Something Scary

   Today was very scary. Just one part of it that probably lasted less than a minute, but Emma passed out. Michael had seen Emma pass out before on one occasion last month, and I told him that I was so glad that I hadn't been there because I wouldn't know how to handle it. But today while the nurse and RT were lifting Emma out of her crib for me to hold her, part of the ventilator popped off and got disconnected. It was connected back together pretty quickly (probably within five seconds), but long enough that Emma freaked out and was quickly losing air while trying to inhale. She turned gray then dark purple and stopped moving, going limp. The nurses jumped into action and I wish I had watched, but I couldn't. I turned my head away and cried. I hated seeing her like that. She looked dead. Instantly I thought about how Dr. Greaves thought she wouldn't even be compatible with life, but the RT brought my attention back to today. "You can look now. She's awake." I looked back at her, still with tears in my eyes. Her eyes were open and her skin was nice and pink again. She was making a face that looked like she wondered, "What just happened?" But within minutes she was smiling and then fell asleep shortly after.
   The nurse handed me a box of tissues, but told me honestly that I might need to get used to that. "I know it's scary, but you have to be prepared for situations like that. She could pass out at home and you have to know how to help her." She knew that it probably wouldn't be just a one (or two) time thing. Maybe next time it happens I can be strong enough and watch what they do to bring her back.

  I worry about her dying. Not too often, but a lot more than I wish my mind would wander. I know that I shouldn't and that I should say a thank you prayer for every breath (whether its her own or from the ventilator) that fills her lungs and keeps her alive. I should kiss her more and tell her twice as much how special she is to me. I try to be positive for all of us and sometimes it really is pretty easy, especially if Emma is having a good day. But once in a while I dig a hole of negativity and have too many complaints. I'm only telling you this to remind you that I'm human. I feel like this blog is pretty positive and I'm trying to keep the good vibes going, but some days are really tough. It's hard having to go back to work and not be able to spend more time with her. (But since she isn't coming home yet, I am able to use the last 4 weeks of my Florida medical leave time to spend every day with her!) It's hard seeing all of the other moms get time with their perfectly healthy babies, especially when they admit that the baby was not planned for. Or even hearing other moms at the hospital gasp about how hard it was having their baby in the NICU for a couple of weeks. Michael reminds me often about how amazing it is that Emma is alive when science kind of made it seem like that wouldn't be possible. But science doesn't know everything. That's what miracles are for and we'll keep praying for more miracles.

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.