Surgery

Happy Easter!!  Today we celebrate the resurrection of our Savior, Jesus Christ, who died and rose from the grave to save us from our sins and offer eternal life with Him in heaven...what an amazing gift!

We also are celebrating a successful surgery for our daughter Jolene and praising the amazing gift we have been given with her beautiful life.

Jolene's surgery was initially scheduled for 7:30 am, so Jason and I made sure to get to the NICU extra early in order to spend time with her.  The nurses even let us stay with her through shift change...blasphemous!  (They usually ask for everyone to leave at this time in order to transition information from nurse to nurse more smoothly).  7:30 came and went, however, and surgery was pushed back to noon.  The few hours went by more quickly than we could have imagined though, and we had to say goodbye to Jolene and begin the agonizing wait.  Since I was still a patient in the hospital we went back to our room and tried to eat some lunch and caught the end of Back to the Future II and then Dr. Doolittle...totally random movies that were on TV but we were willing to try and veg out with anything to keep our minds somewhat busy!  (I learned that Jason never saw all of the Back to the Future movies though - so that goes on our bucket list of movies to watch someday). :)

For anyone who has ever had their child in surgery, you know how it is...the feeling of not having control over anything.  The actual, physical hurt that is in your heart.  You are waiting and waiting and waiting for what seems like days but is actually only minutes.  We knew that Jolene's fragile little body was in good hands, but we didn't know what the doctors would find once the surgery began.  You hope for the best, but prepare for the worst.

Finally, the phone rang and I must say I had a small heart attack because it scared me so badly.  The nurse told us to come on up to the NICU - they were finishing up surgery and the doctors wanted to talk to us....and everything went really well.  The only thing I really heard was "it went really well."  I'm pretty sure I stretched my stitches trying to get up there as quickly as I could!

Dr. Tsao performed Jolene's surgery, which we were very happy about since he was the surgeon we had met with when she was diagnosed several months ago (who performed the surgery was really up to what day it would need to be performed on and who was on rotation that particular day).  We felt comfortable with his knowledge, skill, and like his pictures he draws for us to explain things. :)  He met with us in one of the conference rooms to reiterate that surgery went about as well as he could have hoped for, and that she was doing just fine.  Music to our ears.  He did say that her defect was quite large...they grade them from A to D, with A being the smallest and only needing some stitches to patch up (with a very high survival rate), and D being the largest where there is really no diaphragm there (and a very low survival rate).  Jolene was graded a "C," meaning she did have some diaphragm muscle to work with, but the hole was pretty darn big.  The survival rate for the C group is around 80-85%.  Still not what any parent likes to hear, but certainly better than other percentages that have been thrown out to us as of late.  The stomach, spleen, liver, and intestines were all moved to their appropriate locations and the Gortex patch was put in to hold it all together.  Moving all of that stuff out of the chest cavity revealed that there is in fact a left lung, but it is pretty small.  A few months ago we learned that kids' lungs actually continue to develop until about age 2 (wow!)...so hopefully that little lung will be able to do some catching up.

So...what now??  Now the ECMO machine will continue to bypass the lungs and let Jolene recover from her surgery.  The medical team will begin to turn it down soon and try to wean Jolene from the ECMO to the regular ventilator, working to expand the lungs.  While all this is happening the other organs that were moved will attempt to get comfortable in their new location and the heart will hopefully shift back toward the center of the chest (it was pushed to the right by all of the out-of-place organs).  It will be a long, slow process and we have been forewarned that there will most likely be a period of the recovery that doesn't go well, just based on the fact that what has been done to Jolene's little body is so drastic.  Totally understandable.  But she's a fighter!

The remainder of yesterday and all day today Jolene did fantastic.  She looked peaceful, her body was relaxed, vitals remained good, and she just looked much better.  Her incision is just below her left rib cage (you can see it in the picture above) and it already looks like it's healing great.  The most exciting part for me was that she was able to come off of sedation just enough to be responsive to our touch, and to try and open her eyes a little bit.  Even though I only saw her little peepers for a few seconds at a time, it gives me so much joy just to know that she knows we are here, knows that we are loving up on her, and that she is fighting and growing and healing.  We can't do much more than hold her little hands and stroke her arms and legs, but being with her is so wonderful.  I was discharged from the hospital today and it was bittersweet...I finally got to go home and see my big babies (who I haven't seen since Tuesday!)...but I left the hospital with empty arms, which leaves an empty space in my heart.  It makes me so sad, but then I remember how lucky I am and that we will bring her home and be able to be together soon.  I am uplifted by my family - by beautiful babies, my strong, deeply loving husband, my family who is here to surround us with love and help us with absolutely everything, and all of our friends, near and far, who have showered us with prayer and love.  We have a long, long way to go but we will take it one step at a time, day by day!