Day 7 - update

Another long day. I remarked to Sheila yesterday as we entered the hospital that if feels like we are going to work. Each day is the same. We arrive early in the am. Around 9 am, the staff does their rounds and come by to discuss Erin. There is the attending, the resident, the intern, a nutritionist, and a pharmacist. They discuss Erin's situation with a lot of numbers and technical data. Parents are invited to listen, and then question the staff upon completion of their report. I can't say enough about the incredible people who work at this hospital. They are on a mission, and they understand the dynamic between worried parents and their sick children. They are uniformly supportive of the parents, in some ways nursing parent as well as child. For example, no matter how we are set up around Erin's bed, they unfailingly tell us that we are not in the way and that their job is to work around us.

After rounds, we spend the morning with Erin. It passes so quickly. This morning, I started the morning at 8:30 holding Erin. At some point, Sheila went to the "pump" room. After she returned, I asked her if it was 10 am yet. It was actually 11 am. I had no idea where the time went. Holding Erin in my arms is like suspended animation. Time flies and you have no concept of it.

Back to the schedule....lunch comes around noon, but sometimes later. Today, it wasn't until 2:15, as Erin had another bout of her fever spikes, as previously described in the last post. Once she finally settled down and went to sleep, we left to where else, John Barleycorn. Can I mention again how bad the service is at Barleycorn? It sucks. Actually, that may be generous. But I digress.

Once lunch is completed, we return for the afternoon shift. Today was very peaceful until about 5:45, when Erin's fever spikes returned. Damn, I hate to see her go through those spikes. It is agonizing. I was holding her the entire time. She shakes like a leaf when they hit. It sucks. Another use of the technical term "sucks." I find these days that "sucks" is a technical term that can broadly describe a lot of what Erin has to endure.

At 6:30, my buddy Peter and wife lovely wife Patti showed up to see Erin, and to take us to dinner (guess where...?). Erin wasn't performing very well, as she was alternatively burying her head in my arm or shaking and crying due to a spike. Returning to our detailed schedule analysis, we are tossed out of the room at 7 every night as they do a shift change. The nurses want to be able to openly discuss your baby's case without the parents listening in. Erin wasn't quite calm yet, and we hated to leave her in that state.

We had a very nice dinner (yes, the Barleycorn service sucked...have I mentioned that yet?) with Peter and Patti. It was very nice and generous of them. It was also great for Erin to have yet another visitor. Sheila's sister Maureen had come by late morning to see Erin again and to go to lunch with us. Lucky for Mo, Erin was on her best behavior, alert and happy after her fever bout.

After dinner and the usual negotiation with Sheila over her need to rest, I returned to the NICU to spend some more time with Erin. Sheila had a very nice walk home with Peter and Patti. I found Erin in a very nice "nest" (nurse Haley's term), sucking happily on Mr. Binky. I grabbed her and a comfortable chair (relative term...it is a publicly funded hospital, after all) and snuggled her up to me. She was wide awake, and very serene. Haley said that she could tell upon taking charge of Erin that she had a tough day, and was feeling blah (and yet another technical term). Erin didn't want Binky...she just wanted to be held while looking at me and listening to me prattle on about pretty much nothing. It is amazing how a reasonably intelligent (editor's note...my description) man can lapse into incessant endless baby talk. I really enjoyed our time together. At some point, she fell asleep and even slept through the complicated transfer from my arms to her little "nest." I left at 10. Pretty much a typical schedule.

I am sitting here writing this post, drinking a glass of great Shiraz (sorry Alex, you missed out on this one). Before writing, I tend to review past posts to make sure I am not duplicating previous posts too badly. I always look at the photos, and it makes me realize how surreal it is that a) I have a daughter, and b) that she isn't home with us. Okay, c) that she is the most beautiful thing I have ever laid eyes on. It is so very difficult not being able to have her home with us, and to have to leave her every night. I think about the suffering she is enduring, and wish that I could end it for her. But like the rest of life, there is no magic elixir that fixes problems. This isn't a dream that we will wake up from, much as we desperately wish it to be. Life is life...happiness, joy, sorrow, and complication. In spite of the complications of the last week, and the issues Erin is dealing with, I can still find some good to take away from this situation. I have learned so much, and grown so much. Things that I couldn't possibly understand a week ago now make perfect sense to me. I definitely have a different outlook on life. I hope I am a better person. I hope I am a better husband. And I hope I can be the father that Erin deserves.