The things we never knew

She’s beautiful. Stunning, really, with those long, curled eyelashes. She has warm chocolate colored hair, with a curl on the ends. Her eyes are always crystal clear and her lips are the perfect shape for a pout or a dazzling smile. She takes our breath away.

Speaking of breath…..

She didn’t take one. Y’know when you push and you push and you push and finally the doctor says “STOP PUSHING!” and you have to hold it there, even though you want to keep pushing until you can’t push any more? And then you are allowed to push again, “but slowly,” and then the baby is there, up on your chest, everyone crying and happy and the baby is pink and crying or pink and quiet or anything but blue and not breathing. Anything but whisked away and suctioned and nurses talking in quiet voices, telling other nurses to call someone else in. Anything but being taken away from the room, with the doctor hurriedly stitching you and telling you “He’ll find out what’s wrong.” Anything but nobody looking you in the eye. Anything but that.

The funny thing is, I knew this wasn’t the worst. We’d already experienced that. The worst is when they let you keep the baby on your chest. Knowing that nothing they can do will make him breathe. The worst is when they tell you that you can keep him for five hours before the mortuary will be coming to pick him up. The worst is when they do look you in the eye – and tell you that they’re sorry but there’s nothing they can do.

It’s the things that they CAN do that we are thankful for. It’s the things they whisked her away and did. How thankful we are for things we never knew.

NICU is a whole different world. A world of gowns, quiet voices and wires. A world where we forget that she is ours and we let others tell us when we can hold her, when we can visit her and what her schedule is. It’s a world where we are told to expect the worst and told that we “don’t know what we are getting into.” We are thankful for every small thing: when they let me hold her for the first time, when we are able to put clothes on her and when she gets moved out of the most critical room into a smaller room. We are thankful when they finally give her a diagnosis: Jarcho-Levin Syndrome. Now we have a name and something to learn about. We don’t know to be thankful that they want to do a tracheostomy, but we end up that way. Thankful that she can’t become extubated anymore, thankful that we can start mouth feedings and thankful for how much easier it is to hold her.

We don’t know to be thankful when they move her to PICU either. We are frightened by change and by new nurses. They are frightened of us. They have heard we are “very involved.” They have also heard we are “in denial.” Soon we are thankful to be there. We love the new nurses, the private Noah’s Ark room and the nurses are used to us being involved and have their own views of whether or not we are in denial. And we are oh-so thankful when we find out there is a place where they can give her ribs.

We know new things now. We know to be thankful when she can tolerate a larger feeding, when she doesn’t have to be suctioned too many times, when she does not have “episodes” where she de-sats and they have to work on her to keep her alive. We are thankful when she switches to the home ventilator, when she is accepted into the rib project in San Antonio and when we find out we can ride on the jet with her.

Then, eventually, there is a new hospital in a new state with new staff and we know to be thankful we are here. We know to be thankful for these two brilliant doctors who invented these vertical expanding prosthetic titanium ribs. We know to be thankful when they tell us they will do the surgery on her, even though they have never had a child with her exact problem. And even more, we know to be thankful when they say she does NOT have Jarcho Levin.

And coming home. We never knew how thankful we would be when she came home. How could we have? Ten months ago, we thought she would be wheeled down in my arms to our car and to our little carrier/car seat and our life would go on as normal, with a few more naps and one more diaper bag. But now we knew. Now we knew to be thankful for the ambulance drivers who brought her home in her already-forward-facing car seat. And we were thankful for the nurses and respiratory therapists who filled her room with items we had never heard of before she came. Thankful for strangers in our house taking care of our baby and thankful that at least we know she is ours now and we choose when to hold her and what her schedule is.

We now know things we never wanted to. And the things we know, we are thankful for. We try to help others that are a few months behind us in the learning process; new mothers and fathers learning things they never wanted to know. And they are thankful too, for the things they never knew…..