Emma in the NICU

Emma has been home from the hospital for thirteen days now. Thirteen. But, she was in the hospital, in the NICU, for 20 days. Yes, one day short of three whole weeks.

It was MISERABLE.

Long story short: She went in because of breathing problems. She stayed there because of eating problems. She left there with an informally diagnosed breathing problem: tracheomalacia. This will supposedly clear up as she gets bigger and stronger. She came home on 1/32 liters of oxygen.

Long story L O N G (for journal purposes):

I’ve had people tell me to be grateful we have NICUs these days. I’m glad. Yes. But, I’m not exactly sure Emma really needed to be there.


When she was first born, they didn’t let her spend too much time with me in the delivery room. Sad. I wanted to try to nurse her as soon as I could. But, they took her to the nursery because she seemed like she was wheezing a bit. They didn’t bring her to me for a long time.


Actually, Mark and I got to go give her her first bath in the nursery about five hours after she was born. After her bath, they FINALLY let me have her in my room.


It was at this time that I finally tried nursing her for the first time. She did pretty good. But, she seemed like she was having a hard time breathing. She was wheezing and kind of stuttering.


I called the nursery and asked them what they thought about that. They said they would come listen to her. Emma’s nurse came in. She agreed that Emma didn’t sound right. She said she was going to take Emma back to the nursery and they would evaluate her there. I was sad.

A little while later, the nurse brought her back to my room. She said they had decided something was wrong and that Emma needed to go to the NICU. She said they thought maybe Emma had swallowed some amniotic fluid and/or that she didn’t have enough time in labor to have the contractions loosen up her lungs. These were both causes of concern for a newborn.

I asked the nurse if we could have a few minutes alone with Emma before she took Emma to the NICU. I had Mark give Emma a blessing. The blessing promised Emma would be okay and she would be able to come home with us soon.

Turns out “soon” is a relative word. “Soon” in the lifetime of a 100-year-old person is definitely quick. “Soon” in the lifetime of an infant is not, it’s quite the opposite. “Soon” in the lifetime of a 32-year-old shouldn’t be a bother for 20 days. But, it was. Twenty days was too, too long.

When Emma was first taken into the NICU, they said it would likely be three days. At least, for the given diagnosis, three days was typical. At first Emma was just lying in an open warming bed, not in a full incubator, not in an open hospital “crib.” She didn’t have oxygen on her, she didn’t have an IV, she didn’t have anything on her except her diaper and some monitors that all NICU babies have.


I spent one extra day at the hospital—but not under nurse/doctor supervision. This extra day was because Emma was still in the NICU.

The next day they put her on an IV. The IV was both a type of “food” and calcium, and some antibiotics. The food kept her from needing to eat. I started pumping on April 15 so that Emma could have her liquid gold.

They also put her on oxygen when they put the IV in her.

A couple days later (sorry, I don’t remember which day it was—on or before April 18), they put an “NG tube” down her nose to her stomach. They said she wasn’t eating from a bottle from the nurses and they weren’t satisfied with my attempts to nurse her. They pumped my breast milk down the tube—forcing food into her.

About the same time they put her under bili lights because she was starting to get jaundiced. This did not concern me too much, as it seems so many babies get jaundice (like Zachary). She was only under the bili lights for two days.


The IV drip was something they were trying to “wean” her from but her vitals and weight were indicating she “needed” it. They had a number on her IV machine that fluctuated. It started at a 14, went down to a 7, went back up to a 15, then down to 5, back up to 18. It took a while to wean her.


They tried to start the IV in her right hand, but they couldn’t get it. So then they put it in her left hand. Then they put it in her feet, right then left. Then in her head, right then left sides. I hated that IV. A lot.

In the 20 days she was in the NICU, the lowest weight she hit was 6 pounds 14 ounces. Her final weight leaving the NICU was 7 pounds 4 ounces.

On April 22, they moved her from Room 2 to Room 1. I asked if that meant anything. They told me it didn’t. But, I was trying to be optimistic and hoped that it did. The babies in Room 2 seemed to be smaller on average and seemed to be under more intensive care than those found in Room 1. In fact, the morning we first found Emma in Room 1, two babies were getting ready to go home with their parents.

Overall, the NICU stay was really hard and painful. I went home on Sunday, April 17 without my baby. I went to the hospital as often as I possibly could. Most days I went three times. There were some days I went four times. And there were some days I went five times. It all depended on who was with Zachary. (That’s a whole different post.)

I would pump when I came home from the hospital. I would pump before I went to the hospital if it had been long enough. I pumped, I made hospital visits, I tried to sleep, I took Zachary to yet another person’s house, I felt helpless. From the beginning, Emma had been on a feeding schedule: 3:00, 6:00, 9:00, 12:00—both am and pm. Most of the time, I went to her 9:00 am, her 3:00 pm, and her 9:00 pm feedings.

Sunday, April 24, I took Zachary to church and dropped him off. I went to the hospital for Emma’s 9:00 am feeding. I made it back to church for sacrament meeting. A lot of people talked to me and offered sympathy. I cried a bit here and there. Stress + crying = headache. When I was driving home from her 3:00 feeding that afternoon, I started getting cold chills. Like, from the time I left the hospital to the time I got home, they went from a couple to practically continuous. My headache was major. I knew I had mastitis.

Mastitis.

Ugh. I called my doctor’s office to leave a message for the on-call physician. Turned out to be my doctor. He called me and talked to me. He called in a prescription for me. Mark went to Emma’s 6:00 feeding. My friend, Melanie, picked up my prescription and came to entertain Zachary here at our house while I burned through my fever.

It took me a couple days to feel better. I was unable to visit Emma very much on Monday, April 25. I just felt awful. I took that day to recover. Turns out, women who are under a lot of stress, not eating regularly, and/or who are pumping/nursing at irregular intervals are VERY susceptible to mastitis. All of those things would be ME.

The doctors wouldn’t/couldn’t tell us when Emma would be coming home with us. They told us that they wouldn’t discharge her until she was eating all her meals orally, wasn’t losing weight (so she could be maintaining or gaining), and be off oxygen or low enough that they could send us home with oxygen tanks.

Mark and I finally had a “Care Conference” on Friday, April 29. That’s a meeting with the NICU doctor, the case worker, and the head nurse. (Emma’s doctor was one of three doctors, just depending on who was at the hospital that day. And the head nurse was different too, depending on the day.)

At the Care Conference, Mark and I expressed our concerns. I cried, even though I tried not to. Mark didn’t say as much as I thought he would—especially considering he was the one who was angry about the NICU stay. The only thing we really decided at the conference was that Emma’s nurses should, at a minimum, TRY to feed her orally. A lot of times they were “conserving her energy” and just immediately sending her milk down her tube.

The other thing that they talked to us about at the Care Conference was that they had a room for NICU parents to use, a “hotel” room of sorts. They suggested I do a 24-hour stay at the hospital and prove to everyone, us, the nurses, the doctors, that Emma really does respond best to me. Eight feedings in a row.

So, starting with her 9:00 am feeding on Saturday, April 30, I was there with Emma for every feeding. She did GREAT! When she wouldn’t nurse, or when she would fight me, I would give her a bottle. It was strange being there in the middle of the night. But, she’s my baby and I’m glad that I had that opportunity.

At the midnight feeding, Emma reached up with her right index finger and slowly grasped and pulled the NG tube right out of her nose. It freaked me out. I called the nurse over. She looked at it, said, “Yup, she sure did.” Then she said that we might as well take the stickers off since our goal is to have Emma without the feeding tube. So, Emma’s ugly sticker mustache was gone along with the feeding tube. Hooray!!!

Sunday, May 1, the doctor told me he was so proud of both of us. He told me that if Emma did that good for another day, we could expect to take her home Tuesday or Wednesday.

Turns out, Emma is a stinker. She did NOT do that good the next 24 hours. She didn’t even do that good when I was there to feed her.

Monday morning, the doctor there (a different one from Friday, Saturday, and Sunday) told me Emma was still struggling with eating and that we should “wait.” WAIT. The doctor said Emma might be in the NICU another week, maybe even more than that.

It was also at this point that the doctor, because I had to ask her, admitted she thought there was something else going on with Emma’s breathing which affects her eating. Tracheomalacia. That is when the rings in her trachea are weak and collapse a bit on her. It makes breathing a bit more difficult, and breathing is important when eating. It affects the suck, swallow, breath rhythm. Tracheomalacia is supposed to clear up when the trachea matures. I don’t know how long that’s supposed to be.

My friend, Melanie, had said weeks before that she was pretty sure Emma had tracheomalacia. Why hadn’t the doctors mentioned it before? That’s what I’d like to know. Melanie had first noticed it because of Emma’s striderous breathing. Emma still has raspy breathing, even today.

When I left the NICU that morning, I cried. I called Mark. He didn’t seem to know how to help, so I felt even more miserable. I texted my mom and asked if there was any way she could come stay with us again. She had already spent four days with us right after Emma was born. But, I needed her again. I NEEDED someone to come stay with us for Zachary’s sake. I was at a breaking point.

Within minutes, my mom called and said she could come. I bawled when I was talking to her on the phone. I need MY mommy. Dad and McKayla brought her up Monday night. My dad and my mom met me at the door with comforting hugs when I got home from Emma’s 9:00 pm feeding that night.

Tuesday morning, when I showed up for Emma’s 9:00 am feeding, the doctor informed me that if Emma gained weight by that evening, Emma could come home with us Wednesday.

IS THAT CRAZY? The morning before the doctor, the same doctor, told me to “wait” for possibly a couple more weeks. That morning she was telling me that Emma could go home with me the next day. Apparently, Emma had gained weight and had eaten every feeding orally for more than a day and a half. This was such exciting news, a complete reversal of the day before.

They informed me that Mark and I had to learn how to do oxygen tanks, because Emma would be coming home with us on oxygen. We scheduled a 5:00 pm appointment with the oxygen provider. They were supposed to come meet us at the hospital.

Mark and I got to the hospital that night a few minutes early. We waited. And waited. And waited. The nurses were upset. The case worker was upset. Everyone was upset. Mark and I waited. Mom called me about 5:45 and said that the oxygen provider representative was at our place—at the condo! DUH. That ticked the nurses and everyone off.

So, I fed Emma while we waited for the ditz to come to the hospital. When she finally got there, it was like 6:30. She wasn’t even prepared. She didn’t know the equipment. She didn’t have a good billing statement. She was scattered. The nurses kicked us out at 7:00 even though we weren’t done with all the paperwork. But, Mark and I were happy—we were taking our baby home the next morning!


May 4, 2011, I went to the hospital for Emma’s 9:00 am feeding—and to take my baby home. Mark was at work. Mom was with Zachary. Life was GREAT!!!!