Saturday, February 26, 2011

Two Drama Queens and a Breathing Tube

My eyes grow tired as I wait for your promise to be fulfilled. I say, "When will you comfort me?" Psalm 119:82

Day of Life: 4


MyGoo, Doc, and I arrived in Birmingham about 12:30 this afternoon. I told Barry the day before that when I arrived, I wanted him to take me to see Tera alone. I didn't want to risk breaking down in front of all of our family and friends. He agreed and met us in the parking lot to walk me to the room. He held my hand the whole way up.
When we arrived in Tera's room, I noticed that she was so much smaller than I remember her being. She also looked so much sicker than I remembered. I was able to watch her for several minutes before eventually crying. Barry and I sat together for about an hour while he showed me all of the monitors and explained their sounds and numbers. I have no recollection of what he said, but I eventually came to learn what everything meant.
Here is a quick tour of her NICU room. This is the view from the hall and the pink bow that Jamie bought for our door.
These are the family accommodations. I spend a lot of time in the recliner.
This is the nurse's station, but we use it a good bit as well to scrub in. That's a refrigerator on the far left. We're allowed to keep drinks in there, but no food, please!
And, of course, Tera's section of the room. Her heart and respiratory monitors are on the left. The bed (called a Giraffe) is in the middle. And her IV fluids and monitors are on the right. They all make different noises, and all of them are loud.
Barry's favorite nurse, Susan, was there that day. Susan would also come to be one of my favorite people. She took such great care of Tera, even coming to visit us several days later when we moved to a new floor.
Barry was utterly exhausted. He was so glad that I had finally made it there. Of course, he wanted me there to be able to spend time with me, but the biggest reason for his relief was the fact that now I could take some of the pressure off of him. He had been dealing with beeping monitors, a temperamental Canon, and meeting new people with whom he had to trust his daughter's life. It was just getting to be too much. I'm glad I waited an extra day to come. This was going to be a big load to take over.
One of the things that Barry really wanted was for me to touch Tera. He had not touched her yet for a couple of reasons. I think mainly, he wanted me to be the first to hold her hand. He also, however, is a major worrier when it comes to germs and diseases. I think he worried that he might pass something on to her that would cause even more stress to her weak system. After scrubbing in, I touched Tera for the first time since the night she was born.
She is so tiny and fragile. The nurses warned that preemies are very prone to overstimulation, so I shouldn't rub her arms or legs. I should apply a stronger pressure when I touch her. My sister-in-law, Michele, is an Occupational Therapist, and she worked in a NICU for several years. She explained to me also that preemies love boundaries. When they kick their feet out or stretch out their arms, they're looking for something to push back and cuddle them up. I would eventually get used to this way of touching Tera, but this first time was a little awkward.
After spending some time together, we got a call that (Big) Tera's mother, Pat, and sister, Abby, had come to visit. I was thrilled that they were my first visitors. Of course, Barry had hosted dozens more before this, but these were my first. Because I was just learning everything myself, I wasn't able to explain too much to them. We mostly just sat in amazement at the fact that Tera was here, alive, and seemed to be doing well. "Wow" was said a lot.
The rest of the day was spent learning NICU rules and procedures (sounds a little like the first day of third grade). MyGoo and Doc came up to meet Tera and, of course, to provide whatever support I needed. A cardiologist came in at some point to do an echocardiogram on Tera's heart. He found that she has a Patent Ductus Arteriosis (I apologize for the spelling), or PDA. This means that the ductus arteriosis (space between her heart and lungs) is opened (patent). This normally closes naturally when a baby is born full term and takes their first big cry. Many preemies have them, so this is nothing to worry about now. Barry left soon after that just to get out and get some air.
In the early evening, Tera made her first dramatic move on me. She waited until all of my visitors had left so that I was there with only the nurses. When Susan flipped her over, Tera's oxygen tube came loose, and she extubated herself. The respiratory therapist rushed right in, followed closely by a team of doctors.
For several minutes, there was a lot of discussion about what to do next. She'd been doing so well on her oxygen, should we wait and see how she does off the ventilator? For those several minutes I stood right beside her incubator and watched my tiny baby struggle to breathe. Because all of the tubes and tape were off her face, the RT asked if I wanted to take a picture of her.
I hate this picture. All it does is remind me of her struggle and mine. Eventually, I broke down into tears and walked to the back of the room where Nonna and Poppa stood. They had arrived shorty after her extubation. It was at this point that Dr. Sims made the decision to reintubate. "We don't want to set her up to fail. Slow and steady." I couldn't agree more.
Canon was in the Family Room so I left soon after to see him for the first time since Wednesday morning. I just couldn't be in that room any more. I wanted to see Tera sleeping and peaceful, not having to fight for breaths. This just wasn't fair.
I called my parents when I got to the Family Room and asked that they come and get me. They had gone to a restaurant to give me some time with Barry's family, and my dad immediately called to the waiter "Check, please." So many emotions. It was great to see Canon, though so depressing that I couldn't pick him up and love on him. He's not much for just sitting in laps, so I just had to watch him run around like a wild man, all while feeling guilty over the fact that I was not in Tera's room with her. And then there was Barry. Shouldn't I be showing him attention, too? When all I really wanted to do was curl up in a ball by myself and cry. This is not what mothers do, however, so I forced my way through the next few hours.
My parents arrived and drove us to Bob and Jamie's house, where we would be spending our first two nights in Birmingham. Most of that evening is a cloudy haze to me. I know we ate chili that Bob made, and I know Canon and Eleanor (Bob and Jamie's daughter) played with Eleanor's kitchen set. Otherwise, I was just present that night. Barry had made the decision to go to the hospital late that night. Tera's worst times seem to be happening around midnight, and he wanted to be there to cheer her on tonight. He left Bob and Jamie's about 11:00 and returned at 2:00 a.m. the next morning. His plan worked. Tera had a completely eventless night.

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