NICU

I think the NICU is the worst place I've ever seen. Small plastic cribs neatly lined up in rows encase tiny babies hooked up to tubes and monitors. I cry as I'm wheeled up to the plastic crib encasing my tiny baby. As I peer into some of the other plastic cribs, my baby doesn't look quite so tiny. But the sight of my child with a tube down his throat and a nasal cannula taped down to his face is really too much for me to bear. He however doesn't seem nearly as upset as me. He looks almost content. I speak with Susie, Baron's nurse. She explains the blinking monitor hanging above Baron's bed. "The first line is his heart rate, the second is the oxygen level in his blood and the third is his breathing rate. He's doing great and breathing much easier. We've taken some blood to see if there's any sign of infection." I notice the tiny prick mark on Baron's foot and start crying again. I ask Susie if I can hold him. She tells me that she'll have the equipment around his crib rearranged so that I can pick him up without disconnecting any of the wires. "For now, we can open the top of his crib and you can touch him," she says. The top of the crib is slowly removed and I stroke Baron's little body and place my face close to his and tell him how much I love him and that I'm here with him. He has tiny chicken legs and feet. I know a 6 pound baby isn't all that small, but compared to Miles who was over 9 pounds, Baron seems so scrawny. All around me I can hear the sniffles and murmurs of new mothers aching to hold their babies. "Mommy is here, mommy loves you, hi sweetheart it's mommy," they whisper over the beeps and buzzes of the monitors while sticking their hands through cut out windows in the cribs. It's tragic.

I tell Boris I must have been a serial killer in my past life to deserve this. First cancer (which is enough in and of itself) but cancer while pregnant, then a baby in the NICU. Anything else? I ask him if I can jump out of the window of our room or if he could please, please shoot me. He can't. But seriously, I can't take it. I just can't. I want to die.

I'm only allowed to stay with Baron for an hour before I'm told the nurses are changing shifts and I have to leave until the night nurses arrive. "You can stay all day and all night except for 1.5 hours in the morning and early evening," Susie tells me. I weep as I'm wheeled back to my room. I tell the nurse that I'm keeping the wheelchair so that I can see Baron promptly at 8pm when I'm allowed back in the NICU. And at 8pm sharp Boris and I scrub our hands and push open the doors to the NICU and park ourselves outside of Baron's crib. I ask the night nurse if she can take the top of the crib off so that I can hold Baron. "He's connected to a lot of wires," she says. I want to respond, "no shit. I'm not blind," but I don't. I just stare at her. "Are you going to want to hold him every time you come here?" she asks. "Yes," I state. "I'm going to want to hold him every time I come to see him." And I do. I am so happy to hold him! He looks so uncomfortable with tape on his face and he repeatedly tries (and often succeeds) at pulling the nasal cannula out of his nose. I swear he gives me a look like "mom, what the hell?" "I don't know chicken," I whisper. "They're trying to get you well so you can get out of here. I'm going to stay with you until I pass out and then will come back the second I wake up in the morning."

Boris and I stay in the NICU until after midnight. I cry myself to sleep that night. I just can't believe this is happening. My 2 weeks of bliss. I only get a few hours of sleep before the nurse's assistant comes in to take my vitals. I can't understand why it's more important to take my temperature and blood pressure instead of letting me sleep. And why every few hours? I'm fine. Jesus. Plus, she kind of freaks me out and I make Boris stay in the room with me every time she enters. She is always chomping on her gum so loudly it's hard to hear anything else. But the next morning through her chomps she tells me that she hopes my son looks like me because I'm so pretty. Um...creepy? She tells me that several times. Then I think she asks me if I'm Christian, but that can't be right so I say "excuse me?" "Do you go to church?" she asks. For the love of God. I was right. "No I do not go to church," I curtly respond. Now that she thinks I'm a heathen she has nothing to say to me.

I enter the NICU at 5am sans wheelchair. The nurses seem impressed that I've hobbled over so soon after a c-section. And without narcotics. They keep asking me if I'm in pain. I probably am but everything is relative. After chemo, massive surgery isn't really so bad. Nothing is. I chuckle to myself as I tell them that I'm just uncomfortable. For as long as I can remember, whenever I would ask my mom if something hurt, she would respond "no, it's just uncomfortable." I never understood why she never seemed to think anything hurt until now. Baron's nurse tells us that he did great during the night. "He's breathing well, staying warm and his CBC was good." I'm overjoyed. I have to speak to the neonatologist, but think that surely he'll be out of the NICU in no time.

So I'm surprised when Dr. Trintou tells us that Baron's CBC was not good. "His band count was very high. Although the blood culture came back clear, he's going to need a full course of antibiotics," she informs us. Fuck. I ask how long the course is. "7 days," Dr. Trintou says. 7 days!? Please shoot me now. I start sobbing. I can barely speak through the sobs but manage to blurt out that they cannot keep him for 7 days because I start chemo in 14. Susie hugs me and wipes my tears with a tissue. One of the other nurses walks over and suggests that I be moved to the room closest to the NICU and that we try to get Baron off fluids and the nasal cannula as soon as possible so that he can room with me while I'm at the hospital.

Cancer is so prevalent that there's not a single person's life it hasn't touched. Each nurse or doctor I met at the hospital had a story to share with me about their experience with cancer. Everyone wanted to know about my experience and how I was doing. And they wanted to help me however they could even if that meant bending the rules a bit for me. And interestingly, they all wanted to discuss my hair. I think I've moved out of the military phase and now look like a Chia pet.

I will not go in to detail of all the exceptions that the unbelievable nurses and doctors in the NICU made for me as they undoubtedly violate all of the hospital's rules. I will say that I am beyond grateful to them and that I spent 3 blissful days and 2 blissful nights with Baron before I was kicked out of the hospital. Baron slept on me for 72 hours straight and I nursed around the clock (another sad irony to my situation is that Baron, like Miles, latched on immediately and breastfeeding was really easy for us). I did have to give him bottles each time he ate because we were under strict instruction to feed him a certain amount of milk. It was actually incredibly stressful and I often felt as if we were being forced to force feed Baron. To keep him off fluids, he had to eat at least 30 cc's of milk. For a 6 pound, 2 day old, this seemed like an outrageous amount of food to me, but I wanted him with me. I hated trying to get him to take more from the bottle when he obviously didn't want it. I tried to get Boris to throw any left over milk away so the nurses wouldn't know when he didn't finish the requisite amount, but he refused. Boris didn't want to cross the very same people who were going out of their way to help and accommodate us. And of course...he wanted Baron to be okay. Baron often preferred to use my boob as a pillow, but I was so happy to have the snuggle time with him that I would have given up the breastfeeding all together.

I wish there was some way to blend motherhood and science and that I didn't have choose. It's one of the tragedies of the NICU. The doctors and nurses save so many little lives with science and medicine. For the truly tiny (and early), everything is monitored and controlled. There are specific "touch times" when mothers can hold or touch their babies, but the rest of the time the babies have to be in the climate controlled cribs. I heard a devastating conversation between a new mother and the nurse caring for her 4 pound twin boys born at 34 weeks in which the mother was begging the nurse to hold her babies "skin-to-skin" as she had read so much about how touch not only promotes bonding, but growth. The nurse was explaining why the babies had to be in their cribs except during "touch time." And even mothers of larger babies who could feasibly breastfeed often aren't able to successfully do so because they can't sleep in the NICU and miss too many feedings. Their milk supply dwindles and the babies won't latch on to the breast. I realize that having their babies come home as soon as possible is the most important thing, but it's all just so sad.

Another tragedy of the NICU, in my environmentally friendly and non-toxic opinion is that the NICU is well...highly toxic. For some reason I wasn't as bothered by the frequent use of xray machines as I was by watching toxic cleaning products sprayed all over the place. I realize that cleanliness is godliness at a hospital and that ensuring as sterile an environment as possible is crucial for premature babies but there are alternatives to cleaning products with harmful and harsh chemicals. One evening when Baron was rooming with us, his nurse came to take him to the NICU for a blood test. When he returned, I commented to Boris that he smelled like perfume. Boris thought the nurse must have had a lot of perfume on and it rubbed off on Baron. I later found out that they had given Baron a bath and used (gasp!) Johnson and Johnson shampoo. From then on, I instructed each nurse who cared for Baron that he was not to have any baths (I mean he's a newborn, how dirty do they think he's getting?) and they were not to use any soap, shampoo or other products on him. Since the beginning of his little couldn't have been more toxic (chemo and antibiotics - please, please shoot me), sparing him sulfates, "fragrance," and a paraben was the least I could do.

As happy as I was to have Baron in my arms 24 hours a day, I missed Miles tremendously. Miles has had like 3 colds in his entire life so of course he gets his 4th the day I give birth to Baron. I knew that Miles couldn't meet Baron while getting over a cold, but on day 4 of my hospital stay, I tell Boris that I might die if I don't see Miles. Boris brings Miles to the waiting room of the maternity ward. I had envisioned him running into my arms yelling "mama!" I know he's not the snuggliest boy, but surely he must be beside himself not seeing me for 4 days. Okay, so maybe not beside himself, but a little sad? Not so much. Miles coolly saunters over to me (Boris dressed him in a rock star outfit complete with designer jeans, a Fender t-shirt and L.A.M.B. tennis shoes), waives and says "hi, mama." Then he proceeds to wander around the floor pointing out doors, trucks, trees, windows, babies and people. He now calls all adults "man," so as each adult walked past us, Miles would yell "hi, man!" or "a man!" When he wants something he says "have it," and he spent a long time pointing to the table lamps demanding to "have it." Then one of the NICU nurses walked by and said hello to Miles. He was apparently quite taken with her, asked her to pick him up, then murmured her name the rest of the visit. I got a few hugs from him when I fed him ice cream, but without the ice cream, he could have cared less that I was there. So sad.

The next day was day 5 at the hospital and thanks to my insurance, my time was up. Dr. Ottavi made a few phone calls to the powers at be at the hospital to see if I could stay longer. She said that moms used to be able to stay at the hospital when their babies weren't discharged at the same time. The hospital basically provides a room but no care (no medical services or food). The nurse in charge of the floor comes to tell me that she can't let me stay. She says that if she makes an exception for me, she'll have to make an exception for all of the NICU moms. "I'm not going to tell any of them," I say. "So unless you are, that shouldn't be a problem. And I am an exception because as far as I know, none of the NICU moms have cancer and won't be starting chemo next week." Silence. "Well we're also full," she says. I couldn't really argue with that one, so that was that.

Boris and I spent the next 2 days and nights running back and forth between Miles and Baron. I was at the hospital between 7 and 8 in the morning so I could feed Baron and usually stayed until 4pm, at which point my parents would come to the hospital to hold him (I wanted him held as much as humanly possible) and I'd go home to play with Miles, give him dinner and put him to bed. Then it was back to the hospital until close to midnight if we didn't pass out sooner. It was agony. Having your heart split in two is brutal and guilt racking and a total nightmare. And what made it worse was the floor was not full. Far from it. Each night as Boris and I hobbled down the hallway we passed empty room after empty room.

But 2 hellish days and nights later, Baron gets the okay to come home. I hug the nurses who cared for both of us. Boris brings bagels. There's nothing like food to thank people. "You are so strong," Susie says as she loads up our bag with wipes and diapers. We promise to send updates of Baron and then are free to leave with our son. And the nightmare is over.