Tuesday, July 10, 2012

Posting Mash-Up

Mae's 4 month check up was yesterday. Time is marching on for our little muse, and I was happy we got in with Doctor Miles today. We like everyone we've seen in the practice, they do a spectacular job of being on the same page and having similar, if not exactly the same, philosophies regarding the practice of medicine. I think Dr. Miles is my favorite because she's the first one to see Mariana, and the first one to tell me that I have all I need to raise this gorgeous babe.
Four months ago I was in the hospital sitting in my bed after a c-section. I was jabbering away about I-don't-know-what-all. I remember Dr. Driscoll, the NICU doctor, coming in and standing next to my bed to tell me he had examined Mariana. He told me things that I expected, the fluid in her lungs, but his voice betrayed him and I knew something big was wrong. My mind thought oxygen deprivation had led to brain damage. When he said he suspected Down syndrome I felt relief. It was a known where as I didn't know anything bout the Thing I Had Feared. I remember the kindness and respect Dr. Driscoll showed. He told me there would be no secrets, he would tell me if he suspected something. He understood that I deserved to know everything he did. There was no sparing me out of a misguided sense of compassion.

The nurse told me she would take me to Mariana as soon as she could get me in the chair. There was a restriction on moving me because of the anesthesia, but the nurse said if I could get to the chair, she would push it. Slowly the medicine was wearing off, at least it was enough to get to the chair. She pushed me the endless distance to the NICU where I couldn't wait to hold my baby.

The NICU was beautiful and less clinical than I expected. It was a quiet, dark place with few babies. Mariana's incubator was in front of the nurses station. I was told I wouldn't be able to hold her, and instead introduced my face to my baby. I stroked her chubby cheek and mourned the reunion I expected to have. It was strange how I felt. I felt like I was watching myself in a play. The numbness may have been residual from the c-section. The anesthetist gave me something to help me relax, I am not sure though. I do know that it was difficult not to grab up my baby and do all the loving things that mothers do when they first hold the baby. My arms never felt so empty.

In my room I would think carefully about the benefits to Mariana's NICU stay. I would consider the pain I was in physically and the benefits of having good, solid rest instead of waking every two hours to feed her. I would carefully list the care she was given and the things I would not have to do once she was released because they had done them already. I pumped and watched my milk come in. I was thoroughly receptive to the kindnesses offered and the grace that poured out. The whole time I felt the precipice of fear beside me and the crook of the Good Shepherd keeping me safe.
Dr. Miles marveled at Mae yesterday. She was glad to hear of all her rolling and babbling. She congratulated me on the sleep and nodded her head in agreement about what we are doing at home. She said Mariana's tracking of the light with her eyes is perfect. We chatted about some of the things that are a bit lacking. Mae isn't pushing up on her hands, but still on her forearms and she is tucking her chin to her chest quite a bit. But Dr. Miles thought that intervention for those things in a month would be the answer. She wouldn't be considered behind on those things until 6 months of age.

There were some happy surprises. For one, when Dr. Miles was checking Mariana's head rotation, she used the light and called her name. Mariana stared at her face. When Dr. Miles moved her face, Mariana followed. "Oh good! It's a very good sign that she prefers faces to objects!" At that point Mariana started complaining with coos of annoyance. We started talking about not introducing food until after her 6 month check up and how Baby-led feeding isn't a great plan for Mae because she will reach to put things in her mouth, but that could be a sign of teething, not necessarily feeding readiness. "Oh, yeah!" I recalled, "She's already a rasberry-blowing fool." My point was that Mae is always blowing the saliva out of her mouth, which I always took as a teething sign. Dr. Miles about lit up when I said that. "That is another 6 month skill!"

For now, Dr. Miles is evaluating Down syndrome as something that ups Mae's risk factors, but she's tracking Mae on the normal development scales because she's off the DS charts. I'm really encouraged by this. I know we can cope if Mariana slows down, but why not enjoy the triumphant milestones when they come?
The doctor and I talked about getting in contact with other families who have a child with DS. I told her of the experience I had with a woman whose son had a host of difficulties. As she asked about Mariana I could detect a spark of... irritation?...as I spoke about my sweet baby. The thing is, I understand. I have had two instances where I have felt a surge of...something...at being around "normal" babies. 

One instance was when I was introduced to a woman who had a baby the same day Mariana was born, and named her daughter what I had wanted to name Mariana initially. Her baby was perfect and holding her head up so strong. Heck, her baby was pulling up to stand, could you imagine? And I didn't want her baby, and I didn't want to change Mariana. I'm not sure what I felt, or that there are words for it. It was like that for an instant, then gone, but it had left a mark where there had been none, and I still feel...shame?...for whatever tugged at me in that moment.

Dr. Miles knew exactly what I was talking about, probably because she's got a ton of experience. She thought she might be able to match us up with someone that would be a good fit. It's not that we feel like we need to be matched up, but it seems like a good idea to befriend someone who knows without having to be told. I don't know, I guess we'll see.
The rest of our crew are all bopping along enjoying the summer. They fight, play and argue with their parents in regular fashion. The guinea pigs got new digs in a proper hutch and now live outside, praise the Lord. Our sycamore tree ate our house, and the roof is leaking thanks to the tropical storms we were blessed with. The house hunting has begun in earnest, and Scott and I still have different ideas on what we'd like. The house I initially liked has been nudged down the list by another in the same neighborhood. We tour two tomorrow night, and then I leave for OR. All in all, time is marching on as per the usual, and we love it.


  1. Anonymous4:12 PM EDT

    Barbara, it's always so exciting to stumble across another mom of a chromosomally gifted daughter. ;) I know exactly what you're talking about with your blip-moment, the one in which you didn't want to change your child, yet you felt something green and envious and afterward felt ashamed. Julianna is nowhere near on-target for her "age" (she's now 5 and just about to start kindergarten, but in many ways is now behind her 3yo brother), but she is who she is, and she enriches our lives. Early intervention is a great, great gift, and the therapists may well become lifeline and support themselves. Also, it takes a long, long time to set up a good network of people who've been through like experiences, so don't wait until you really want to talk to someone before you go looking. We've been working now for two full years in central MO to put together a group visible enough that we can find each other and be found by those who need support. Privacy regulations are the pits.

    Shutting up now, before I become *really* annoying...

  2. Not annoying, awesome! It's a wild ride we are on, not least of which is sorting out some odd emotions that bubble up out of no where.