Tuesday, April 12, 2011

The NICU diaries

The first day they told us he was holding his glucose levels just fine… “He may come home a day or so after you are discharged” was the optimistic answer. I didn’t know that it was unlikely and unfounded optimism then. All I knew was that I would likely be going home from the hospital without my baby, without the little one we had waited so long to meet. I couldn’t bear the thought of it. But then again I didn’t have much of a choice.

The next morning when the doctors made their rounds, one frowned at me when I mentioned taking him home. “This week is a possibility, but I wouldn’t count on it. It’s more likely that he would go home at the end of next week, but we can’t really say at this point.”

He had just finished a feeding and had eaten 15 millileters (half an ounce). One of the other doctors pulled out an iphone and figured out the recommended feeding amounts. They put a minimum feeding amount of 35 mL on Emmett’s chart, noting that if he didn’t eat that much he would have to get a feeding tube.

The most he’d eaten was 15-20 mL. And even that much was always a struggle. Little Emmett was early, and he’d much rather take a nap than eat. Where was his floaty water to finish growing? He wasn’t a fan of this eating thing. I knew the feeding tube would happen. It wasn’t a matter of if, more like when. I hadn't known that he wasn't eating enough. I felt betrayed. I felt hopeless. I didn't want any tubes going into my baby. The monitoring wires were bad enough.

The group of doctors shuffled away as I burst out crying. I am certain I made them very uncomfortable. In between sobs I cuddled Emmett tight.

I couldn’t do the next feeding. I couldn’t even watch. I made Mike do it, but he would only do it if I promised not to be mad at him if Emmett didn’t eat 35 mL. I couldn’t imagine blaming him. But I could imagine blaming myself. So I went back to my room while Emmett had his lunch. God bless Mike, he got him to take 35 mL. I’ll never know how. He got him to do it for the next couple of feedings as well.

Of course, the nurses, even though they were saints, had less time and patience to coax feedings down his gullet. That night when we went home he got his feeding tube put in.

That night we were discharged. I had to rent a hospital pump from the gift shop and we got there just before it closed. I hate to think what would have happened if we hadn’t gotten there in time, how much harder the whole process would have been. My pump was to be shipped a month before Emmett’s due date, which wasn’t another week yet. The nurses on the postpartum floor said that you could rent them at the hospital, promising to bring me one or the paperwork for one. They finally told me that I would have to get it at the gift shop, and only informed me of that once we were leaving. Because we had a little one in the NICU, we didn’t have to leave until shortly before midnight on discharge day. We left around 6 so we could go home and walk the dog – this was the only reason that the gift shop was still open when we made our way home. Thank you, Milly.

The hospital we went to only served food on a room-service basis. You ordered the food and waited in the room for an hour before the food was delivered. No pre-scheduled deliveries at certain times. I am sure this is incredibly convenient for those whose babies are IN their rooms. For me, it was torture. Order food, wait for an hour without the little one. Counting the minutes until I could scarf down my food and make it back to the NICU. I felt like I had to choose between Emmett and feeding myself. A lot of times I put off eating as long as possible, or had Mike pick me up food from the cafeteria downstairs.

Once I got back from eating and the NICU room was too full – we already had 4 people total in the room. So I wasn’t allowed in. I stood in the hallway and sobbed. Every person that walked by asked if and how they could help me. The receptionist who had denied me entrance repeatedly asked me if she could do anything. I wanted to scream that the Mother should ALWAYS be let in, no matter what. Then, Mike sent out someone so that I could come back in. I felt embarrassed as I walked in to the room and everyone worried over me. I reminded myself that I’d just had a baby the day before, to cut myself some slack.

I talked to some friends on Facebook that had babies that were born around 35 weeks. Almost all the babies had been in the NICU for 2 weeks. I steeled myself for a stay of at least that long. I decided to look at each extra day as another day closer to bringing him home. He was going to at some point, of that I felt certain. He wouldn’t have that feeding tube in college. And if he did, it would be a sweet party trick.

I spent the days at Emmett’s side. I feel like he was in the NICU for months but in reality it was only 9 days. 2 days of which I was also in the hospital. I tucked a black and white picture of Mike and I into his bassinet. The cafeteria grill worker knew Mike’s order, I kept slippers at the hospital so I didn’t have to wear actual shoes all over the NICU floor. We sat in Emmett’s room and worked on our laptops and listened to the other babies in his pod cry. A set of twins by the window cried all the time. We marveled how all the crying newborns sounded like cats. We educated ourselves on NICU speak, how much he should eat per kilo, how much he should be gaining each day, what they expected of him before sending him home, things that may have delayed his departure. We talked to the nurses about everything under the sun related to Emmett and babies. We picked their brains constantly regarding how he was doing and what he should be doing. Each day we held him as much as possible and then said goodbye to go home and walk the dog, to feed ourselves, to catch some sleep. To wake up every three hours to pump. Every day I left him in his bassinet by himself I felt like I was failing. Failing to be there for him when he needed me. Of course, I was doing as much as I could. More than I had previously thought I could. We were the lucky ones, our baby was born just short of full-term. He wasn’t a one pound super preemie. He had no other health complications. It was crazy to feel lucky and unlucky at the same time. Hard to watch Dads wheel Moms holding babies in their wheelchair out to the car downstairs. People just going out into the world, while in the NICU, our world stood still.

Each day the eating got a little better, but still no one would comment on when Emmett could come home. Then, while I was at my baby shower with my girlfriends the Saturday after E was born, Mike sent me a picture of Emmett. The feeding tube was gone. The doctors planned for discharge on Monday, one week after I had been discharged. That morning felt like Christmas day. We had to wait around for the discharge papers to come through on the computer, and once they did the nurse walked us downstairs. Once we were in the car I couldn’t believe it. He was actually coming home. I kept waiting for someone to grab us and take him back, to say it was a mistake. But no one did. And just like that, the whole ordeal ended, our world began spinning again and there were three of us.


Anonymous said...

Awww, I was on the verge of tears the whole time I was reading this. I can't imagine how hard it must have been to leave him there every day. Thankfully that's all over. He is the most perfect little man I've ever seen, he is so lucky to have you and Mike as his parents.

Kevin said...
This comment has been removed by the author.
Kevin said...

Interesting story. On a side note - I totally recognize that elevator. However, do you know which of the 8 elevators it was?

Lindsey said...

i so appreciate your honesty and rawness (is that the right word?!?!). it must have been so difficult :-( but boy is he handsome. thanks for sharing april!