Finn-ster (nicknamed by his surgeon).... on The Up & Up!!

The last 24 hours have definitely been an emotional rollercoaster for us, but the nurses in the cardiovascular ICU have tremedously helped calm our nerves.  Finley is continuing to be a strong, rockstar!  He has made lots of progress over the last 24 hours.  After an exhausting morning and afternoon yesterday, around 2pm we were brought in to see Finley.  It was a definite shock but was something that many of the medical staff had prepared us for. There were so many monitors, pumps, drips, bags of fluid and wires....his little body seemed to get lost in it all.

The nurse assigned to us was thebomb.com!  She went over every little thing when we came back to see Finn, described all medications, all IV line sites (he had 4) and went over the procedure for us again.  She had told us "goal" numbers that we were hoping to acheive on the monitors.  As we sat....and watched... and listened.... every beep and ding made me look at the monitor numbers and ask the nurse "Why is it dropping?" "Is he ok?" "Is this normal?" "Is he comfortable?"  As Mark likes to say, I was trying to be the doctor and driving myseld MAD!  Mark had suggested that we head home around 7PM and of course mamabear resisted until around 8pm.  As I was falling asleep in the chair, I finally agreed and boy did that bed feel good!
I got up to pump around 2AM and called the RN for an update and she had said that all was well.  Finn had an okay night, he does not like to be turned or fussed with (it makes his stats drop unfavorably).  They did a chect X-Ray to check on the placement of the endotrachial tube (which is what is helping him breathe while sedated) into the lungs as well as the placement of the chest tubes that are draining blood and fluid from the surgical site.  Everything had good placement on the scans and his lungs appeared to be fully expanded without any fluid (amazing!).
Mark and I arrived back to the hospital this AM just on time for team rounding, which was awesome to hear from all the specialites involved with Finn's case (Cardiology, ICU Doc, ICU Nurse practitioner, Respiratory, Lab, Pharmacy and the nurse on for the shift).  It was awesome to hear all the medical jargon, it made me feel like I was back in my dietetic internship!  The goals for today were to wean Finley's ventilator and get him extubated (pull out the breathing tube).  The Doc and Cardiologist were VERY pleased with Finley's lab values, respiratory status and heart sounds.  There is a very small pin hole opening where the surgeons stitched up the hole between the chambers which could result in a murmur (very common), but all staff reported that they where not able to identify any murmur or other abnormal sounds when listening with a stethoscope.  Great news!!!
After rounds, Mark and I went home to reload our clothes and to of course see and spend some time with Olivia.  She was SOOOOOOO excited to see us and was just the sweetest thing ever!  Olivia has recently gotten into building things with legos, so Mark sent Olivia a package from "Finny" (as Olivia calls him) of a starter lego kit and she was so excited that Finny got those for her.  She was excited to build with her daddy!

After getting re-energized by the sweetness of our almost 3 year old and our sweet (neglected :( ) pup, we headed back to Charlotte for another 4 day stay.  When we arrived to the hospital we were greeted by a baby boy that looked a little more like our son, his breathing tube was out!!  He has a very swollen face from all of the fluids, but that should go away in a day or two.

He now has oxygen pumping though his nose, but he is maintaining his stats great!  Multiple other meds have been stopped and he is mainly receiving pain meds to stay comfortable.  The next hurdle is feeds.  They are going to restart his IV nutrition this evening (TPN and Lipids) and when the 830pm rounds happen tonight, we will be asking about placing a tube into his tummy to start dripping some milk to start up his gut juices!  Usually the biggest hurdle of sending heart babies home is the feeding after surgery.  We are so very lucky that we were able to bottle feed Finn prior to surgery for almost a full week.  That truely was HUGE and put him WAY ahead.  We are hoping that he will recall that suck swallow motion and then possibly be able to start with bottle feeds shortly.  It is hard work getting milk out of a bottle and much harder to breast feed, but we will get there eventually.  We always say, slow and steady wins the race.
Lastly, THANK YOU so much for all of the uplifting messages, texts, visits, prayers and SUPPORT. I do not think that we would be able to hold it together without having a major nervous breakdown without all of YOU!  As we continue down this journey, please help us by keeping us in your positive thoughts and prayers!  God has shown us that he is so so GOOD.  Finn's strength is a true testament of that!
Signing off for now! xoxox
Dana