Progress

Today was a long day...I stayed at home last night because Stella needed one of us...it was hard to leave Megan and Hunter. I did my customary get in my car close the door and lose it as I have since we got to Emanuel. I will say though that it is getting "easier " to leave the hospital...it was so refreshing to be with Stella, she makes it all go away temporarily.

This morning we sat and waited for the OB, the nurses and the crew to discharge Megan, it was bitter sweet to leave a day early but depressing to know that we are leaving a major piece of us behind. Hunter had a few visitors, Grandpa and Nona and Kris and baby Anna (although Anna had to stay back with me, we don't want her to see her future prom date with tubes intact). Megan's milk has come in so that will be a relief for her to be able to provide Hunter the ultimate nutrients for his comeback.

Of course we went to see Hunter every so often, his nurses have been amazing in updating us along the way. They say that he is doing really well and that his vitals are strong and that he is peeing allot...which is great. His position hasn't changed as his chest is still open so he is on the paralytics and heavy sedation, but he looks so peaceful. As Toby said in a text, "he is laying there plotting his attack on Stelly". We met with Megan's OB today and got all of her prescriptions for her recovery as we are leaving a day early to get home to Stella.

When we were finally discharged we went up to say "good bye" to Hunter...not really, as we know we won't be able to stay away long...it was hard to say the least. As we got in the car and drove off it was emotional, Megan's motherly instincts were tugging on her as she left the child behind that she hasn't been without since conception...she remained strong but it was hard, words can't console at that point.

We had a few things to look forward to when we got home, Tyler flew in from San Francisco and Lindsay was getting in later. When we got home we unpacked and the whole Harnish family (Kristi, Jon, Tyler, Ashley and I) drove back to see Hunter. It was good to introduce Hunter to Tyler and for the rest of the family to see him at his "worst", that way progress will be even that much more respected.

As I was leaving the 'lil man I was stopped by Hunter's nurse, she told me that they were going to close Hunter's chest tomorrow! That is huge news. They had planned to do it on Saturday so the fact that they are moving it up a day is a "win" and shows that he is progressing. It's a big procedure, the entire team of surgeons from his initial surgery come up to his room in the PICU and seal off the room and close him up. They have to "sew" his breast bone together with stainless steel wire and then staple his skin together...we saw this a few months ago with Megan's dad when he had quintuple bypass surgery and it was less scary than it sounds. Actually scratch that, it is crazy that they do that. This is scheduled for 10:30AM tomorrow. The closing of his chest is another hurdle that we are excited to get over. Once they do this than every day that passes we progress; off of paralytics, slowly off of sedation, removal of the breathing tube, the feeding tube etc...every day brings new hope of getting our baby back. His schedule is entirely up to Hunter. He dictates each step and the next after that...we are excited to see him progress.

A good friend, Joel Durbin, who has plenty of NICU experience sent me an email that told me that when you have a child who is in need like Hunter is, every step, from breathing to weight gain to smiling to crawling is enormous and so rewarding. He was right, it's incredible the reward we feel with each phone call of progress. I can't wait to see him so much as blink!

We know that we have a long road ahead of us, countless trips to the PICU, potential feeding issues, all of the other potential or inherent complications to major surgery on an infant, regular visits to the cardiologist for most of Hunters life but this is what we were dealt and when you get pregnant you don't know what you signing up for. I can't help but think back after all we have been through since that fateful 20 week appointment when we first learned of Hunters heart defect. We were faced with questions and decisions that know one wants or ever thinks they will have to face in reality. But I can't help asking myself, "would you change it if you could?" The answer is "no". Of course, like everyone else, I want a normal life and healthy family. But I can not express how this experience has changed not only my outlook on life, medicine and the importance of family, friends and health. But this experience has forever shaped my relationship with my wife, myself, Stella, Hunter, my family, my faith and humanity. There is no way that I can share with anyone how powerful this has been for me and Megan. Of course we'd pay big money to be sleep deprived and crazy for our son at home right now. But we're not and our reality is forever changed, for the better. We cherish every breath our child and children take. We hang on every beat of his heart. This is one of those experiences that one never wishes to have but everyone one can learn from...We are so in love with our son and daughter and we forever will be thankful for their being, the friends and family who surround us, the doctors and nurses who clock in 24 hours a day and for strangers who watch over our child's life because it's their "job"...angels do exist, you just don't have to search so hard for them.