Thursday, October 15, 2009

Day 1 - Plus Starting the Next Phase

Karsie slept through her first night home.  Kevin and Michelle did not.  So far Karsie is handling the transition perfectly.  She is not spitting up hardly at all.  She had two wet burps (both after her Reglan).  We also had a nurse come by and bring some feeding supplies yesterday.  She stayed for a couple hours and helped with the pump that was delivered (that we ended up having to trade anyway).  

Something to note:  Karsie LOVES ceiling fans.  She sits and stares at them for long periods of time.  This afternoon she started to talk to it.  It was quite funny.

Karsie's Future:  We're not sure if we ever explained the plan after discharge since that seemed like such a huge hurdle, but now that we're here, we'll continue... At this point our next step is to continue growing and feeding.  There's not a lot that will happen medically other than making sure she gains weight.  We will continually make follow up appointments with our doctors to see if she is on the right track.  In about 4 months we will see our plastic surgeon and have an evaluation to see how Karsie is doing and we will probably set up an approximate date for putting in her tissue expanders.  Our last big hurdles come in about a year (we think). This is the tissue expanders followed by the closure surgery.  The plastic surgeon will put in the expanders and stretch out Karsie's muscles and skin so when Dr. Saenz puts in the organs the muscles and skin can stretch around them and they can close her.  After that, she's done other than follow up appointments and healing.  But for now, we just keep her growing.  

On to day 2... 


  1. I'm amazed Karsie slept through the night. I'm not amazed you did not. Ceiling fans are great. You may have come up with a new marketing point. Grandma T.

  2. Hi there! It is Sarah from St. Louis. Just wanted to say congratulations on little Karsie coming home. I haven't read the blog in a couple of weeks and am so happy for all of you. Our little O baby, Benjamin Joseph, was born on September 16 (hence while I haven't had a lot of time on the computer). He is our little miracle as we were able to have the closure surgery the same day he was born and he got to come home a week later. So much for what those doctors told us . . . He is still having some gas/reflux issues, but other than that he is doing wonderful (although certainly not sleeping anywhere through the night). I am excited to continue to follow your daughter now that she is home!! Congrats again on your little miracle. The power of prayer and good doctors is unbelievable