~103~ Coming Home!

I'm coming home, 

I'm coming home, 

Tell the world I'm coming home!

We are very happy to say that Ethan is home!  We were officially discharged on Tuesday, after 17 days in the NICU.  We had originally hoped to take Ethan home over the weekend, but a little "episode" set us back a few days just to make sure that he was 100% healthy and ready.  It was disappointing for sure to have to spend those extra days at the hospital, but we adjusted and managed none-the-less.  Although it feels like eternity now, another NICU parent wisely pointed out that in the grand scheme of Ethan's life, the days that he spends at the NICU whether it's 10 days or 100 days, are just a blip on the radar and in a few years will just be a distant memory.  Hearing that really helped put things into perspective. 

Leading up to discharge day, Ethan was subject to a whole host of tests: Congenital heart defect test, hearing test, and a car seat test-in which he had to maintain his vitals for at least 90 minutes while sitting in his carseat.  He passed all of them with flying colors!  We also made sure to take some pictures with our favorite nurses.  During our time here, we had many, many nurses work with Ethan.  Over the weekends though, we were fortunate to have the same nurses during the day and evening that really got to know Ethan and us.  It was comforting during those days to know who would be in and out of our room and to have someone that we had developed a relationship with, versus a random nurse that we only saw for 1 twelve hour shift, if that.

           Our day nurse, Tiffany             &        our night nurse, Christina

On Tuesday, after packing up our room and signing discharge paperwork, we strapped Ethan into his carseat and finally took him outside for the first time.

Once we got home, I went inside to greet the dogs and say hi.  Then Jake took his turn doing the same.  Even though we've both seen the dogs since Ethan was born, we still wanted to make sure that we said hi to them and gave them full-on attention before bringing Ethan in.  Both dogs were very curious and seemingly excited about Ethan, Viktor more so than Buckles.  Jake and I were very pleased with their response to our newest family member and looked forward to adjusting to life at home as a family of 5 :)

~102~ Being a NICU parent

We have now been in the NICU with Ethan for 11 days.  

In some ways, it feels like we've been here forever.  In other ways it's hard to believe that Ethan is already a week and a half old.   This journey has been incredible and amazing, and tougher than I could have ever imagined.  Each day we are humbled by Ethan's seemingly small victories.  We've cheered over poopy diapers, a 10 gram weight increase (that's 1/3 of an ounce), and eating an extra 5ml of milk.  We've celebrated things that other parents of newborns have probably taken for granted.  

Then there are the bigger victories that have shown us just how strong Ethan already is:
-Coming off antibiotics
-Weaning off and completely stopping IV fluids in a day
-Discontinuing phototherapy for jaundice not once, but twice.
-Increasing feedings from 30ml to 35ml, to 40ml, and now to 44ml.
-Moving from the isolette to an open air crib

Over the past week, we've found a pretty good groove and routine.  Ethan eats every 3 hours.  Between diaper changes, temperature readings, eating, and pumping, this process takes about an hour.  This leaves almost 2 hours in-between feedings to eat and sleep.  For the first week, I seemed to be managing on very little sleep pretty well.  However, that has all caught up to me now.  I long to have even just 4 hours of continuous sleep.  And this is coming from the girl who could sleep for 10-12 hours without breaking a sweat.

At Mercy, we're very fortunate to have the option of rooming-in with Ethan so that we don't have to leave him in the hospital at night.  Unfortunately, the bed, or rather couch is only big enough for one of us.  Since being discharged, I have been staying at the hospital with Ethan.  As the days have started to turn into weeks, being at the hospital all of the time gets very monotonous and draining.  I can't tell you how many times I've lost track of the day or hour.  Having visitors and talking on the phone with friends and family has helped a lot.  I've also taken time every few days to leave the hospital to go home and take a shower, see the dogs, and get some fresh air.  Oddly enough, when I go home right now, it doesn't quite feel like home.  It feels like I'm visiting someone else's home who just happens to have all of my stuff there.  I can't wait to be able to go home and be able to sleep in own bed! Jake is here as much as he can be and is doing an incredible job of balancing hospital time, work, and taking care of the house/dogs.  He is an amazing father and each time I see him interacting with Ethan, my heart melts and I fall even more in love.

The hardest part of being a NICU parent is the unknown. We never know what the next hour or day will bring.  Each blood draw, glucose check, or weigh-in has us waiting with bated breath to see if Ethan has made the progress we hope he has.  We long to bring our little man home and find a new sense of "normal".  At this point, we have no definitive timeline for when Ethan will get discharged.  All we know is that he has to gain weight and he has to eat well, without the help of a feeding tube-things that are completely out of our control; something that we're beginning to learn as new parents.  Ethan is his own little person and only he himself will determine when we get to go home.  Not us, not his doctors, not the nurses.  Ethan.  The one thing that I keep reminding myself is that as difficult as this has been and will continue to be, we are so incredibly lucky.  Ethan is not a sick baby, he's just small and early-which means he hasn't had the same amount of time that full-term babies have had to build up his fat and develop skills like eating.  Nothing that we're waiting on with him is a matter of if, but just when.  He will get there.  He will come home.  We just need to be patient...

Despite the challenges, anxiety, and uncertainty that being a NICU parent brings, at the end of the day, we're really just parents.  Parents to a beautiful, sweet, funny boy.
It is already the best title and job Jake and I could ever have.