Real World

On December 18th, Luna Bell was extubated and put on a c-pap machine to pressurize the air and help her breath easily. It was exciting, but frustrating keeping that little mask on her very tiny face and dealing with all the fluctuations in her breathing rate and O2 saturation…all things that new mom’s and dad’s shouldn’t have to be thinking about with their month old baby.

She started out doing good. Then she was not doing so good and then she was flat out struggling. Her respiratory rate was high as she worked so hard for every breath and her heart rate was also high due to all that work and in turn she wasn’t growing at all. The thing that was key for Luna Bell was that we needed her lungs to grow so that she would have fresh healthy lung tissue to outgrow all the damaged lung tissue from they hydrops. She also had something called pulmonary lymphangiectasia which was also causing extra difficulties with her breathing. https://rarediseases.info.nih.gov/diseases/9900/congenital-pulmonary-lymphangiectasia

One of the signs that Luna Bell was not ready for this extubation was the fact that for hours afterwards she was inconsolable. She cried most likely due to oxygen deprivation and also because even at one month old, she knew what she could and couldn’t do and what she was and wasn’t ready for, and she wasn’t ready for this.

Part of being a mom with a child in the NICU is trying to keep a positive attitude and never let your child feel the concern and fear that you are feeling down deep. And that means hiding that from the nurses, doctors and often your partner because you can’t bear to think the worst and right now the worst I could think of was that Luna Bell would have to be reintubated. We got through Christmas and then had a rough night on New Year’s Eve-which was the day I chose to go back to work.

Before I started having problems with my pregnancy, I had about 10 weeks of Paid Time Off (PTO) and Extended Illness Benefit (EIB) hours available to me- and I was going to keep gaining about 8 hours a paycheck up until my delivery date. By the end of the year, I had exhausted about 7 weeks and decided that I better go back to work so that I would have maternity leave available once Luna Bell came home. The first day back to work broke my heart. I just wanted to be with my daughter, but I had to do what I had to do. After a day at work, I headed to Seattle Children’s to finish out a very long day by seeing my daughter one last time in 2018. She was not doing great. Her respiratory rate was high, she wasn’t happy and her primary nurse, Bella didn’t say it to me, but she was worried.

I had chosen a very bad week to go back to work. By Wednesday, January 2, 2019 Luna Bell was really struggling. While at the hospital that night she spiked a fever due to a minor infection that had started in one of her IV lines and she was miserable. It was this night that I finally said “When is my kid going to catch a break?” The nurse on Luna Bell that night was new to us, but she was amazing. She helped me help Luna Bell to get comfortable and finally around midnight her fever broke and she finally fell asleep. The nurse told me that the next morning she was going to really advocate for my daughter with the doctors-and that the best thing for Luna Bell may be to reintubate her. I agreed, while screaming “NOOOOO!!” inside, and finally went home to eat something, get about 3 hours of sleep and go back to work.

The next day the nurse called me to let me know that the doctors were looking at all the options and that by the end of the day we should have a decision on what was going to be best for my girl. I thanked her for everything, finished pumping breastmilk and went off to work.

By the end of the day the medical staff came up with a plan: The only way to give Luna Bell a chance to rest her body and not work so hard on breathing, was to reintubate her. They were going to turn up the volume and calories on her feeding and get her to grow. This was the best chance for her to grow some new, healthy, strong lung tissue so that she would be ready to be extubated the next time.

The decision to put a breathing tube back into your child’s airway and see her face all taped up again is not an easy one. But when you know it’s the only way she is ever going to be breathing on her own someday, you have a make the difficult decisions.

In 10 days, she gained over a pound. In two weeks nearly two, and she had grown a couple of inches. After 3 weeks, on January 22nd, Luna Bell was extubated for what would be the last time. She was happy to have the tube out of her throat, she was calm, she was relaxed and happy to have mommy and daddy hold her and we almost got her to smile. This was the time and growth she needed to be ready to conquer the rest of the battles ahead of her. This was one step closer to getting her home. Her time at Seattle Children’s was now at two months four days. Our time with her was precious every day. With being back at work, Kevin spent the days with her until he had to go to work in the evening and I would go to work then to the hospital, then home between 10-11:30 depending on how good Luna Bell was doing, to do at least one load of laundry or clean up the kitchen or just fall down and eat something before passing out. I was exhausted all the time, I was stuck in a bad situation at work, where my co worker was constantly out of the office and I had to cover for her, and all I wanted to do was sleep for maybe eight hours at a time. But it was not to be. You do what you have to do to take care of your life, and now your helpless baby, no matter how exhausted you are. And this level of exhaustion, this crazy schedule, and this constant feeling of being on high alert was not just a dream-no, nightmare-this was real life.

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