Living a Life of Isolation

Ayden was born seven weeks ago today. I have to reread that in order to really believe it. That means he's been in the hospital for seven weeks now, also. Essentially, so have Allison and I. Although after these seven weeks both of us have now slept at home on several occasions, the majority of our time over this period has been spent at the hospital. This is especially true for Allison, since she spends the weekdays there while I am working (I take over on the weekends so she can go home). Since we moved out of the Ronald McDonald House what seems like forever ago, the two of us have slept in the same room (Ayden's hospital room) exactly once. Every other night, one of us sleeps at home while the other "sleeps" at the hospital. We basically see each other for a couple of hours each day, at most, and under very abnormal circumstances.

This existence is incredibly isolating. Not only are we typically at the hospital by ourselves, even when we are at home, we are alone. It goes without saying this is far from ideal, on many levels. Each day this arrangement continues is harder and more frustrating (undoubtedly, Ayden's nurses and doctors would attest to the latter). We just want to bring our little guy home, to feel like a husband and a wife again, to be a family.

Even when we bring Ayden home, we will be isolated. Not from each other, but from the rest of the world. Because his body would be overly taxed if it had to fight off some kind of illness, we will not be able to take him to public places, to visit friends or family, or possibly to even allow anyone to visit us. We will essentially be living as hermits until after his second surgery. Again, far from ideal.

How we will be able to continue in this manner - living an isolated life - I do not know. If not for the grace of God, we wouldn't have made it this far. Therein lies the answer, I suppose. I'm just ready for this part of the process to be over. I'm ready to be done with the hospital for a while. I'm ready to be home with my wife and son. Contrary to what Allison has said in being too harsh on herself, I don't believe this - wanting some semblance of a normal life - to be a selfish desire. I'm ready for it. Allison is ready for it. I just want Ayden to be ready for it, too.

***

Friday evening was a needed reminder that Ayden still needs to be at the hospital. He continues to dutifully carry out the most recent task I have given him: to let us know whether or not he is ready to go home, to not allow the doctors to send him there until it's the right time. Before each pacing study, I have told him to let us know if it's time. Each time, I have told him it's okay if he's not ready to go home yet. He has done his job, and I am grateful for it. I don't even want to think of the consequences if we had been home Friday night when he had the SVT. His reaction when he has one doesn't appear to be to scream or cry, so there's no telling how long it would have been before we'd have realized it was happening. Because he was still at the hospital and hooked up to the monitors, we knew right away.

SVTs aside, Ayden continues to make his father very proud. He has been such a trooper through all of this. He just bounces right back from whatever pops up. He's come out no worse for the wear after each pacing study. He was taking a full bottle within 10 minutes of having an SVT Friday night. He continues to buck the odds by taking all of his food and medication by mouth (his pediatric cardiologist says Ayden would be only the second of her patients in her career to go home without a feeding tube). As of tonight, he's eaten his way up to a weight of 8.5lbs (not even two weeks ago, he still weighed less than 7lbs). He grunts (grunting seems to be his response to just about every situation), he makes his faces, he sticks his tongue out, he smiles (Allison claims he laughs now, but I haven't heard it). He's just simply unfazed by it all. The doctors continue to be impressed with his recovery. It seems like the all of the nurses in the building know who he is, even if they haven't seen him, and when they do see him, they all dote over him (at some point, we will have to post a list of quotes from his various doctors and nurses).

God has truly blessed us with an amazing little man. I have seen all of the ultrasounds, all of the ECHOs, all of the EKGs. I know what all of the doctors have said. I know the reason behind the surgeries he's had or will have. I know all of that.

Yet, somehow, Ayden has more heart than most adults. And I couldn't be prouder.