Post Surgery Day 12

After 12 days I was finally able to hold Ellie today.  I know they generally don't like parents told hold their babies while they are intubated but the nurse got the go ahead and figured that was what Ellie was wanting all day today as she has been a little fussier than normal.  She was surprised that she hadn't been held in such a long time.  They placed her in my arms and she had a nice restful sleep for a few minutes until we had to put her back in her crib to transport her for her surgery.

Ellie went back to surgery to drain the fluid behind her heart and have her pacemaker placed.  We kissed her goodbye in the hall before they wheeled her in the surgical room.  Nothing is like giving her away to have open heart surgery but it still wasn't easy.  For this surgery they had to open her wound all the way up again and undo all the wires.  It was nice that she was able to have her pacemaker done at the same time in order to avoid another surgery in the future.  If they had to open the site up in a few months or years it would be more difficult due to the scar tissue.

The surgery took about 3 hours from beginning to end and everything went well.  Ellie is now our bionic baby with 2 leads in her atrium and 2 leads in her ventricle.  Each of them lead to a single lead which plugs into the generator which was placed in the lower left side of her abdomen.  There was alot of consulting with different people because Ellie also has a malrotation in her small intestine which she will have to get surgically corrected sometime in the future (yes, poor baby, this is not the end).  The other surgeons thought it would be okay to place the generator in the left side and not disrupt the area that they will be working in.  They don't think that Ellie's heart will have to be paced all of the time, in fact, she could have gone home without a pacemaker but I think it was inevitable that she was going to get one.  It would just be a matter of when, not if.  The surgeon was able to drain quite a lot of fluid off of her heart and put a small hole in the back part of her pericardium to allow more fluid to drain through the chest tubes.  We haven't seen her yet but she has 2 more chest tubes in place to help with the drainage.  He was also able to drain a lot of fluid out of her abdomen so hopefully that will help with the healing process and make her more comfortable also.  This surgery might have set her back a day or two but overall it should help her to recover easier.

There is still no telling when Ellie will finally make it out of the hospital.  I don't think her being here for a month is unlikely but it all depends on her.  Hopefully the next thing to come out will be her breathing tube and then we will be able to hear her cry and hopefully sing again.  After that it will be a matter of seeing the fluid in her drainage tubes decrease, increasing her feedings, and weaning more medications.  It still seems like she has such a long way to go but we are so grateful for the progress that she has made so far.  She is such a fighter.