A month down the road

It has been a month now since Eleanor was born. To be honest it is a great little milestone for us to have Ellie hanging in there after a month. Nobody ever told us that she was doing anything but fine, but at times we couldn’t help the scary thoughts from going through our heads. We both have wondered to our selves and to each other if she would make it this far. If yesterday’s show was any indication, we were just silly to wonder that.

I told some folks in the first weeks that Abby and I had matured more in the first few weeks than we had in the past five years. Well we are old, grizzled veterans now.

We have also had a condensed, Cliff Notes education and have learned more than we possibly could about things we never knew exisited.

20 or so things that we have learned:

The human small intestinal tract is like a sea star. It will grow back if given enough time to take on the function it should have.

Anastomosis, atresia, volvulus, and parenteral nutrition is not just fancy words for surgeons. I have used each of them in a coherent sentence in the past two days.

Baby girls are cute even with tubes sticking out of their noses, arms, legs, and stomach.

Friends are good to have. we have heard from friends that we had not been in contact with for years and it is great to know that so many people care about us.

Family is great to have. Our families have been amazing supporting us in the last few weeks. Even though nobody quite knows what to do to help, we are getting every bit of support that we need and that makes this crappy situation better.

Chocolate chip cookies make a good breakfast, lunch, or dinner.

Lots of people have bad stuff happen to them. Feeling singled out and alone in this journey was the toughest part in the first few days. Meeting other parents with kids who are sick made the first week a lot better for us.

There are some really super smart people out there who know a lot of stuff about really complex things. A lot of them work at Yale and Children’s. We chose up sides and they are on our team.

Some people’s idea of a ‘job’ is different than what I think of a job. Apparently some people think that opening up six pound babies is like making pizza or shoveling shit.

Nurses are your best friend in the hospital and are really good at what they do. Get this into your head and you will go far and sleep well at night while they watch your baby.

Murse is what nurses call male nurses. They are rare in the NICU, but you do catch a sighting every once in a while. Sort of like a limpkin.

Normal is relative. Going home to see the earlier version of normal sucks.

Distance screws up your perspective on a situation. Come and visit the kid. You will feel a lot better about how she is doing. I promise.

Lots of people love us. It makes us cry to think about the people who are thinking about us and Eleanor but we have learned this fact. We love you too.

Apparently my strain of bullshit extends to written things as well as tall tales.

Front to back. Key words when you have to play with the other team's equipment.

You can live on pastries and coffee and still lose weight. Cheap cheeseburgers? Not so much.

If you are tired enough you can sleep anywhere, usually in a room full of visitors.

It is .7 miles from Boston Children’s Hospital to Fenway Park but going to games isn’t as much fun when you have to check your voicemail 11 times for messages from the hospital.

The Boston Globe kicks the Herald’s ass. I don’t care what Adam says. But they are both better than the New Haven Register.

There are lots of things that could be wrong with Ellie that are a lot worse than her gut problem. Talking to parents of kids who will never walk, talk, or breathe on their own has taught us this.

If you wear your Children’s Hospital Parent ID out of the hospital, you stand a good chance of making the cashier at Best Buy cry on the spot.

Telling a hospital receptionist that you are at the hospital to meet your daughter who has been transferred by ambulance is a set of words you may have trouble getting out of your mouth.

Following you daughter’s ambulance up the highway is not fun.

Blogs are great therapy.