So, more news...
The umbilical line (UAC) is out. It had slowly started coming out over the last day or so, and when they checked it today, it was precariously close to coming out on its own. (He's so greasy, it had just slowly worked its way out). Anyway, had it come out unexpectedly, he would have bled out of that artery a lot, so of course, they felt it better to go ahead and get it out. I'm SO glad it's out of there.
However (yes, my friends, there's always a however), this meant that he was getting no additional nourishment of any kind besides what he is nippling (which is still inconsistent). So... the feeding tube is back in, but secured a little more tightly with a really soft, thin tubing tied around his head. The hospital is in the process of ordering Mepitac (thanks for the suggestions) to secure it better, and thanks in advance for sending us some if you are. I know a lot of you have offered to send samples, and I greatly appreciate any EB product that might be beneficial to Jonah... at least til I figure out WHAT in the world I'm doing. I'm also going to have lots of questions about at home care once the time comes. And the time WILL come.
Jonah just finished eating 25 cc's and ate 20 at an earlier feeding. I think we may try the Dr. Brown's bottles, but we're also using a squeeze type bottle now (that plastics brought up for us to try), so he doesn't have to suck so hard. He knows how, but after he drinks the first 10 or so cc's, he seems to kind of give up - it could be because it hurts his mouth.
I feel pretty good about today overall, and I can't tell you how great it is to have my Matt back.
Okay, I have a request. And I hope you take it in love, because that is how I mean it. Please do not call me at the NICU if you are not family or personal friends. I have so much going on, am stressed out most of the time, and any time I have to spend on the phone is time away from Jonah. Plus, it makes the nurses have to be my PR reps, and I just feel really bad about that.
Also, if you have an issue with the way the doctors are choosing to treat Jonah, please leave a comment here, and do not call them (or me) at the hospital. There are MANY other babies here at the NICU besides Jonah, and I want the doctors to spend their time treating their patients, not having to deal with the repercussions of my blog. I mention them by name here in order to thank them for how awesome they are and so that you can pray for them by name. I just don't want them having to field extra phone calls and messages because of this. Do not get me wrong, they have not complained, but I feel responsible and guilty when I'm causing them extra time and effort - believe me, Jonah takes PLENTY of their time as it is. I appreciate SO much your willingness to help and be an advocate for Jonah. We need all the help we can get. I can't believe how much you guys care for and love him. It blows my mind everyday. But, please, leave a suggestion here, and I'll be sure to pass it along. My sister-in-law, Amy, is going through all the EB comments and compiling all of the EB medical suggestions and resources into one document. I read all your comments, and we are taking them to heart. Everything that I've taken to the doctors from you has been considered. They are in touch with Dr. Fine at Vanderbilt as well as the DebRA folks, and I trust them. Some suggestions don't fit Jonah's case. Others are a perfect solution. Jonah is in great hands.
Please know how much Matt and I love and appreciate you. You have been amazing in your love, prayers, and encouragement. I could not do it without you. Thank you EB peeps for helping me. I'm so honored to be part of such a caring and accepting community. PLEASE, PLEASE keep giving me your suggestions and sharing your knowledge. It's been so GREAT. I know how much I need you now and how much I'll need you in the future. You guys are awesome. I hope you know I want to hear from you... but it's just too much on my shoulders to get phone calls during the day - when I'm by myself - with such heavy and confusing information. Emotionally, I just can't handle it. I hope all that makes sense.
Thanks so much for your love and continued prayers.