I watched Andy eat dinner. He asked me if he was being mean eating in front of me, but I had absolutely no appetite so it didn't bother me. I asked him to go back and check on Macie twice, I think. He kept going and talking to the doctors, respiratory specialist and nurses. Macie was still struggling. They told him about scenarios that might happen. I kept drifting in and out of sleep. I knew it would be around midnight before I should have all sensation back, but I wanted it back sooner.
The night nurse kept telling me to go back to sleep. What she didn't know was that I was asleep, until she knocked and came in the room every hour. When someone is on magnesium, their vitals have to be checked every hour. I wanted to ask her if she could sleep if someone was taking her blood pressure and temperature, listening to her heart and lungs and hitting her knees and feet every hour. She was very nice, and very concerned about me. She just didn't believe me that I was actually asleep every time she came in the room.
Finally at midnight, I told my nurse that I wanted to stand up. She questioned if I'd be ready and warned me that it might be too early. But I was going to go see my daughter. I used my arms to roll myself over onto my side and push myself up into a sitting position. I let my legs dangle for about a minute before pushing up into a stand. My legs felt a little wobbly, but the pain wasn't bad. (Probably because of the morphine and the IV tylenol she had just given me.) They brought a wheelchair close to me and I took about four steps toward it, turned and sat down. Andy pushed my wheelchair and the nurse held my IV stand, and we made the journey through the NICU entry and into room 4130.
There was my daughter, her face barely visible underneath the CPAP gear. Andy had warned me so I knew what to expect, but it was still an overwhelming sight. On one hand I was so sad that she had to be born seven weeks early because my body failed, and I was concerned that she might be lonely and scared. At the same time I was also so glad to live in a time when such things as CPAP machines exist.
Andy brought over some hand sanitizer for me and I reached my arm in to touch the only thing within my reach, her leg. I wanted to reassure her, but didn't know how. In my excitement to go see her, we forgot our camera. Our nurse let us use her cell phone to take a couple of pictures.
We sat like that for about twenty minutes. At that point I was so exhausted that I knew I had to go back to bed. I trusted the doctors and nurses to take care of her, but it was still very hard to leave. When we got back to the room I stood and made it back into bed without assistance. The nurse was surprised at how well I did. I was determined to recover as fast as I could so that I could go be with my daughter, and I knew that moving around as soon as I could was key to that.
Andy situated himself in the daybed in my room and we both tried to sleep. I was interrupted every hour for vitals, but Andy slept through all of it. He was exhausted from his week of being a single dad and the roller coaster we'd experienced over the previous two days.
Then there was a different knock on my door just after 5am. Dr. Lawson, who was at Macie's delivery and was the neonatologist caring for her that first day, peeked around the curtain and asked if he could enter. He turned on one of the lights, pulled up a chair and sat down. He asked if we could wake Andy, and it took us 3 or 4 tries to rouse him. Dr. Lawson looked very tired and concerned, and I knew that I was about to get some unhappy news.
He proceeded to explain what had happened in the nearly 12 hours since Macie's birth. Macie came out screaming, and screamed for some time. Once she got into the NICU, she continued to struggle to breathe. What we did not know at that time was that she lacked enough surfactant in her lungs. Surfactant helps to soften the lungs and gives them flexibility as we breathe. Macie had been placed on a CPAP machine shortly after birth, which applies continuous positive pressure to the lungs. However, because her lungs were not flexible enough, she wasn't able to produce enough negative pressure to maintain her breathing. She was essentially working very hard to breathe and her lungs were not able to keep up. She had developed a pneumothorax in her left lung. In layman terms, this is a collapsed lung. The doctor had gone in and made a pinhole in the lung to try to relieve the pressure and let out the accumulated air from her chest cavity. It had not worked. He was in my room to gain consent to perform two surgical procedures on my daughter. She first needed a chest tube placed in her left side to help drain the accumulated air. Then, they needed to intubate her so that they could apply surfactant to her lungs to help prevent additional complications.
It is hard to explain how I felt as he finished telling us what they needed to do. I wasn't scared or worried, even though I should have been. I was a bit numb, and I'm pretty sure I was in shock. I think Andy felt the same way. We told him to go ahead and do what was needed to help our daughter. He told us that the procedures were sterile and that Andy could wait outside the room if he wanted.
Andy went to go visit Macie at about 7am that morning. When he came back he had more news. They had put in the left chest tube and intubated her. But her sats had continued to fall. They had intubated her again and placed her on a ventilator, which Dr. Lawson had told us may happen. She was receiving 100% oxygen through the ventilator and her sats were still not maintaining where they needed to be, in the 90's.
At this point I was still on the magnesium and not able to eat food, but I had graduated to juice. I got up out of bed as soon as I could and journeyed back over to my daughter. She had more equipment around her than in my previous visit, but I could actually see more of her face because the ventilator was much smaller than the CPAP. We spoke with the nurse and the doctor, and were asked not to touch her because of the sensitivity of the new equipment and her fragile condition. She had a new bag on her IV stand that was supplying morphine to help with the pain. My poor less-than-one-day-old baby was already on morphine. We stayed as long as I could manage, staring at the monitors, and willing her to improve. After some time an X-ray machine showed up at her door and we were asked to leave so that they could do a chest scan. We went back to my room.
I felt my first hunger pangs and the nurse convinced me to try to eat. Orange jello was what I first tried. I still felt good an hour later, so we ordered lunch from the cafeteria. Of all things, a grilled cheese sandwich sounded good. I was advised to eat whatever sounded good, so a grilled cheese sandwich came to my room. It was tasty and I ate most of it. After that, I was allowed to eat whatever I wanted. I took eating pretty slow for the next two days.
Shortly after lunch time a second chest X-ray showed that Macie had developed another pneumothorax in her right lung. The pinpoint hole procedure was also not successful on the right side. Macie had another chest tube installed to drain the accumulated air and fluid from her other lung.
She was less than a day old and had already had four surgical procedures. This was not what any of us expected to happen with my 33-week gestation daughter, especially considering that I'd received the steroid shots.
I made two more visits to Macie that day. Every time we went there another person would be in her room, a piece of equipment would be added, or an X-ray machine would be rolling away. Everyone was willing her to improve. She had so much equipment both inside her bed and out. It was unbelievable to me that they could do what they had done to help her.
My nurses and doctors were surprised at how well I was moving less than 24-hours after my procedure and while still on magnesium. They didn't know how determined I was to get to my daughter's room. The only pain medicine I had throughout the day were three doses of IV tylenol. Yes, I was in some pain - but it was tolerable. When we hit the 24-hour mark I was finally taken off of the magnesium. It took another 24 hours for me to feel normal again.
I remained a bit detached that day. In my head I knew that I should be scared and worried, but I wasn't allowing myself to experience it. I was there for her as much as I could be, but I think I knew that I wouldn't be able to recover and be there if I let the emotion overtake me.
We ended the first 24 hours with our daughter's life being supported by two chest tubes and a ventilator. After the second chest tube had been installed they were able to lower the oxygen being supplied through the ventilator from 100% to 50%. It eventually crept back up to the 60's and the 70's, but she started to maintain her sat levels there. Dr. Lawson had told us that respiratory distress typically follows a pattern. First, the baby gets worse for a couple of days, and then they start to get better. We prepared ourselves to watch her struggle for the next few days, and hoped that no additional equipment would be needed.
The next day, the neonatologist on staff told us that it had been years since they had seen two chest tubes required by a baby of any gestational age. And two weeks removed from her birth, Dr. Lawson told us that it was actually a textbook case of what happens when a very strong 33 week old is born with underdeveloped lungs. Because she was so strong, she just breathed too hard for her lungs to handle.
Thank heaven for modern medicine.
When I entered the hospital, I started updating friends and family through Facebook and emails. I asked for as many prayers and positive thoughts that people could give. I am still amazed at the response that was received. My daughter had at least 150 people rooting for her, and that is just what I know of through comments and messages. Many people put me and my daughter on prayer rolls and took additional measures to give us more support. I believe that effort is just as responsible for the success of those first 24 hours as anything.
My Macie proved to be a fighter from the very beginning. And she was already adorable to me. She had long hands and feet, and was already very active with her fingers and toes. She had more hair than I thought she would, considering that she was seven weeks early. And I could just tell that she was strong. Macie has proved how strong she is as the next weeks unfolded.
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