Wednesday, July 31, 2013

Day 14 - Eyes opened

A year ago yesterday, my mom went home to be with my dad. He was about to go to a slew of doctor appointments to figure out how to treat his cancer. He needed her more than we did.

I mentioned to friends that I couldn't go see Jonathan any more, with my mom (my chauffeur) gone and me not yet recovered enough to drive. Our girls weren't that great in the hospital room, and we were afraid they'd break something or expose J to germs that he wasn't strong enough to fight. Steve and I had agreed we'd take them once per week when they were well, so that they'd know their brother, but more than that was a mess of us hyper-sensitive nervous parents scolding our energetic and excited daughters. So nightly we divided it up. One parent helped with Jonathan's evening cares, the other parent put the girls to bed. It looked now like, until I got better, I would be the parent at home.

A year ago today my friend Katie called and asked if she could take me in for his care time. As he was exactly two weeks old, I wanted pictures of him. Without hesitation, I said "yes" and Katie came around to pick me up.

Kris, a nurse that had watched him several times, greeted us as we came in. She had been the first person to tell me I could hold him during care times, during his bedding change. That was about a week ago. We couldn't take him out of the isolette, we couldn't hold him properly or cuddle with him. We were permitted only to hold him up high enough for the nurse to put down fresh sheets or to "zero" the scale so that he could be weighed in bed. The first time I tried, I had felt like I might break him, but she gave me confidence, encouraged me to wash my hands a fifth time before putting my hands in the isolette, and told me how to handle him to cause the least trauma to his still developing central nervous system. (No stroking his skin, basically.)

To me, he was great physical therapy. He gave me the motivation to try to stand near his bed long enough to cup him in my hands for care time. It was for him that I wanted to be off the heavy pain killers - so that I could drive to see him each night by nine pm, when the bedding was changed. The standing always hurt toward the end, with my core muscles reminding me of the c-section, but it was worth it.

Jonathan's eyes were still fused shut. That's not uncommon for these earliest of preemies. Kris had told me they should open any day now, and that I shouldn't be alarmed or surprised if only one opened at a time, they don't typically unfuse together. She reminded me of this as I put my hands into his isolette to pick him up. She mentioned again how surprised she was that he was in his 25th week of gestation and still hadn't opened them.

"Oh," she said, "Also, parents are often not here for the time when the babies eyes open, so you will probably not be the first one to see his eyes."

I nodded and picked Jonathan up in my cupped hands. He stretched. He must have been sleeping. (Hard to tell when your eyes are always shut, but I'd guessed it because he'd been so still.)  His forehead wrinkled with the stretch, and as though he'd done it all his life, his eyes both opened.

A baby's eyes at that age don't look at anything. But his eyelids blinked twice and squinted for the first time, and since I was the closest thing to his face through the thick clear plastic of the isolette, I'd like to think that they were looking at me.  It wasn't true, not really, but the moment still felt like a gift, and a moment I would have lost if I had stayed home.

Of course, I didn't bring my camera. Seems like a common theme in our house.

The NICU nurses told me they would wait a moment, "to give you a moment with him" before they put the newborn drops in his eyes. Like many things Jonathan, he must have been close to the oldest newborn to get the eye drops prescribed to be given moments after birth.  Then one of the nurses found the camera they use to take pictures of infants upon admittance to the NICU. She pulled it out and took a picture of him for me, so that I'd have some way to remember the day.

This is what I wrote on our care page:
It's almost like seeing the world calmed him.  After we got him all comfy (I changed his diaper, swabbed off his mouth and got the goop off of his newly opened eyes & the nurse put 2 mls of milk in his tummy), he got his blood oxygen up to 100% for the first time I've ever seen (this isn't long term a good thing, but short term means he's very happy). He almost never sats high (saturates high) around evening care time.  Normally he hates to be messed with.  Last night instead he laid there calmly, chomping on the wet gauze I'd brought him for his mouth and staring out at the world.
2 weeks old, 1 lb 6 oz. Moments after his eyes opened, he is squinting from the flash.
Saturating high, by the way, means having high blood oxygen saturation. It means the baby is happy, as he or she is breathing better, taking in air better, and thus less dependent on highly oxygenated air. It's like a preemie's way of smiling.  There is danger if a baby saturates high too much (is always up near 100%) as it can lead to blindness, but saturating high means that the nurses can turn the level of breath support down, so all in all it is a very very good thing.

TODAY, July 31, 2013 - a year later
Jonathan's accomplishments today were significant. He sat by himself for three to five minutes. The motivator for him was the pail of water toys that the developmental teachers had put before him. He didn't splash at first. He doesn't do most things the way you'd expect a baby would. Instead he methodically worked from right to left, moving every lever he could find, picking up and moving each boat in the water, and then finally practiced dipping his left hand in the water, moving his fingers, and then lifting it out again, while grasping at a plastic fish with his right hand.  He rested his upper arms on the basin to give himself a bit more support and steady himself while standing. He had this almost adult-like concentration on his face, but he seemed to be enjoying himself greatly.

I was proud, so proud.

Oh, and today Katie (the same Katie who brought me to the hospital a year ago) sent me a note with a link to this blog post ("Candid Thoughts on Heavenly Reunions") written by an author and friend who had lost her son at the age of four to cancer. Since I know some of you readers are walking with parents of preemies or those who have very sick children, I pass this on to you. She describes well how best to respond (and how not to respond) to those who have lost a child.

If you have a moment, jump over to her blog. It'll be worth your time.

No comments:

Post a Comment

I love to hear from readers. Please post your comment below or contact me at