Lucien’s NICU Story, Continued

The other day I left off on Lucien’s story when he was exactly one day old. I was almost overwhelmed with feelings of helplessness. He was stuck in the NICU and there was nothing I could do about it, he had tubes and electrodes and I was not able to hold him constantly as I wanted, and it all seemed to be a very frightening and unkind experience for a baby just out of the nurturing environment of his mother’s womb. I had planned the most gentle birth and post-partum period possible. I had planned to give him vitamin K orally, so that on the day that he was born he would not have a single poke, shot, or bit of unnecessary discomfort. Instead he was poked repeatedly by nurses checking his blood sugar, bilirubin, and other stats. He still has some of the scars on his heels today.

But on the other hand, I had this feeling of incredible exuberance, that I had such a wonderful, perfect baby, and that there was really nothing seriously wrong with him, despite his early arrival. And I found many small successes in which to rejoice – when I pumped and got a few milliliters of colostrum instead of a few drops, when he first latched (at one day old) and stayed on for a full half hour.

Meanwhile, I was supposed to be in bed resting one floor up. It became a joke among the doctors and nurses how I was never there – nurses would work their whole shifts and not see me to take my vitals, which was, I guess, one of their job requirements. I continued passing clots and my doctor ordered lots of bloodwork on me. (Yep, I had almost no red blood cells, but I already knew that, and I was not going to let it stop me.) She admonished me to take it easy – I ignored her – and insisted that I be in my room the next time that she came for rounds. Otherwise, she threatened to call down to the NICU and have the nurses there send me up.

One of the hardest things when I returned to my room each time was walking past the nursery. The hospital where I delivered encourages parents to room in with their newborns, but they still provide a nursery. And parents – a lot of them – simply drop their babies off there and allow the nurses to care for them. I would have given anything to have my baby with me, and I had to walk past a nursery full of all of these healthy, full-term babies, voluntarily left there by their parents.

The second evening of Lucien’s life was probably the most traumatic for me. He intensely disliked his feeding tube (Who could blame him?) and attempted to pull it out. The nurses had to rip off the tape on his face, stick the tube back down his nose, and replace the tape. All I could do was watch and stroke his head through a hole in the isolette as he screamed. Such much for gentle birth choices. I was crying more than he was. That was the first time I really had any sort of a meltdown, but it was a doozy. Tears and snot dripping down my face, and my husband trying in vain to comfort me. I remember feeling bad for Nick – I am sure the poor guy saw way more bodily fluids from me than he really wanted.

Later that night we found out that he had a bit of jaundice and had to go under phototherapy lights to get his bilirubin levels down, which meant that I could hold him even less. I stayed with him all that night with one hand in the isolette, talked, sang to him, and read to him from an issue of Time magazine I had found in the waiting room. We read through the articles and discussed. (Incidentally, this was the issue with Dr. Oz talking about food and nutrition, so we had lots of points to debate.) Because of the phototherapy he had to have his eyes covered with protective sunglasses, which he hated and constantly tried to pull of his face, and which eliminated yet another avenue of mother-child bonding – eye contact.

But I asked a very sympathetic nurse if I could perhaps hold him skin to skin and she could position the phototherapy lights over the both of us. I thought it was a pretty creative solution, and she consented, and positioned the lights over my rocking chair, so that they shone down on his bare skin and mine. I figured that a little phototherapy would not do me any harm.

I had to leave the NICU for a short period of time the next morning – both to placate my doctor, and because the NICU doctors were closing the unit for rounds – but the nurses promised that they would take care of Lucien while I was gone. So I left long enough to see my doctor, and eat a bit of breakfast. When I returned he was alone, screaming in his isolette, and nobody was taking care of him, so I decided that was the last time I was going to leave him alone. From then on either Nick or I were with him constantly.

And I started my campaign to get him home. I was so thankful – but also so frustrated – because I knew that there was nothing wrong with him. Had I managed to lie about my date of conception and convince them he was a few weeks older, they would have discharged him like any other term baby. He never really needed the feeding tube – I could have fed him via syringe had they let me, and he was already nursing at 24 hours old. The jaundice he experienced is common even in term babies, and the hospital generally provides them with phototherapy equipment to use at home. He was not terribly small, had no episodes of apnea as the doctors claim babies his age do, and he had no trouble maintaining his temperature.

There were several boxes that had to be checked off in the nurses’ log books before he could be discharged. He had to maintain his temperature in a crib, so I pushed the nurses to get him out of the isolette, wrapped him up in warm clothes and blankets, and got his temperature at 3-hour intervals. He had to prove he could sit up in a car seat for an hour with no episodes of apnea, so I had Nick bring up his car seat from the parking garage, and I strapped him in, wires and all, for a one-hour period. He had to lower his bilirubin levels, which he did by day five. He had to prove that he could gain weight, and he had to nipple-feed all of his milk.

Lucien is starting to wriggle in my arms, so I sense that nap time is almost over and feeding time is close at hand, so in my next installment I will talk about feeding him in the NICU and taking him home.