Life as a Leach

It's been a while since I've done a Q & A, and I was asked a question the other day on Facebook.  I figured I would answer it on here and offer for anyone else to leave a comment on here or FB, or email me, or ask me in person, or whatever, if you have a question...about anything, not just Abby!  The worst I'll do is not answer it.  :) Send them in the next few days and I'll try to have the answers up by Saturday.  Happy asking! Question:   I am curious as to know if Abby ever pulls at her tubes or the vent. I am amazed that as curious as babies are that she does not do this... So, far, the vent tubing hasn't been too much of a problem (insert knocking sound here).  The tubes are pretty thick and strong, so it will take a while for her to actually pull them out.  Plus, the part where the circuit (tube) is connected to the trach is tied on around her neck.  This is the white string that Abby just loves to untie and chew on!  R...

I've had a few more questions asked the last few days, so I figured I would just answer them on here for all to see.  Feel free to send any others my way.  :) Is Abby's trach permanent?  No, not right now.  We don't know if it will end up being permanent down the road, but right now it is temporary...as in long-term temporary.  We expect Abby to still have a trach when she enters school.  How long she has it really depends on how much her jaw and airway grow.  I got my best look at her airway the other night when she was wailing in the ER, and it is very small...about half an inch in diameter if I had to guess.  So it's got an awful lot of growing to do before she can depend on it for breathing. Abby doesn't have any of the deformities that you see in pictures of babies with this syndrome (or Pierre Robin Sequence, which is her secondary diagnosis).  She looks like a perfect little baby!  Are these traits more likely to come ...

Q & A: The Medical Edition! You guys had some awesome questions! I answered every one of them, but it's too long to put into one post. I have them all answered in a Word document and will cut and paste them into several different posts over the next few days. Plus, this way I can string you along as you eagerly await the next post! :) This first one is all about Abby's medical care. If you have other questions after reading these, send them my way and I'll try my best to answer them! Have you had genetic testing? Yes! We’ve had lots! I had an amnio done while I was in the hospital during one of my reductions (might as well put all that fluid to good use!). It came back fine. They tested Abby’s blood shortly after birth for the same things and it was also clear. They have sent more blood to a special lab in Atlanta that does extensive testing. This test will show the presence of CCMS and other very rare syndromes. When we get results back from that, they wil...

Abby will be getting her g-tube placed tomorrow "mid-morning" hospital time (translation: around 3:00 p.m.!) She does not have to have the nissin, a more extensive procedure done to prevent reflux, so the surgery and recovery should be fairly simple. Of course, any kind of surgery makes me anxious and I'm going to be alone during this one, so please pray for us tomorrow! She will be without feeds for a day or two, which will probably mean a little weight loss. Hopefully, we'll be able to get it back quickly (they increased her calories again) and finally reach that magical 5 pound mark! Also, please pray for us as Thanksgiving approaches. I seriously had no idea how close it was and was hit hard with the reality that we will be spending the holidays away from home. While we are incredibly thankful for the Ronald McDonald House, we would much rather be home with our entire family of four. However, we're trying to focus on everything for which we ca...