My last narrative left off when the nurses finally let me off of bed rest for the 24-hour magnesium drip surveillance. My first stop was going to be the NICU to finally see my baby after giving birth to him the day before. I got into the wheelchair (and realized why they had me on bed rest... I think a wet noodle has more stability than my legs did), and a nice orderly wheeled me through the labyrinth of the hospital to get to the Neonatal ICU.
I got to the NICU room where my baby lay. The little plastic incubator (called an isolette) was in a private room. There were monitors everywhere, and the room was dark. The isolette had a blanket on the top of it, keeping the incubator even darker to mimic the womb. All in all, it looked like something in a sci-fi horror flick.
I sat in a wheelchair, my heart pounding. I didn't know what to expect even though I had seen pictures of him. I looked under the blanket.
Part of me was terrified. Another part of me was guilty. Still another part of me was dumbfounded. The larger part of me, however, was overwhelmed with love for him. I wanted to put him back, where he was safe and warm and nothing bad or uncomfortable would happen to him for two more months. I wanted to eat for him and breathe for him instead of a bunch of tubes. The nurse had the discretion to leave the room as tears streamed down my face.
The orderly took me to the room that I would recover in for the next 24 hours. We got settled, took a nap, then went right back to NICU. I spent all that day going back and forth from the NICU to my room. I couldn't walk at first, then I was able to shuffle on my own. I couldn't believe how the magnesium had sapped all of my strength. I could barely walk.
We were out of the woods. Everything was smooth sailing for almost two weeks. Grandparents were fawning over him and posting pictures left and right on the internet. We were all analyzing every feature, trying to figure out whose nose, ears, etc. he had inherited. We decided he had Adam's nose and my eyes - the best of both of us. He started on just a little bit of milk and then graduated to a bottle and breastfeeding. We were all exuberant with expectation and looked forward to him coming home. It seemed that he would be out sooner than his due date if he kept the course he was going.
Easter Sunday, my grandmother drove down to come to church with us and meet Elijah. We went to the service together, and then Adam and I drove home to pick up some things before we went to mom's for Easter dinner and then the hospital to see our baby. However, when we got home, there was a message on Adam's phone from the hospital. The hospital policy is "No news is good news," so the fact that they were calling us did not bode well with me. We called Elijah's nurse to get the update.
At his 8 am feeding, he had been doing great. His color looked good, he ate his food like a champ, and he had all of his usual energy. Three hours later, at his 11 am feeding, he wasn't doing so well. He had turned gray and mottled, his stomach was distended and hard, and he was lethargic. He had turned into a different baby in a few short hours. The nurse wanted permission over the phone to do a spinal tap to make sure his spinal fluid wasn't infected (to screen for meningitis - thank God it wasn't that), and then they would perform blood work and x-rays to try to diagnose him.
I wept and wept and wept (I've cried a lot in the last three weeks). All of our great hopes and comfort about his progress evaporated. I can't think of a time when my heart was more broken. I called mom and told her that this was a bad day for my grandmother to meet him. We had to eat, so we had a miserable Easter dinner with Mom and Mimi before driving to the hospital. I could barely swallow a bite, but I didn't know when I would eat again, so it seemed a necessary chore.
As soon as we arrived, the nurse in charge of his care caught us before we went into his room and told us the update. His spinal tap was clear, but his x-ray confirmed that he had what was called necrotizing enterocolitis, a malady that I have already explained in previous posts. I cried (again), and the sweet nurse gave me a hug. Adam and I braced ourselves and went into his room.
He looked terrible. He just lay there, not moving or responding to us. His skin was gray-toned and uneven. Every once in a while I could see his eyebrows go up a little, reminiscent of his wonderful, dramatic facial expressions we had gotten used to over the days we had known him, but without all the spark. He suddenly seemed so much more frail than he had looked before.
The next few days were excruciating. We had to wait and watch to see what the disease would do. The worst experiences we had were on the third day that he had Nec. He had not needed any respiratory support up to that point, but on the third day he was getting really tired. They tried to put a PICC line on him, but every attempt they made didn't take, even after three tries. Each attempt wore him out even more. That evening, he started having really bad respiratory "events," as the nurses called them. They were periods where his oxygen levels would drop (called "desaturating," or "desatting" in the nurses' abbreviation) and his heart rate would decrease dramatically. Normal oxygen levels are supposed to be at 99-100%. Elijah's would drop to below 10%. I can't remember where his pulse dropped to. The nurses would rush in and try to stimulate him back into breathing, but he was too worn out. They tried to give him oxygen, but after a while even that wasn't working. Finally, they had to intubate him and have him on a ventilator.
I was sent out of the room every time they had to do one of these procedures, so I spent a total of four hours in the waiting room. Maybe it was watching him stop breathing, but I started to panic. I kept seeing them trying to revive him from his events, and the image replayed over and over in my head. I began to despair. I stopped having the mental fantasy of bringing him home. Instead, my image of bringing him home was getting replaced by awful pictures of having to tell Adam that he didn't make it, that he stopped breathing, that the infection ate him up, that we lost him. I couldn't keep it together. I wept shamelessly in the waiting room. The nurses started to gather around me, trying to tell me that he was doing ok, that intubating him was going to keep him from working too hard, that the PICC line would keep them from having to stick him too much, that these were good things which were going to help him. They were very kind, but I was inconsolable.
The next few days showed slight improvement. On Friday, however, as I have already mentioned, we got the call that they were finally going to have to operate. The risks of this operation were way lower than if he had ruptured, and they felt very confident that (1) this was necessary, and (2) he should improve greatly once they operated and removed the sick tissue in his gut. I sat in the waiting room with my friends, waiting for news of the surgery and marveling at Phil's sudden death.
Since his surgery, Elijah has been improving wonderfully. He's breathing completely on his own again, and he's starting to act like himself again. He's getting that spunkiness back that he had before he got sick. We are blessed. I got to hold him last night for the first time in over a week. It was like a salve on my spirit. His pain has been well-managed, and the nurses have been able to back off his morphine doses.
One unfortunate result from all of this is that his homecoming has been pushed back considerably. We are unlikely to bring him home before June. He has to start over with his feedings, and it took us two weeks to get where we were the first time. They have been honest that he still might have complications once we add food again, and he can even contract Nec again. I am no longer going to get ahead of myself with his condition and progress. We have to take everything with Elijah one day at a time. If I live in any moment but the present, I could be setting myself up for another awful disappointment. So, we take it a day at a time. As Jesus said, "Sufficient for the day is its own trouble." I don't need to waste a single calorie worrying about tomorrow.
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