Monday, October 26, 2009

Bayta battles another tube and wins! (DAY 8)

Today after we got back from a meeting to learn that we should never shake a baby (even if they deserve it or ask for it... sorry Jackson) We also learned smoking is bad and and babies should sleep on their backs. I wish I would have known all this when I was a prosecutor it would have made things easier for me. I have half a mind to write a letter to my old boss and set her straight. ;)

Well, we got back from that meeting and Bayta got her IV out. Still no word on the chest drain tube. We are waiting on a surgeon to perform the removal which is a pretty simple one. She has been completely dropped from pain meds, but she will have to get a dose of something when they remove that tube... to me it would have been nice to remove it before she got off the meds... but surgeons are busy people and sometimes things happen to keep them from doing simple procedures like this.

So for now there are no tubes in her mouth or wrists or feet. She still has her multiple lines coming out of her groin. She also will have to get the smaller feeding tube put back in her mouth if she does not take to breastfeeding right away. Her feeds will start with 5 ml and then be upped by 5 ml each day or so until she is taking 2 + ounces without significant reflux. She seems to still have the suck relex going... but she was not really getting too involved with the breast before the second surgery... so we will have to see how it goes.

Amanda continues to do very well, despite the soreness at her incision. It really isnt funny but when she laughs it hurts her so she laughs winces... and then realizes how silly it looks and does it again... sometimes for minutes at a time. One thing is for sure she is as beautiful as ever.

We are hoping to get the boys up here this weekend. We miss them so much it hurts.

We also want to continue thanking you for your thoughts and prayers it is nice to hear from all of you... even if we are unable to respond to all emails we read everyone and get a lot of comfort from them. In particular I wanted to think my GREAT AUNT ELIZABETH for taking the time to read and write to our blog. Very impressive.

Also a question was sent to us to define what a VSD is. I believe it was defined earlier in the blog, but it is a Ventricular Septal Defect. It means that a small hole existed in the heart. Many "normal" babies have these holes and they are never detected. Because of Bayta's condition we have so many ultrasounds of her little heart that we found a very very small one. It appears to already be healed (the last ultrasound does not show it.)

A VSD is one of the 5 prerequisites for a diagnosis of pentology of Cantrell.

Special thanks to Allison Nugent for opening up the National Institute of Health's databases to us for awesome medical research. The Board of Directors for this blog have voted and she is now our Offical Researcher at

Rumor has it she is not going to quit her day job. It is also interesting to note that Allison went with Amanda and I on one of our first "non dates" during college... and the fact that she still talks to me is greatly appreciated.



  1. Keep those heads up you guys! It was great talking to BOTH of you on the phone today. You both seem to be in good spirits and that is great. You almost have to be! :)

    Big Hugs to you guys!

  2. Amanda, it may help you to have a pillow to hold on your stomach, should Darick let out one of his funny jokes- so you can hold your self and might not hurt too much- I did this when I had gall bladder surgery years ago!!
    I am amazed as little Bayta continues to get better and better, Praise the Lord. and keep them blogs a comin!!!

  3. After I had James, I wore a compression band. I had him naturally, so I just wore it to put everything back in its place a bit faster, but I had several nurses tell me that they are really good for c-sections, because they stabilize the incision so it heals faster.

    I do remember fondly driving around town bartering Silver Dollar City tickets. Didn't I have to ride in the trunk of your hatchback at some point?

    Allison N.

  4. WHAT AN AMAZING DAY FOR BAYTA - YOU GO GIRL!! So so excited to see pictures of her, she is SUCH a beautiful little girl!

  5. Glad Bayta had a good day today! She is definitely a fighter! Amanda or Darick please get me your email address so I can send you the info to sign up for insurance for 2010. Sorry but didn't know how else to get this info to you other than through the blog. You guys are so wonderful for sharing your journey with everyone!