I was brought into what would be my room for the next two nights. I still remember most of the family (your grandma, nana, grandpapa, Aunt Vickie and of course daddy) all crowded in my room, all of them looking like complete idiots trying to act as if everything were simply great, as if I just gave birth to a healthy full-term. Where did they get those horrid masks with the painted on smiles? I remember that moment in time, hating them all. I was wrong to feel that way but at the time, that was just how I felt.

You were a very lucky little girl. You got to stay in the finest of establishments. The Newborn Special Care Unit at Yale-New Haven Hospital. Mommy and daddy spent the next few months visiting you and wondering if there would ever be a day that you would come home with us. We learned all about the special lights, ventilators, CPAP, nasal canula, monitors, warming trays and isolettes and all the beeps—the ones to ignore and the ones that needed immediate attention. We also became familiar with your records, the charts taped on the wall, your daily log sheet and the respiratory care check sheets. We would be introduced to many medical terms and equipment and supplies such as the stoma and an ostomy bag and TPN (your breakfast, lunch and dinner), medical terms that we would have otherwise never known about and do not feel privileged for having had the chance to be educated on them. We got first hand experience with blood transfusions, platelet transfusions, brain scans, testing for ROP, ultrasounds, apnea, pulse drops and desats. We found a way to accept the IV that was in your head (in your tiny, angelic, beautiful head!), central lines, surgeries, extremely high blood pressure and low resting heart rates. We actually became accustomed to your lungs collapsing.

Somehow we managed to wake with the sun and even allow ourselves to sleep when others slept; some days we even found hope. We found hope in every couple of grams that you gained or when we saw that your wall chart had no entries for the day. We were ecstatic when you reached two pounds. We were delighted when you were started on breast milk. We were happy that you seemed so much better after your new supply of blood. We held our breath and prayed you would do well when they took you off the ventilator—we would though end up doing this several times. We counted our blessings when you made it through surgery and again and once more (Dr. Seashore and the entire Yale-New Haven staff did a marvelous job and we are eternally grateful). We cried tears of joy when you "got promoted" to room 5 and then felt like we were going to do jumping jacks when you made it to room 2 (the going home room). We smiled and cheered and were so very proud (you couldn't even imagine how much so) when you took your first bottle (all ten cc's).

Then there were those times when we were afraid to fall asleep at night. There were days, even now to remember makes me cold and sick to my stomach. We couldn't fathom how you could get even smaller than you were at birth, but you did. We were worried when you puffed up like a marshmallow and needed diuretics. We stopped believing that you would make it without the vent (you had to be placed back on so many times) and so just shrugged when we were told that you were being tried again. We were angry when we saw that the CPAP had "broken down" your nose and that you had to be placed back on the vent as that way your nose wouldn't fall apart. I shutter remembering your first spinal tap; the second one was not any better. We were frantic when we were told you needed immediate surgery, and that there was a chance you wouldn't come through it, and we drove like heck but still didn't make it in time to see you off. We were saddened to learn that you would need to "poop" into a bag for some time (no one could say how long) and to see that part of your intestines were pulled out through your belly, just sitting there (what the heck are my daughter's intestines doing sitting atop her belly dammit!!!!!!!!!!!!). We were slapped with a second close call when you again needed to be rushed into immediate surgery (this time we were there and I could swear that as they took you down the hall, that you looked at me and were begging me to come—I wasn't allowed Nina, I wanted to, I did ask). Daddy and I, after all you tried to prove to us, almost believed that your time with us was over, when after a third surgery you would no longer breathe on your own. The doctors too worried. They wanted to test you for meningitis. Your color was so off. You had, just days before, been breathing on your own, like a big girl, no oxygen or anything and were in the going home room with a discharge date around the corner, now things were looking awfully terrible and we were told you were riding the vent—not breathing at all on your own.

We learned, we cried, we prayed, we saw real fear. We learned about you. We saw what a fighter you were. We prayed each day. We begged God to hear our prayers, but most importantly to respond to them. I yelled at God. I got caught screaming at God while in the hospital chapel (I didn't know someone else had entered the room). I asked God to take you if he was going to down the road anyway, and then I begged him to ignore my words. Daddy and I, not to mention the entire family and our friends, were emotional wrecks. I tried to go to work some days. I knew I would want to save some of my leave for the time when you came home (if you did), I had already used so much time while I was on bed rest and after you were born. Returning back to work was a disaster; I couldn't cope. I would call and check on you throughout the night and then immediately after arriving for work. If the report was good, I wanted to be with you, if it was bad I needed to be with you. We sought strength from each other, your daddy and I, but we also "hid" from each other. Daddy couldn't deal with seeing you each day for hours on end—it upset him too much, so he did what he could handle, I couldn't be anywhere other than with you. We didn't understand each other. We were afraid.

Back and forth to the hospital each day I went. Back and forth, back and forth. Find parking, cuss as there was none close by, walk down the garage, damn I forgot the breast milk, (that I faithfully pumped for you because you were not strong or big enough to take it by breast and needed it to be tube fed to you) back to the car, back through the garage again, pray that the day would be good, check the beeper (did the hospital call while I was on the way), look down realizing that I could remember where all the sidewalk cracks were and when they were coming up, walk into the hospital. Pass the guards (dare they ask if I have a pass—I am Nina's mother, I have been here for three months—WHO ARE YOU), walk into the elevator, pass everyone along the way, some who seemed to be experiencing a normal happy day—they were in a whole different time zone, others that seemed also to know how cruel the world could be. Hit number four. Step off and welcome to the intensive care unit. Yes, on the way to see you. Ask the receptionist if we could come in to see you. Ask for permission to see our child. Love the hospital. Hate the hospital. Drop off some candy for the nurses—that was the only thing I could offer the people who were caring for you. How trivial it always seemed and yet I felt I wanted them to know how thankful I was. Wash the hands. Scrub all the germs away. Scrub really hard. Scrub again. Walk towards your room. Step slowly, in fear. Pray that today would be a good day. Peek in (God forbid someone was at your side—I wondered what was wrong, forbid though that no one was near you—Why not?), enter in. There you would be. Hello Nina. It is mommy. I am here. I love you. How are you today? Straighten your shelf (with your books and toys); grab the chart (never mind that the nurses said I am not supposed to read them). Read every word. Check your report card (did you desat, or pulse drop, did you need to be bagged or was it only "a self", did you need little help or a lot, mild stimulation or more). What did the oxygen level go down to? What did your heart rate go to? I would sit and look at you. Then I would cry, pump your milk, sit for hours, maybe read to you, "Goodnight Moon", goodnight Nina. I will see you tomorrow. Then it starts all over again. Come back, say hello, check the charts, pray for a good sign from the nurse.

Get ready nurse, I have many questions. Oh I gave them a hard time. I am sure that they all hated me. I didn't mean to be such a pest. I loved each of them and will always be grateful to them. There was Jean (your first primary) who scolded me for calling too much (I did call too much though, but at the time just couldn't help it) but also who helped me to, as she said, "put things into perspective", then there was Nancy who was taking care of you during your second surgery and who gave me the advice that rather than ask if things were good or bad, to instead ask if "it was expected to know." Those simple words helped me more than she will know. There was Louise whom daddy fondly remembers as she was so kind to answer so many of his questions. Jeanne was your second primary and I thank her for letting Alex and I both spend time getting to know you and for letting us get so involved in your care (we actually got to feed, change and bath you ourselves—what a privilege!). She was great and very patient with me. All of the staff was wonderful—I will never forget any of them.