Zachary – Week One

By the middle of his birthday, Zachary was off the CPAP and had air being blown around him. He was being gavage-fed, that is, a feeding tube had been placed down his nose. He had an IV in to receive antibiotics for his first 48 hours of life outside the womb and to receive supplemental dextrose since he was working his way up to his full feed of 47 ml per 4 hours. (His first day of food was 6 ml / 4 hrs.) And he was as red as a tomato with a fairly high hematocrit!! As the red blood cells that contributed to this hematocrit are broken down, bilirubin is generated. Although he excretes bilirubin in bowel movements, there is still excessive amounts which could lead to neurological issues. So he was treated with phototherapy which helps break down the bilirubin. Zachary spent three days under the blue phototherapy light with a little eye mask on.

For the most part, Sunday through mid-Thursday were largely uneventful -- well, the big event each day was that they were steadily increasing his feeding. Zachary lost a touch of weight which was not unexpected. After two days in an open air radiant warmer, he was moved to an isolette (aka "incubator"). He spit up a few times, once in my arms, again not unexpected. We had many chances to hold him, either swaddled up or kangaroo-style. Kangaroo-style is pretty amazing – they took little Zachary and all of his cabling and tubing and tucked him inside my shirt. We got a chance to bond with skin-to-skin contact. Todd also got a chance to hold him kangaroo-style.

Zachary has been on a strict schedule – he gets cared for at midnight, 4 am, 8 am, noon, 4 pm, and 8pm. During these times, his temperature is taken, his diaper is changed, his heart and lungs are listened to, his stomach is evacuated through the gavage to assess his digestion, his belly circumference is measured, he is weighed once a day, his bedding might be changed, and if any bloodwork is needed, it is done. Todd and I get to participate in his care by taking his temperature and changing his diaper. This is awesome to get a chance to interact with him. Right after care time, we are allowed to stay in the room and be with him, but we are asked to not touch him or try to rouse him as he needs his sleep. By day 4.5, Zachary was feeding like a champ – he'd worked his way up to a full feed of 47 ml / 4 hr and out came the IV!!

Zachary had shown himself to be quite a feisty boy. When he is moved from a particularly comfortable position or during diaper changing/temperature taking, he gets upset and lets out a little whimper of annoyance. He may even start crying a bit and kicks and tries to push hands away. Thursday night, Dec 31^st, I noticed that he was not as feisty as usual. I was changing his diaper and he allowed me to with not even a whimper. The nurse told me that we was alert and seemed fine. I wasn't convinced and told her that I was concerned - it was just an observation, they won't do something invasive on him, like drawing blood, in the absence of concrete evidence that such a procedure should be undertaken (due to the risk of infection). On New Years Eve, Friday night, we arrived at the NICU and Zachary's nurse met with us immediately to let us know that he was having some trouble breathing. He was having "bradys", where he'd forget to take a breath then his heart rate would dip and his saturated oxygen levels would plummet. He would usually correct himself, taking a deep breath and getting his heart rate back up. But not all the time. Sometimes he needed a reminder…a poke in the leg to start, a back rub if he wasn't responding. As she was telling us all this, he had an extreme brady. His heart rate plunged from 150 bpm to 60 bpm. The nurse had to lift him up off the table to get him to remember to breathe. Of course, I got all emo at this point, scared out of my mind for our little baby. The nurse told us it could be because of an infection that he was now developing apnea of prematurity. She drew blood and sent it off for testing. We were allowed to take his temperature and change his diaper but not hold him. While I was changing his diaper, I noticed that his feet were cold, a possible symptom of infection in preemies (instead of fevers, they get cold). In the meantime, his erratic breathing had us all scared enough to get him back on the CPAP, thus backtracking all the way to his first few hours after birth. Also, he was given caffeine down his feeding tube to stimulate the immature center of his brain controlling breathing. We left for the night, very very concerned for our little boy. At around 5 am, after a pretty fruitful pumping session, I called the NICU to get an update. The number of spells he was having had dropped dramatically since getting the CPAP. I was happy to hear this so I went about washing up my pumping kit. A few minutes later, I heard Todd on the phone. The NICU had just gotten the results of his earlier blood work. Indeed, he had a bacterial infection. Not knowing what kind, he was immediately started on a broad spectrum of antibiotics, cephalexin, gentamycin, and vancomycin. Also, the doctors were seeking consent to perform a lumbar puncture (LP) to determine if he might have meningitis. We consented, wanting to make sure we treated his infection for the correct duration depending on if the infection was in the meninges or not. Of course, the LP carries with it its own risks. Anything invasive on our little Cupcake comes with the risk of infection, and an LP is an amazingly scary thing to think about happening on your newborn. We were called less than an hour later, the LP was unsuccessful – they were not able to draw CSF. They said he tolerated the LP well, then again, my baby was fighting an infection and was sick and tired!

We went back to sleep fitfully, with me in tears thinking of my little boy having to start his life with an infection, a CPAP, an IV, and an LP. When we went to visit him on Saturday, Jan 2^nd, he had improved dramatically. He was pissed off that he had the CPAP on and kept yanking at it to get it off his face. When I changed his diaper, he cried and kicked his little legs. I tried to comfort him with his bobo (pacifier), but he kept pushing my hand away. In short, my beloved Cupcake was back. He had an IV of nutrition to let his tummy rest from the feedings, he was on three antibiotics, but his breathing was dramatically better. He had some minor heart rate dips while sucking on his bobo which are typical of a preemie who can't coordinate the suck / swallow/ breathe combination yet. They've told us that having a baby in the NICU is like a roller coaster -- we were riding up and up for 5 days completely optimistic that further up was the only possibility, when suddenly we plummeted hard and fast. We are hoping and praying that our little coaster keeps the steady rise again, and more so, that we just get off this damn ride soon and bring our little one home.