Counting our blessings

Saturday was the "First Annual Advocate Illinois Masonic NICU Reunion". NICU is the affectionate nickname for the Neonatal Intensive Care Unit. I suppose that other than coming up with a acronym that makes life easier when referring to something with so many syllables, "NICU" seems like a cute nickname; something to make light of something that is often so not light. The thought of bringing Gillian back there struck some kind of fear in me, like somehow we would get resuspended in the odd and fluid never ending day-nights like those that ran together for two months in the beginning. It also makes you face something you had so neatly packaged away in an unassuming mental storage space, so as to not have to remember how absolutely terrifying the whole thing was. It is pretty amazing the way we protect ourselves from our experiences.

Anyway, in spite of all those splintery feelings, I decided we should drop by. If nothing else, I wanted Gillian's doctors and nurses to see how healthy and well she is. I can imagine that it keeps them going to see babies that go on to be just perfect in spite of a super early start (in our case), or a very rough on-time start (in lots of other cases), as it were.

It was emotional to go back there with Sean and his parents-the same people I started the whole crazy trip with almost 9 months ago. There was a festive tent set up in the courtyard, with live music and hot dogs, and cupcakes-a typical outdoor summer party scene. There were lots of happy people everywhere with lots of beautiful happy babies, and toddlers, and children. Many of whom had walked the same walk we had. A closer look: intense conversations going on between the neonatologists and nurses who were there and tearful mothers and fathers clinging to their precious babies, no doubt thanking them for saving the life of their child; No doubt standing there with the same lump in their throat I had. The hugs they gave those doctors and nurses were different than the ones you give other people-there was some deep gratitude in them with a tinge of desperate appreciation and love. These doctors and nurses were responsible for the decisions that saved our children. These remarkable people kept them alive and growing until they could go home. Some of those babies were there a lot longer than mine..some for 5 or 6 months, but they all went home eventually. That is a testament to their dedication and their ability as practitioners...but with these patients, there is a whole lot of heart that makes the difference too. We, the parents, were all bonded..as we passed by, we all gave eachother these knowing glances, some deep acknowledgement that said "how are you, sister (or brother)?"... or "we made it, and our children made it, and this is true joy, isn't it?". That sentiment was thick, hanging in the air there...the hurt and painful memories that we had all let get covered up by the joy of our healthy, beautiful babies.

I saw many of the folks who were involved in G's care, but two were particularly important for me to see, Dr. Fox and G's primary nurse, Myung. It was our neonatologist, Dr. Fox, who sprinted off with Gillian seconds after they removed her from me and briefly held her up, saying "Here's your baby, Mom". After getting G intubated she came in to the recovery room and told us some details that I couldn't grasp in my drug-induced head fuzz. She was Gillian's main doctor the entire stay. At first I didn't care for her style-she was curt and matter-of-fact, and not particularly good at communicating with terrified parents (definitely not warm and fuzzy, and I wanted reassurance). But then, Gillian got the blood infection. Dr. Fox, who had been so protective and so conservative (often to the point of frustration for me, especially with how slowly she was building up Gillian's feedings, which in my mind delayed weight gain, which delayed coming home) with G's care, was like a hawk and jumped on the infection right away-not even waiting for the labs to tell us what kind of infection it was. She knew that early treatment could be the difference between life and death. And that was it for me-this capable doctor saved Gillian when she got critically sick with a blood infection, needing a couple of transfusions. I never questioned her again, because it was clear that she was slow and safe for a reason. And I decided I didn't need someone to sugarcoat the details of Gillian's progress or condition on a given day. Being realistic with my expectations was emotionally better in the long run. Dr. Fox was pleased to see us doing so well, and all I could muster was "thank you for giving me my girl-for saving her life", and giving her one of those hugs that said much more than I could say.

I was especially happy to see my other favorite-Myung-the best nurse on the planet. She was my friend, and my shrink, and my confidante. She taught be how to change G's diaper when she was less than three pounds and I was afraid I might break her, made me hold the feeding tube when we fed her, and even had me bathe her toward the end so I would know how...she made me take ownership of her ("she is your baby, you have to start acting like it!"). She and the lactation consultant held my hand the first few times we tried nursing, and were our cheerleaders to continue. In my estimation, I spent somewhere in the neighborhood of 30 hours a week kangarooing with Gillian while hanging out with Myung. For some reason, seeing her made me particularly emotional. She was so thrilled with how well Gillian was and how much better I looked (she was the only person during the whole ordeal to say to me "You look terrible. Go home and get some sleep. You're no good for the baby if you are run down and sick.") It was so wonderful to see her again, and to show her our healthy, happy girl. She loves her patients, and it shows with the way she touches them. I think she touches them the way she thinks we would want her to-like they were her own babies. I love that woman, and I never worried about G when she was on duty with her. We hugged and chatted through tears, and promised to keep in touch. I will take G back there some Saturday when she is a year old to visit Myung.

There was an incubator on display there...where Gillian spent her first 6 weeks of life (before the transition to the open air big girl bed); a glass box where I reached my sanitized hands and forearms through the armholes to hold her hands or stroke her head when she was sleeping. There was a tiny stethescope, with an end the size of a dime for the littlest patient...and the wee pee diapers for babies 1 lb to 2.5 lbs, the ones Gillian wore at first. I stood there and let myself feel what I needed to looking at those artifacts..the tiny purple pacifier they gave her for comfort before she could nurse, the little knit Cubs hat that every baby in the NICU got...the telltale blue, pink, and white blanket that they fashioned into an oval around her in the incubator to make her feel like she was still in my womb.

Don't think I don't know I have been given a tremendous gift. My daughter, my miraculous baby, is full of light. Sometimes I think she might explode with it. She was sent to me this way to teach me so many things. Just a few: how to stop and be in a moment, and savor it; what is the meat and potatoes in life, and what is fluff; how much stronger I am than I ever even considered I could be; how desperately I wanted this child; how much bigger and redder and deeper my heart could become...and every day there is some new magic. Our girl is worth every single second of that tortured period of our lives. Every time I hear her laugh, or watch her dance, or hear her squeal with delight, I am further from my storage space filled with NICU memories. I know that I should never forget those days-they are the measuring stick for our trials and our joy. It makes me endlessly peaceful to consider the "everyday angels" who, right now, are making life and death decisions for these special needs babies, who are holding the hands of parents who are afraid their babies might die (as they did with me when G was so sick), who are gently feeding, and bathing, and clothing these tiny resilient little souls twenty-four hours a day, and who get to tell the happy news that the baby can finally go home (the magic words you long for every single day). These people are giving us the chance to be parents, in spite of our inadequate bodies that expelled them too soon. For all these things, I am counting our blessings.

(These photos, below, show Dr. Fox and Myung and Gillian the day she came home (all 4 lbs of her)).