Trach Baby

  Emma had her tracheotomy on Monday, July 31st. Michael and I both got called by the nurse practitioner and left work, getting to the hospital around 10am. She loved being free of her leg splints and waved her legs all around in the air. We waited with her for about two hours until the ENTs (Ear Nose and Throat doctors) were ready. She was put into a portable incubator called a cavatron and wheeled over to Arnold Palmer. Michael and I walked behind her, but she kept her head back as if she wanted to keep checking that we were still with her. She looked so cute and although I was able to snap these sneaky pics in the hallway, I didn't get any more before she went in since that's when the doctors introduced themselves. The main guy had to be at least 7 feet tall! 

We were escorted to the waiting room and an hour later the super tall ENT told us that everything went well and showed us pictures of her throat. Part of her trach looked pinched (like a fish mouth shape) rather than being a normal round opening, which is part if why she can't breathe on her own. Another part being that her lungs are still small and developing. After walking back to Winnie Palmer and waiting in the NICU lobby for 30 more minutes, we got to see her. I wish they had warned us about the swelling. Her face was so round and puffy. It looked like she had gained 5 pounds in an hour. Michael even joked saying, "Is this Emma?" but we knew it was because of her hair and legs. 

 And then from two days later:

  The swelling went down over the week, but that Sunday she got a longer trach put in and her face swelled a little bit (not as much as it originally did). Michael's family was here that weekend, so his brother and grandmother got to meet Emma. Due to NICU renovations, Emma was moved into a different Pod as well as getting her own small isolation room. She developed a "water bug" called stenotrophomonas that is common for people with trachs, not just babies. She was put on antibiotics for it and it has mostly gone away now, but Dr. Hardy told me that everyone with a trach always has a small percent of the bug. For the time being we have to wear gloves and thin gowns over our clothes (which actually came in very handy when I held Emma after a bath and she scooted on me). Nice to know she was so cozy and relaxed!!  

  In the picture directly below which was taken on August 3rd, I almost started crying when she opened her eyes because it was so good to see. Getting her trach put in was as if she had just been born again because we didn't get to see her eyes open for a few days, so it was something we were looking forward to. Plus I like when she looks at me and really knows I am there, although I know she can smell me and hear my voice when I talk to her or the nurses. After that we had to wait for her to smile for the "first" time again, which I saw on August 11th. She closed her eyes when I came in and gave 3 really great smiles, but I didn't have my camera so I just captured it with my memory. 

 The next four pictures were taken in the isolation room of Pod 3. I felt so bad when I was holding her this night because she was having a hard time breathing on the ventilator. A lot of quick breaths rather than long, deep breaths. Her hands were moving around a lot too and I knew she was uncomfortable, but I wasn't really able to calm her down. I just held her. 

  On August 9th Emma got moved again to another room that holds her and another baby. They also switched her into a crib rather than the table bed she had been on for her 8 weeks before that. She turned 2 months old on Saturday, but we haven't taken her 2 month pictures with the big bunny yet. That day she was having a harder time so we definitely didn't want to bother her, since I want her sitting up in the picture. Last night Michael and I gave Emma a bath and changed her trach ties all by ourselves while the nurse supervised. Sometimes Emma is patient with us, other times she hates it, but she's such a trooper.  I also took her temperature and we changed her outfit. We definitely need more practice, so hopefully we will go back to visiting her together rather than separately after work or on days off. 

The current hurdle to overcome for Emma is learning to breathe well on the ventilator that she would use at home. In the past two weeks she has been switched back to NAVA several times (depending on the nurse), which she seems more comfortable on. I really hope she can come home in September.