During our sitting time, we were glued to her monitors which told us vital information such as her heart rate, blood pressure, blood oxygen saturation level, how many breaths she was taking in a minute, how many of those breaths she initiated, and how much oxygen she was being fed through the ventilator. We would bend down to the floor to watch the chest tube equipment and check for bubbles. If no bubbles were seen over a minute every time they checked in a 24-hour period, they would be able to remove the chest tubes. We very much wanted that to happen for her because we knew they were painful.
I was pumping milk for her, which I started the day she was born. My milk came in on Saturday - two days later. I knew that she wouldn't be able to receive it for some time, but it made me feel like I was doing something positive for her. My decision to pump and provide milk for her was one of the only things in my control.
Our week was filled with nurses, doctors, specialists and equipment. We saw the doctor on staff every day so that he could update us on whatever had occurred over his shift. Macie had a nurse solely dedicated to her during this week, and I felt comforted knowing that someone was consistently in her room. We got to know all three of the respiratory specialists. We also got to know the charge nurses, as Macie's nurse needed assistance to change her diapers and check her vitals because of the amount of tubes and wires on her little body. We also spoke with the social worker and the lactation specialist. We attended a parent support group meeting that week, because I thought it would be helpful to talk to others that were in a similar situation.
Macie probably had close to 15 X-rays over the course of the week.
It was a stressful time. But I also felt relief that all of these professionals around me seemed to know what they were doing. I felt support from my husband. I was grateful for monitors that told me exactly what she was doing all the time. I was sad. I was happy. I felt cheated. I felt grateful. I felt empty. I felt blessed. I felt so many things from minute to minute, and I tried to let myself feel them as they happened so that the energy could be released.
Here is a day by day account of the remainder of Macie's first week in the NICU.
Day 3
Over the course of the day, if the oxygen mix supplied through her ventilator was dropped, Macie's blood oxygen saturation levels would also drop below the acceptable range. Her doctors wanted her to have at least 92% blood oxygen saturation, and she kept falling into the 80's. So the respiratory specialist decided to bring in another piece of equipment that would introduce nitric oxide through her ventilator. Nitric oxide can help some preemies breathe easier. The respiratory specialist then told us that Macie had just about every piece of equipment possible. The room was quite full. They had to move the second preemie bed out of the room and they then turned it into a private room, which meant that we could keep things in the room and sleep there if we wished. Here is a picture of the equipment surrounding Macie. The only thing you can't see in it are the two chest tube pieces on the floor at each side of her Giraffe bed.
This is also the day that the chest tube in Macie's left lung stopped showing bubbles. This was a great marker because it meant that the air pocket caused by the pneumothorax was likely gone and she was likely healed. The right chest tube was still bubbling intermittently and pulling out some fluid.
The best part of day 3 was that Macie was stable enough with the equipment they'd added that I was finally allowed to touch my baby. I didn't want to let go.
Day 4
When we entered the room we found Macie tanning under some blue lights. Her bilirubin level that morning, which is used to determine jaundice, was at 10. She had little blinders on to prevent eye injury but looked quite peaceful. That day they had to turn her oxygen up a little bit because she was getting upset every now and then. I try not to think about the discomfort that I would have if I had two chest tubes, a tube down my throat, and a ventilator telling me when to breathe. They increased her morphine a little bit to make her more peaceful. She developed a warm temperature that afternoon, but they believed it was in reaction to the lights and turned down the ambient temperature of her bed. She was back to normal within a couple of hours. This day was the day that Macie had the most equipment supporting her.
Macie woke up a couple of times when we were there that day. It was the first time I got to see her eyes. She stared right at Andy and I and calmed down a little bit. The nurses all loved her and said that she had a lot of spunk. She liked to grab them and play with her IV lines with her toes. It was nice to see something besides just a sleeping daughter.
Day 5
This was a fantastic day for Macie! For the first time she had some equipment removed. Her bilirubin levels dropped from 10 to 3 in one day, and the lights were taken away. They clamped her left chest tube early in the morning and then did an X-ray two hours later. The films showed no residual air in her left lung, so Macie also got to lose one of her chest tubes.
They also tried clamping her right chest tube, but that one was not ready to come out. She was able to maintain high blood oxygen saturation levels with less oxygen mixed in. She was at 96% saturation with only 28% oxygen mix. They also turned down her nitric oxide and she tolerated it well.
Additionally, Macie had her first milk on Day 5. They started her on 2ml of expressed milk every 3 hours. They put a tiny bit in her mouth for taste and then feed the rest through a tube. She gained a little since birth and weighed 4lb 2oz, although she had not yet had a bowel movement. We had another alert moment with Macie and another chance for me to touch her.
Day 6
This was another good day. Macie actually tolerated two full hours at 21% oxygen, which is normal room air. She was at 28% most of the time during our visit. They had turned down the breathing rate that the ventilator provided from 40 to 30 because Macie was initiating many more of her own breaths. Her nitric oxide was reduced to a trace amount, and then removed late that night.
Her morning chest X-ray showed that she still had a pocket of air in her right lung, so her chest tube was repositioned and appeared to be draining more effectively. They planned to attempt clamping the chest tube again the following morning. They did prepare us that it might be necessary to place a second chest tube in her right lung if the repositioning did not work. We hoped that would not be necessary.
Macie was tolerating the milk well, but when they went to move her to slightly larger feedings, she had large residuals that prevented the increase.
Overall, Macie looked better. She was already starting to be a more active baby. Most notably, her free hand was flying around like crazy. She was trying to grab at anything she could reach - her pillow, blanket, feeding tube - anything. Nurses, respiration specialists and doctors were using the following words to describe her: feisty, spunky, rambunctious, active. One nurse asked me how I handled so much movement inside of me. I didn't tell her that my first baby was so active, Macie's activity felt like nothing in comparison. She constantly flexed her toes, spread her fingers and made trouble for the medical team. I took it as a sign of her strength, and it told me that she was a fighter.
Day 7
Day 7 felt like a miracle day to us. They clamped Macie's chest tube in the early morning hours and checked her lung via X-ray two hours later. The repositioning had worked, and Macie's remaining chest tube was removed. We were ecstatic to visit her in the morning and be surprised by the sight of our chest tube-free daughter. Because she had no tubes they were also able to start weaning her morphine.
Macie was still taking 2ml of milk every 3 hours. She was not able to move up the size of her feedings because the nurses were pulling back residuals from her stomach that were equal in size or larger than her full feedings. The morphine may have been responsible for slowing her system down, and they were hopeful that once it was removed she'd be ready to start taking more. She had only had one small bowel movement since birth, and it was with the help of a suppository.
She was much more alert when we visited her. Andy took a turn comforting her during one of her awake spells.
She was doing so good with the modifications they made. She had no chest tubes, no blue lights and no nitric oxide. In addition they were able to turn down her oxygen to 26% with her maintaining about 95% blood oxygen saturation level. It was a complete turnaround.
Still, I was shocked when the doctor told us that he thought they would be able to decommission the ventilator and extubate her that afternoon. He showed us the latest x-ray of her lungs and we saw how much better they looked. It seemed too good to be true, so I didn't set my heart on it. But when I called at 9pm to talk to her nurse, I found out that she had indeed been extubated and was doing beautifully. She had been given a nasal cannula that was running at a very low flow (.2) with 40% oxygen. I went to sleep believing that when I went to see my daughter in the morning, I'd finally be able to see her face. Even better, I'd be able to hear her cry.
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