Tuesday, October 26, 2010

A Quick Update

It has been a long time since our last post and I think that Charley and I are both feeling overwhelmed, but quite guilty that we haven't posted a decent update in over a week. We both know that this blog has a number of purposes and none of those is to add extra stress to either of us. We want to keep everyone updated, but sometime exhaustion wins out and a post doesn't happen until we are well-rested. Or maybe just better-rested.

This evening I thought I would do a quick post, just to let you know what has been going on with Aurelia. First of all, she had her cardiac catheter last Friday and while there were a couple of scary moments during the cath (her heart had to be shocked twice because it began to "flutter" a bit), she came out of it relatively unscathed. Her heart looks good. The repairs that she had during her surgery seem to be doing well. The long and the short of it is that her breathing issues do not seems to be related to the heart.

Some other events that have happened in the last few days - she is completely off of oxygen (she had gone back on it when she went for her cath and they had a bit of difficulty getting her off of it originally), which is great. Her breathing is still fairly labored and while she seems to be a belly breather, she "tugs" quite a bit when she breathes, particularly when she's worked up. I have had the pleasure of being able to calm her down on several occasions when she has been worked up. Sometimes it is hard to feel truly like a parent while your baby is in the hospital and surrounded by so many "other" people, so those moments are really special.

Her feeds is another big issue that needs to be resolved before we are allowed to go home. At one point we were told that she could go home with the tube that she currently has (the NJ, which goes into her intestines, the jejunum, to be exact). The NJ has been a huge help with her reflux and I have felt that she's a lot calmer and more serene since she's had that tube in. However, unlike the NG tube (which went into her stomach and seemed to cause a lot more reflux), it is not one that we can replace at home, should she pull it out. Because she is on continuous feeds, we would run into some real dangers if she were to pull the tube out. We'd have to get to a hospital pretty quickly and the doctors here are uncomfortable with that situation. Instead, there has been some talk about a G-tube, which goes from her side directly into her stomach (the current tube in in her nose). That would be a surgical procedure and it is not one that they suggest lightly. First of all, she'd have to go under anesthesia again. Also, while it would be much easier for us to manage at home, the G-tube is a huge commitment. Aurelia would have it for 2-4 years and while she wouldn't necessarily need it continuously during that time, she could still be "hooked up" at night and get feeds that would guarantee that she'd get the nourishment that she needs.

One funny side story that goes along with this is that I was trying to get an understanding of how the g-tube works and I asked what she would be fed during those 2-4 years (wondering about whether or not she would be able to eat table food when she reached the appropriate age) and Charley dead-panned that I'd need to pump for all that time! It was a funny moment that added a bit of levity to the conversation, which was much-needed at that moment!

It was decided that before they make a decision about the G-tube, the doctors want to give Aurelia another chance to "prove" that she has (or doesn't have) reflux. They put her on a new medication that will tone the band of the sphincter on her esophagus. This will, hopefully, help prevent reflux from occurring. They are giving her 3 days to get this medication into her system. On Thursday they are going to pull back her NJ tube back into her stomach (so it will be an NG again) and then they are going to do a Swallow Study, which will see whether or not her saliva is going where it is supposed to go. From there, they'll see whether or not she truly has reflux and then they'll make a decision about keeping NG (and sending us home with that) or putting in a G-tube (and sending us home with that).

Either way, we are getting closer to discharge. We accomplished a couple of the "housekeeping" items that needed to be done today. We went for a VCUG and an ultrasound. The VCUG was for kidney follow-up and the ultrasound was two-fold. First, they looked at her brain (to follow-up on the clot that she had in-utero). Secondly, the pulmonary doctors suggested that her diaphragm be ultrasounded, just in case a portion of it was paralyzed (since her left vocal cord is paralyzed and the two could be connected) and that was causing some of her breathing difficulties. I was able to be with Aurelia for both tests and it was another one of those "mommy moments" where I felt really proud that I knew what my baby needed when she was upset.

During the VCUG, she had to have a urinary catheter placed and then they filled her bladder with a contrast to see where the flow was going. We waited for her to pee so that they could take the pictures. When she finally did, I was happy to hear that there wasn't any reflux into the kidneys. All systems seem to be functioning normally! And then she pooped all over the table (and the technician). Another proud mommy moment :)

The results of the ultrasound were also good. The clot in her brain continues to diminish and resolve itself and her diaphragm seems to be moving, so paralysis does not seem to have occurred. We still don't understand the breathing difficulties, but we are ruling out a number of things. All good signs.

Our little girl continues to amaze us. She turned one-month old over the weekend. It is hard to believe that she's a month old already and that it has been almost six weeks since I've been home. I miss my house and my cats and the feeling of "home." Most of all, I miss having my family all together. I am happy to say that I feel like that day is coming closer. Charley and I were reluctant to set up a nursery for Aurelia prior to her arrival. We were really scared that we'd set up a nursery and then we would never bring our baby home. I think that it is safe to say that we can start thinking about how we want to decorate her room. I'm looking forward to making the choice of "Jungle" or "Zoo."


  1. What a great post, Jillian. Thanks. I'm constantly thinking and worrying about all of you and loved hearing that at least some of the challenges are being resolved. I'm thinkin' that her nursery needs lots of hearts in it. Maddie could help make some. Wishing you ALL the best. Give your little girls a big hug for me. Judy

  2. We do understand when you don't post regularly! This is a quite an ordeal and your energy needs to be there. Glad things are progressing so well and that the nursery can now be decorated! Think of you often!
    Peggy ccpl

  3. It was really nice to read your post, Jillian. I can only imagine how exhausted you must be feeling. The adrenaline starts to wear off but the pace of things don't slow. I think of you all every day and I just wish I were closer to be of better help. I love the nursery choices, btw. Lots of love and hugs to all of you...

  4. Indeed, this was a nice post! It is so great that is sounds like things are steadily moving forward for you, Charley and the girls. I can't wait to see that first picture of Aurelia in her new home. It is amazing that you have been away for six weeks already. How strange it must be for you to be going through all this and to be away from home all this time on top of it. Home is going to be a welcome place! I hope the tests continue to go smoothly for Aurelia and that they get some answers to her breathing issues soon. We think of you guys everyday. Keep up the great work and take those naps when you can!

  5. Ilene said... thinking of you all in New Milford. Our prayers are with you. We hope you get home soon.