Tiny Baby

scarface

scarface
Originally uploaded by peep's mama.

They used crazy glue instead of sutures. He didn't even cry when they did it. I might now though.

baby savers

Moreena over at The Wait and the Wonder is asking for anecdotes about the medical professionals who have made a difference and found a special place in our hearts. So here is mine:

Jeanine. Just writing the name brings up so many memories. She was the NICU nurse who was in the delivery room when my son was born sixteen weeks early. She stayed after her shift was over to make sure he was settled and that the night nurse was well prepared. When I was wheeled through to glimpse him, she held my hand and told me how brave I had been in the delivery room. Her liquid eyes held hope and her soft voice calmed me in a way I didn't think possible. She became one of our primary nurses, meaning that each time she was on duty she would care for our boy. After several weeks of watching her care for this tiny fragile person, the little being who was my whole life, I realized how much she loved my son. She cared for him the way I would have cared for him if I had the medical knowledge she held.

She took his temperature, changed his diaper, listened to his heart, monitored his oxygen settings, changed his linen, put in IV's. All of the things required of a NICU nurse. But she made sure the lights were dim and the room was quiet. She took breaks from diaper changes when his heart started racing or his saturation levels dropped. She warmed the stethoscope before placing it on his skin. She picked out special blankets to keep him warm. She slipped the IV in so quietly that he never even cried. And she sang to him, held him, whispered words of love to him. He became her Love Bug.  She cared for him the way I would have cared for him if I had the medical knowledge she held. There are not enough words to thank her for that. Not enough words in the entire world to thank her.

mini rant

I just need to write this down so it is out of my head and I can move forward with my day.

I intensely dislike when people tell me that my baby is fine, that he will catch up by the time he is two, that everything is going to be okay.

I hope against hope that he is fine. (but really, isn't that relative, what does it really mean?) (and actually, no matter what, he is fine to me. we are fine. so stop saying it.)

I know for sure that he will never catch up in the way that they are suggesting because his brain is physically different that that of a full term baby. He will never grow out of his premature brain. This doesn't necessarily mean that there is something wrong, it just means different. This is a medical fact. A neurologist can look at an MRI of a full term baby, now grown, and a premature baby, now grown, and see physical differences. They can even estimate how early the baby was by looking at the grown brain (oh, a 24 weeker, or a 34 weeker) Premature babies brains have less myelination which means their neurons fire more slowly (imagine a house with wiring that doesn't have enough insulation). They suffer from sensory interference. How to explain? Hm. Because they saw light when they were not supposed to be seeing light, their hearing can be affected (this can mean hearing loss or an auditory processing problem). Because they heard sounds when they were not supposed to hear sounds, their vision can be affected (ROP, other visual problems, visual processing issues). Your brain gets one chance to develop and you can't go back and regrow it - the way it develops is permanent. So my son's brain will always be different than if he had been born full term. So, he will never catch up and be like a full term kid in the way that people are suggesting to me. Not necessarily bad, just certainly different. So stop telling me not to worry or watch because he will catch up. Seriously, stop it.

And please please please stop saying that everything will be okay. Because nobody has those assurances. Things in life suck it and suck it hard sometimes. That doesn't mean things aren't okay. Really. The biggest lesson I learned from our NICU experience is that things are random, things are hard, and at the same time things are beautiful and magical. No one knows the future, but I do know that it won't all be perfect. However, it is our future, and it will be filled with both good and bad times. What you can do is be a good friend when the times are bad. That is all I really want to do for my friends. I can't tell them that their mom's will get better, or they will find a job, or that their kids will always be healthy, but I can tell them that I will be there to listen, to hang out, to babysit, to make food or do laundry when things get hard.

So, rant over. I feel better and ready to start my day. Feeding specialist at 9:00, physical therapy at 1:00, a whole lot of fun, and love, and music, and play in between.

Mostly for my friend Pixi, but you might like it too

So, I have a friend who has influenced me and helped me push myself to grow probably more than she realizes. One of the qualities I respect in her is her appreciation of the complexities of art and the understanding of how complex the artistic process can be. Because of her, I am always on the look out for great art in unsuspected places (train stations, subways, coffee shops, grocery stores). So, thanks Pixi. I thought you might enjoy this: Calder Toys (via Sweet Juniper). Thanks to Dutch's research there are some excellent links and even a video of Calder's circus. Please go and read what Dutch has put together about Alexander Calder and his fantastic toy designs. You should also stick around to poke around in the archives. Dutch and Wood write some thought provoking pieces, not just about parenting, but also about life.

the early intervention dance - cha cha cha

I love me some early intervention (EI). I really do. I know that my kiddo is doing as well as he is doing because, in addition to his parents, he has an entire team of people concerned about his well being. In fact, we have a physical therapist, a developmental specialist, a feeding specialist, a speech-language consultant, and a service coordinator who visit each week or every other week to check up on my little guy (we are in the process of also adding an OT to the mix).

These people are very important to my kiddo. He loves them. His first word was spoken for our PT. The only person who has received actual kisses - our PT. When you say that Sean is coming over, my kid does a funny little happy dance and giggles with glee. And, I love these people. They love my son. They have his best interests at heart. They worry about him with me. And they are very good about letting me know when I don't have to worry.

But sometimes, it is also hard to have so many people in our lives. Mostly it is from a practical place. It is hard to keep my house clean, to be dressed with my teeth brushed, to have the kid fed and napped, to be ready to smile when I am so tired/cranky/worried. And I have certainly attended sessions in my pajamas, with greasy hair, and my teeth not brushed. Being the professionals that they are, they have never said anything but "It's okay. I see lots of parents in their pajamas." Usually I can just let it go and not worry, because I know I am doing the best I can, but still it lurks in the back of my mind. What do they think of me, with my dirty dishes in the sink, the dog hair on the floor, piles of laundry, and my unshoweredness?

The other part that I struggle with is harder to describe. It is a line I walk between just mothering my son, just spending time with him, and following through on the therapies with him. Always, in the back of my mind, I am thinking, "Is this good for his fine motor development? Why is he doing that - is that circular patterning? Should I be worried? How many words is he saying? He is really enjoying playing with that car, I know if I go and get him out of the W sit it will totally throw off his concentration, but i know he isn't supposed to W sit. What do I do?" It is always there, this running list of what he should work on and what he shouldn't be doing. I want to turn it off, but then I think. If I turn it off and miss something, and then he isn't getting what he needs, what kind of mother am I? So, always, it is there. And, really, there are times when I just want to have a normal interaction with him, without all that stuff. To just enjoy him, for who he is in that moment.

Then there is the managing all the information coming in from many different people. Keeping track of the appointments could be a full time job. I have only missed two, thankfully, but I am sure I will miss more. Sometimes it just happens, you are at the grocery store and then you realize that there is a therapist knocking on your door at that very second. And trying to merge all the strategies can be difficult. Our developmental specialist likes to work with the boy in his highchair, because his attention span is longer and he is more focused. Our feeding specialist wants us to only use the highchair for eating. We tried a table and chairs for our developmental specialist sessions, but he needs to be more contained. So back to the highchair. How do I meet both of these needs, the focused work time with the need for him to eat? Ack. It can be overwhelming. Luckily, our service coordinator brought over a desk that is doing the trick. But still, it is just so much information. And homework. I always have homework. Which is great because it does give me specific things to do, and trust me, with as little as I know about babies, I need these things, but every once in a while I just want a break.

Now, don't think that I don't appreciate or love our EI team. I don't know what we would do without them. In fact, they are one of the main reasons we are staying where we are instead of trying to move back down south. I know that this team is providing excellent care for my son. When I talk to other parents and hear some of their experiences, I know that our EI team is even better than great. They are phenomenal. It is just that sometimes I wonder what it is like to parent without a team of specialists, to walk the high wire without the net.

visitor

Hi. My mom is here visiting. I feel like a heel typing on the computer when she has come so far and is only here for a few weeks, so that is my reason (excuse?) for spotty posts. Here, look at this, it will distract you from how lame I am...

no matter how small

I am rendered wordless. There just aren't words. When I watched the little man trailer there were words. I felt crushed and helpless. It took me back to so many bad times. This time however, I am just in awe. Yesterday three dvd's arrived at our house. They are the dvd's of a project in which we participated while still in the NICU. The project was through Vida Health and was focused on developmentally appropriate care for premature babies.

Watching the dvd brought the whole NICU experience back in a way that I couldn't have imagined. Not bad. Not good. Just the memories. I could smell the soap, the disinfectant, the floor polish. Hear the alarms. I remembered the walk, through the front revolving doors, past the gift shop, past admitting, around the corner, down the hall, past security with just a flash of my arm band, the never ending wait for the elevator, off on the sixth floor (agonizing at each stop on the way), stopping at the desk and asking to be allowed to see my baby. Chatting with the ladies at the front desk while waiting to be buzzed in. Washing up before actually entering. The trek down the hall and into the room, scanning for his isolette. Is he still there? Is there new equipment? Is there a free chair or rocker? Walking over and quietly peeking in a slit in his isolette cover. Whispering hello. Waiting for the nurse to let me know if it was a no stim day (can't touch) or if we would be able to kangaroo. Waiting for a do-up, so I could take his temperature and change his diaper. Organizing his drawers. Getting the new books out of my bag to put on his shelf. Taking out my knitting. Sitting, knitting, and singing softly. Singing anything. Bruce Cockburn's Wondering Where the Lions Are. Bob Marley's Three Little Birds. Hank Williams' Hey Good Lookin'!

Remembering how we always moved so slowly, so carefully, each movement in sync with what our kiddo needed. Taking his tiny diapers over to weigh them and record the data on a chart by his isolette. And the kangarooing. Oh, sweet 'roo time. Watching the nurse wheel in the recliner, set up the screens, turn off all the lights. And the bliss of a blanket right out of the blanket warmer. (I wonder if we can get on of those for our house?) The anticipation of watching them get him ready to be lifted up and over onto my chest, knowing that in a few minutes I would be holding him. The sleep I would get once he settled in and got comfortable.

Collecting my pump parts from my bag and walking to a pumping room. How annoyed I would be if all the good ones were taken. I hated to leave the NICU to use one of the parent rooms further down on the floor. The smell of castile soap as I washed the parts after pumping. Labeling milk. Giving it to our nurse. Feeling proud when I had two containers to give. Taking prolactin injections to boost my supply. The smell of the alcohol wipe and the sting of the needle. The terror of the first shot, running around the room begging my husband not to do it, crying hysterically, and then realizing how little it hurt. Finally being able to give myself the shots.

Packing my bags at night when we needed to leave the NICU, putting in my knitting and the kiddos dirty laundry. Making mental lists of what I needed to get together before coming back the next morning. The breathtaking pain as I kissed him, told him goodnight, prepared myself to walk out without him. Making sure I waited until his night nurse was on duty and we had a chance to talk about his day. Preparing to leave more than once, and then finally finally getting the nerve to walk out. The long, quiet drive home. The not sleeping well and the calling to check. Calling every time I got up to pump. Worrying when it took the nurse a long time to get to the phone, hoping that he was okay and she wasn't having to bag him right at that moment. Feeling better after chatting with Karin or Christine or Dwayne and having them tell me he was fine and go to sleep already. Finally sleeping only to get up and do it all over again. 104 days.