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Waiting, Waiting, and Now What?

Saturday, April 10, 2010

The days after Michael was born are still blurry.

I remember sitting in the recovery room after my C-Section, talking with my husband, demanding to know why Michael was in the NICU. I kept asking, over and over (in between excrutiatingly painful bouts of the nurse trying to massage my uterus back into shape), "What is wrong with him?" My husband kept answering, "He has a cleft palate." That's it? A cleft palate is no reason to be in the NICU. I knew that much. Then, later, my mother and husband both told me that Michael was having some trouble breathing, and he needed to figure out how to do it before he could leave.

I didn't meet Michael that day. The nurses caring for me were stalling in bringing me a wheelchair, I think in the hopes that I would rest more before making the trip. Probably, I could have insisted, but I really did believe that the baby would be brought to my room soon enough, and we would be able to move on from this mess. I was in a right and proper state of complete denial. The kid would figure it out, and I wasn't ready yet to confront what my logic already knew: "cleft palate" does not equal, "can't breathe."

I lay in my room that day and night, with my mother and husband visiting me. I kept sending them off to be with the baby, saying, "He needs you more than I do." When I was alone, though, I would drift to sleep and then wake up gasping for air, feeling for all the world like I couldn't breathe, and nearly panicking in my efforts to get more air into my lungs. The situation got so bad that I was afraid to fall asleep at all without someone in the room to help me. I had no monitors or anything, so if my oxygen levels did start to fall, no one would know. I would sit up, waiting for my family to return, flipping all 15 channels on the TV over and over, falling asleep between clicks because I was so exhausted. I remember doing this, but even writing it out sounds absurd. I fell asleep from the time it took me to change a TV channel.

Finally, the nurse and my mother intervened, and they called the anesthesiologist up to my room. As it turns out, the problem was my pain medicine. Basically, I would get my periodic medicine dose from the pump, I would fall asleep, and my oxygen levels would drop to about 92, at which point I would wake up flailing around for air. Typically, a person would not recognize an oxygen "drop" to 92, but apparently I did. The anesthesiologist said he found that people with a history of asthma (which I had) were often sensitive to this kind of O2 drop, and since I had a history of asthma, he figured that was why I was so bothered by it.

The next day, with my own breathing problems behind me, I finally got down to the NICU to see the baby (whom we had not yet named), and at some point, I actually made my husband tell me all that had happened while I was unconscious.

From his perspective, the day was pretty frightening. He came in, kissed me before the surgery, and went to sit in the hallway. A short while later, he heard the sound of our son screaming his fool head off in the OR. Some hospital employees were walking past and asked if that was his baby in there, and he said yes. They said the really loud crying was a really good sign, patted him on the shoulder, and walked on. He waited. A few moments later, a doctor he later understood was the NICU on-call doctor and a nurse came down the hall and went into a door next to my OR room. Shortly afterward, they came back out, with our baby in an oxygen tent and began wheeling him down the hall. Of course, my husband followed, and what he saw was terrifying. Our baby was working so hard that each time he took a breathe, his entire chest caved in until it was almost flat. Clearly, this child was in deep trouble.

Chronology at this point is really hard for me to communicate, because I'm not entirely sure I ever got it straight, what with being unconsious for large parts of it, and having the pain meds and post-op fuzziness to deal with. So, I'll just focus on the key things we learned from the doctors.

Except for the breathing part, Michael's APGAR scores were very high.

One of the reasons he cried so hard in the OR was because they kept pinching him to keep him crying. If he was crying, he was breathing. When he stopped crying, the trouble started.

The oxygen tent was not helping. Lack of oxygen wasn't exactly the issue. Michael didn't need more oxygen, he needed more AIR. He was struggling to get the air into his lungs in the first place. His situation improved greatly when they placed him prone (on his belly) in the incubater and had him on a high flow nasal cannula.

My memories of those next few days are ones of fatigue and nervous energy, all wrapped up inside my body at the same time. When I was in my room, I was edgy because I wasn't down with my baby, and I kept going to the NICU despite the fact that it took a lot out of me to make the trip, even in the wheelchair. Once in the NICU, though, I didn't find I wanted to stay all that long. There were very few places to sit, and I was weak and tired. Michael's condition was stable, for the most part, and he seemed to be generally improving, and I was willing to live with that until I got back to my room, and the process started all over again.

I could go on, and on, and on with the stress of those first few days. We were fortunate enough to be at a leading Women's and Children's hospital, with a Level 3 NICU. Mothers in extremely early, unstoppable labor were often airlifted to this hospital because of their experience with micro-premies and sick babies. While all this experience might have been comforting, we had a hard time getting the nurses and doctors to recognize and remember that Michael was not premature. They treated him like a premie and were frequently surprised again and again when he didn't respond like one. Of course, his small-ish size (just under 6 pounds) didn't readily clue anyone in that he was really a full term baby with a problem, not a borderline premature baby.

I'm not saying that Michael was in any danger from the hospital's treatment. No. There is no doubt that the hospital saved his life. What I am saying is that Michael was more restricted and kept from us far more than his condition warranted, and he was sometimes not treated with the right scale or standard. For example, the NICU declared him jaundice based on premie baby standards when, as a full term baby he was not jaundice. As a result, Michael spent several days "under the lights" when he didn't need to. I could go on about how we discovered these issues, and how we rectified them, but I won't. They really don't relate to Michael's story all that much, although they did add to our stress and did give us a harsh introduction about how much truly aware parents really need to advocate for their sick children. I merely want to let it be known that it happened, and that it can happen in even the best of hospitals. We (my husband and I) have since sat down with the head of the pediatrics division of the hospital and talked about all of our issues and concerns, and we have every confidence that the hospital is taking great strides in trying to keep these sorts of situations from occuring in the future.

Two days (I think) after Michael was born, Doctor "M" came on rotation. You will remember her from my first post as the doctor that scared the crap out of me before Michael was even born. On this day, though, she redeemed herself in my eyes for all time. She came in to my room to check on me, and she asked me how the baby was doing. I responded that he seemed to be doing okay, but I still didn't know what was wrong with him. No one was really talking to me all that much. We were still waiting on some sort of answer. She stared at me a moment, then sat down on my bed. Then, she looked me straight in the eye and said, "Mom, he is your baby. You are his mother. YOU are the one in charge of him, not them. Now get out of this bed, go down to that NICU, and you demand some answers."

Holy cow.

She was right.

What on earth was wrong with me? My child was in an incubator (although he didn't need to be, truthfully). He was being kept from me, and I had no idea what was wrong with him.

At that moment, lethargic, complacent mom went away, and mamma cougar came in her place.

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