom kneeled on the floor and took my hands in hers. “Look at me,” she said. “She is going to live.  She’s going to live for you.  There’s not a doubt in my heart.  She will live for you.” There were also tears in her hazelnut eyes, but her voice was firm.  She was not afraid for Zoe.  She was crying for me.  I nodded and kept sobbing.  If only I could have that certainty that things would turn out well. During those critical weeks I came to appreciate and admire the dedication of the NICU bedside nurses. Zoe did not have one primary nurse, although some of them took care of her more than others. Nurses worked in 12-hour shifts, and were usually assigned 2 to 3 babies, depending on the amount of care that they required. One morning I walked in the unit, decided to see the glass half-full. “Good morning, Grace,” I said to our nurse. “How’s she doing?” “She’s stable, still getting her antibiotics, fentanyl for the pain, dopamine for low blood pressure, norcoron to keep her from moving, the diuretic twice a day, and her nutrition.  We wanted to wean the insulin but the sugar in her blood is still high so we’re keeping it,” she said. It seemed like an awful lot of things, but she was stable, and stable was good. “So, who else do you have today?” I said.  Bedside nurses were usually assigned to 2 or up to 3 babies, depending on the care they requested.  Lately Zoe shared a nurse with baby Llamas, who was in the isolette to her right, and had been born a week after her. “Today it’s just Zoe,” she replied. So that’s how critical she is, I thought. While nurses usually went from one isolette to another, stopping by at the central station to fill in paperwork, or going to the medicine room, Grace did not move from Zoe’s bedside, her eyes going from the monitor screen to the baby. The following weeks, Zoe had a nurse exclusively to herself.  For twelve hours in a row, these women tending to her, gave her medicine, and checked for the smallest indication that her condition had somehow changed.  The dedication and love they poured into their jobs never ceased to amaze me.  I tried to express my gratitude through kind words and small gifts, but I don’t think they will ever know how much I admire them. A week later, on January 22nd, when I called in one morning, I was told Zoe was back on the oscillator.  “We changed her because this will help her lungs now,” said doctor Pimentel when we arrived to unit A.  “I don’t understand,” I said to my husband. “All we’ve been hearing is that the jet is the machine that will cure her, and now all of a sudden it’s the oscillator again.” Several months later doctor Pimentel confessed to me that she had had a terrible night and they could not find the right settings for the jet. “She did not react to anything, and she kept getting worse and worse.  I knew that I had to call you to come say good-bye to her, I even picked up the phone, but I couldn’t bring myself to do it. There had to be something I could do.” I stared at him in disbelief. Had we really been that close to losing her? Not knowing what else to do, the doctor had stepped aside and prayed.  Without any logic, he gave the order to switch her back to the oscillator.  The respiration therapist asked why he wanted to do that.  “Because I don’t know what else to do,” he responded. A couple hours later, Zoe stabilized. Eventually, she started to do better on the oscillator and was moved back on the conventional ventilator that provided her with respiratory support for months. She then spent only a couple of days on the nasal c-pap before moving on to the nasal cannula and went home without any respiratory support, against all odds. “We do the best we can, but at the end of the day God is the one in control”, the doctor said. I gave him a hug and thanked God in silence. Ever since that day, I developed a habit of giving thanks as soon as I wake up every morning and before falling asleep every night.

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About Guadalupe

Mom of a 24 week beautiful girl who is now 5 years old. Love spending time with the family, reading and writing. In a nutshell... "Above all things guard your heart, for it is the wellspring of life." Proverbs 4:23
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3 Responses to Zoe’s Pulmonary Emphysema

  1. blm2397 says:

    I have goosebumos and am crying after reading this. Some things just can’t be explained. I can’t wait to read more about your sweet Zoe!!

  2. ammachado1123 says:

    Brough tears back to my eyes as always, yet lots of happines to know how well Zoe is now. She is out gift from God and is here for a reason!

  3. Natalia says:

    Guadalupe, soy compañera de trabajo de Luga, y recuerdo que ella nos iba narrando todas estas situaciones que pasaron con Zoe, y como uno lo escuchaba como lo hace cualquiera, desde tan lejos. Hoy, leyendo tu relato en primera persona, no puedo evitar emocionarme, como mamá, como ser humano. Y es preciso que te diga lo mucho que admiro esa fortaleza, y esa fé, que desde el primer momento supiste transimitir a tu hija, que es una guerrera, una leona, una chauchita luchadora. Te felicito, por la valentía de poner en palabras estas situaciones que no se comentan mucho, porque en realidad la gente no quiere escuchar los detalles dolorosos. Pero me parece, que ahí es donde están los momentos que tienen mas luz en la vida. Te felicito nuevamente. Espero el proximo post!

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