Sorry for taking so long to send out an update. I know several of you have been wondering what’s been happening during the past week after Zoe Beth’s trache. Zoe’s doing just fine, and mom and dad are adjusting ok. We definitely realize that this is the best thing for Zoe’s future development; but I think because the trache now extends our “experience” out by maybe another year, it definitely takes the wind out of you a bit when you were hopeful for only another month or so.
Anyways….Zoe has not moved off of the ventilator as quickly as we had anticipated. Over the past week, the doctors have alternated Zoe between pressure support on the ventilator (machine gives Zoe a burst of pressure for each breath she takes) and CPAP (machine gives Zoe a constant pressure, regardless of number of breaths, and at a much lower pressure rate than the ventilator). In other words, every eight hours, Zoe would be on the vent for six hours and CPAP for two…or the vent for four hours and CPAP for four hours. They had hoped to let her try breathing some through an artificial nose – a filter-type device that is put on the trache that will act as a replacement for her own nose in filtering out dust, bacteria, etc. when she breathes room air through the trache. Today, however, they’ve put her back on full time pressure support. She just hasn’t been handling the going back-and-forth between the methods too well. Occupational therapists have been working with Zoe to begin teaching her how to eat from a bottle. They’ve begun dipping her pacifier into milk to allow her taste buds to begin the “taste” sensation, as well as begin to teach her that she can feed through her mouth. At this point, they’re just trying to keep her interested in the pacifier, and not let her develop an aversion to feeding through her mouth. Unfortunately, they can’t begin really trying to feed her until she is off of the ventilator and CPAP.
Zoe’s up to 8 pounds these days. At one point she hit 8 lbs and 4 oz, but she slipped back to 8.0 for the weekend.
There are lots of new updates at www.zoebeth.com these days. If you’ve visited in the past week, you’ve noticed we added a video page. Right now we have a great clip of Dad teasing her with the pacifier. Also, we’ve put up the video of Zoe’s laser surgery from back in April – it’s a pretty large file, but very interesting to watch. We’ve updated the picture album with some recent pics. Today we’re also opening up a message board on the site. Right now we have two forums – one for discussions about Zoe Beth, and another for people to share their stories about their preemies (full term baby stories are welcome as well). If any of you out there know of parents that are going through similar events like we are, feel free to point them to the site. While we don’t have any answers or resolutions to any of this, we’ve found it helpful when other people have shared their experiences with us – if we can do the same, we’d be happy to. We’re going to keep the Zoe Updates going for now, but when she finally comes home (fingers and toes tightly crossed), we’ll be discontinuing the emails. We will, however, use www.zoebeth.com and the forum to continue sharing stories and pictures about Zoe. [Please note that if you’d like to register for the message board, it will send you an email asking you to verify your email address – be sure and check your spam folders if you register; those emails tend to get caught by those.]
Also a special thanks to everyone who’s gone and visited Allie’s website (www.scotthousehold.com). She’s the little girl we shared with you last time who has leukemia at 4 months old. She’s just finished her first round of chemo, and seems to be doing well. Allie’s parents are doing a good job of keeping everyone updated through her website.
Hope everyone’s doing well.
