Wednesday, November 3, 2010

Watch and Wait

This has become my new mantra. Watch and wait. We seem to do a lot of both when it comes to our little girl. As we have said in recent posts, it is ironic that Aurelia's heart is not the issue that continues to keep her in the hospital. The problem lately has been her breathing and I was really looking forward to getting some answers.

Yesterday Aurelia went for a test where they took a bunch of pictures while she breathed (at Flouroscopy). They were looking at her vocal cords and trying to determine whether or not her breathing difficulties stemmed from the paralysis. Today I found out the results. She does, in fact, have tracheomalacia, which was the original suspicion. I had been told that the Ear, Nose and Throat folks did not believe that it was tracheomalacia and that they thought that all of her breathing difficulites were due to the vocal cord paralysis (or really, paresis, since they believe that the paralysis is temporary), which was why she went to Flouroscopy for the non-invasive test (rather than to the OR for a bronch, which could have involved intubation).

When Roxanne, the CICU Attending this week, broke the news to me, I could have cried. Our chief cardiologist, Dr. Svwast stopped by earlier this week and gently told me that if it turned out to be tracheomalacia, Aurelia could be facing a tracheostomy and an additional 2 months in the hospital, just to get her breathing figured out (not to mention more time to deal with feeding issues and whatever else cropped up in the meantime). So, when I heard that she did have it, I was ready to cry. Luckily, Roxanne told me that while a trach was a possibility, it was not being recommended at this time. I could still come to it, but the course of treatment right now is to watch and wait. Hopefully, Aurelia's trachea will grow stronger as she puts on weight and develops further. That could very well happen and we may never have to deal with the issue of a tracheostomy. If she does require one, she could have it for a couple of months to a year. Either way, with or without the trach, the idea is to have her trachea grow and develop. It will happen, but whether or not she needs assistance is the question. Only time will tell, which is why we continue to watch and wait.

I am happy to say that her "NEC Watch" is just about over. They decided to go with 7 days, instead of 10 and she has yet to exhibit any physical symptoms. She should be getting a new NJ feeding tube placed tonight and they will start her on very small feeds tomorrow. As long as everything looks good, they will increase her feeds bit by bit each day. Once she is back up to her normal amount of feeds, they will proceed with the swallow study (which she was supposed to have last Thursday, when the NEC was first suspected) to determine whether or not she has reflux. At that point, a decision about the type of feeding tube will be made. I have strong suspicions that she is going to need the "button" or G-tube. I met a couple of 2-year old boys at the Ronald McDonald House tonight who have buttons and I was pleased to see that they were happy and very busy kids! The fact that they need to be fed through a G-tube didn't seem to faze either one of them.

So we continue to watch and wait. Aurelia was originally sent back to the CICU to determine the reasons for her breathing difficulties. Since that has happened, it is likely that she will be sent back to the CCU (the step-down unit) again tomorrow. I have mixed emotions about it. The step-down unit is one step closer to going home. I love the doctors there (in fact, I ran into one of the fellows, Dr. Janson today and we had a good chat about Aurelia's current status. It was nice because I ran into him outside of the unit and he still recognized me, remembered all of the specifics about Aurelia's case, and took the time to talk to me), so it will be good to be under their care again. The only thing that makes me apprehensive is that in the CICU, there are nurses always present. Always in the pod. And while I know that we can reach a nurse at a moment's notice in the CCU, there is not as much attention or presence as in the CICU, which makes me a bit nervous. I trust the docs though, so if they think that the CCU will be the better place for Aurelia and her care, then that's where we'll go. Until then, we watch and wait.


  1. WOW...I was really hoping the results would come back differently. I know it is just another diagnosis that you have to deal with, but watching and waiting gets really hard. I am keeping you all in my thoughts and prayers.

  2. You are in my thoughts and prayers!

  3. Been thinking of you today and hoping the transition to the CCU and the reintroduction of food has gone OK. "Watch and wait" is a good mantra -- and when you get impatient with it know that we are all here, ready to listen and to help restore your spirits and give you a boost. I am really hoping that Aurelia's treatment will be as minimally invasive as possible, and I am sending lots of love, strength, and peace.

  4. Each step forward is a step forward, regardless of whether there is a step backward along the way. You guys are doing great.

  5. I can really understand wanting those nurses "always present." But truly being able to trust your doctors is a huge thing. You watch & wait...and love, and of course, she feels that last part most.
    I hadn't realized you had this blog, C. I am so glad I found it. ~Mary