Skip to content

The Blue Book

July 1, 2013

S. was born 4 weeks 6 days early. One day sooner and he would have been sent to the NICU automatically. As it was, hospital staff reported every hour on his levels—glucose, temperature, bilirubins—and debated. He scored right at the minimum to keep him in regular care. They discharged him after two nights, citing insurance policy. They gave us a lot of notes. A lot of warnings. A lot of things to look out for.

That’s when we started The Blue Book. A 4×6 spiral bound notebook, kept clean and in tact by a blue swirly cloth cover made by my sister Beth. The Book page 1: Feedings. Feeding a baby is the simplest way to treat jaundice. 1:30 am: 22 CCs. 4:00 am: 18 CCs. 6:00 am: 7 CCs.

Twelve hours after arriving home, we were back at the hospital to readmit S. through the ER. High bilirubins meant spiking jaundice. Still on page 1: 2:45 pm: 26 CCs. 4:00 pm: 16 CCs. Margin note: IN TRIAGE.

Details of those days don’t need to be written again. They’re already written in The Blue Book. J. and I took turns logging each doctor consultation, nurse visit, diaper change, hour passed under the lights, and, most importantly, jaundice-fighting feedings.

8265-0

We brought S. home a second time. We fed him as best we could. Prematurity and jaundice-induced lethargy meant he didn’t cry and didn’t breastfeed, didn’t do anything but lie yellow on our laps. Day five of his out-here life: 2:00 am: 34 CCs. 4:30 am: 31 CCs. Pages pass and new data appears. What is coming out? Color? Consistency? Then, notes on doctor calls. Then, how does he react to breastfeeding training? Then, how do I react to breastfeeding training? Then, exactly how many CCs are breast milk and how many are formula and what is the percentage split? (About 50/50 in the first couple weeks.) Then height, weight, head size. At three days, eight days, seventeen days.

Then, commentary. Saturday, July 7 (12 days old): Growth spurt! Thursday, July 12, next to the 4 am feeding: Zombieland. Monday, July 16 (21 days old): Cried! Tuesday, July 24: Woke him for CSA @ 6 and he objected. Tuesday, July 31: in J’s writing, head turn? A reminder to ask the pediatrician why he only looks to the right. My writing, the response: torticollis. The first time we know something isn’t quite right. The word, noted in a margin, that led to where we are now, almost a year later, when pediatrician, physiatrist, neurologist, occupational therapist, physical therapist, music/movement instructor, and speech therapist are working with our son to diagnose, treat, catch him up, overcome. Tuesday, July 31, 2012: head turn? 

I remember a rich discussion with J. about page breaks. Is a day-page from midnight to midnight? Or is a day-page from breakfast feeding to middle-of-the-night feeding? What is a 4 am feeding, breakfast or middle-of-the-night?

We used up the first book. So we started a new one. Habit and Crutch and Compulsion and Why Not? And another new one. And another. On Wednesday, November 14, S. has a touch of rice cereal for the first time. Tuesday, November 20, is Helmet Day #1. Naps now get recorded. Sunday, December 2, his first real solid food: bananas. After that, a perfect nap. We add an empty box for brushing: don’t forget to brush his arms for sensory input. We add a box for water. We remove the box for brushing. Margin note: no more brushing, not sensory. Fever, first tooth, first flight, fussy. I know the day, the hour. Beets on Saturday, April 6, at 6:30 pm. Funny-looking poop at 7:15 am on Sunday, April 7. He napped a total of 3 hours 15 minutes on Thursday, April 25. Isn’t that good to know? Isn’t it good to know he napped only 1 hour 45 minutes on Friday April 26?

It is good to know these things. It is good to remember. It will be good to keep this knowledge for him for the sake of an unknown future need. He lived. I’ve got proof.

Last week, Tuesday, June 25, S. turned one. I logged his day. Yogurt and berries for breakfast. AM nap 1 hour 20 minutes. CHECK, he had water. Avocado and tofu. Margin note: ONE YEAR OLD!!!

Then, across the bottom of the page, squiggly lines. I retired The Blue Book.

photo

I have a baby and he has basic needs and he has additional needs and he can not and will not remember any of this year. Basics slide first from memory. Beyond a few hours, what of that sandwich? Beyond a few minutes, what of that sneeze? I don’t remember pain. He won’t remember hunger. I will remember the logging.

I still reached for The Blue Book the rest of last week. Pen too. Had to remind myself it’s over. Until the weekend when it slid like a sneeze. We celebrated his birthday on Saturday. Yesterday we put him down for a nap around 9 am. He fell asleep. Without my logging it! I checked the monitor, checked again. Around 10 he was still asleep. He slept for about an hour? A little more? He slept. He ate, too, yesterday. Not a lot. Mental note: teething pain? But he ate some. Enough. He’s a year old. He knows when enough is enough.

From → Life

5 Comments
  1. What a journey. I remember the bili-lights ordeal from my oldest daughter (now about to turn 5). For a first-time mom, it was nerve-wracking and painful to not be able to hold her and nurse her. I never needed to write it down… the image is burned in my brain. (And because I’m currently 8 months pregnant, just the thought makes me weep as I type.)
    Those notebooks are going to be amazing to find 20, 30 years from now. Hold onto them forever. My mother still has all the notebooks from my days in Early Intervention, before I started first grade. I love looking through them now, 30 years later.

    Like

    • Wonderful to know you’ve got access to those EI notebooks now and, more, you enjoy them. I have notes from S.’s EI sessions—eight months so far. I should organize them a bit better for him in the future. Thank you for reading and sharing! And good luck in the next couple weeks!

      Like

  2. I found this post to be really riveting and emotional, because when I first got sick with RA, I also kept a notebook very much like yours- I logged everything I ate, how much I slept, which meds I took, and circled painful joints on a little stick figure, all to try to impose some logic onto a scary new situation. It felt so similar to what you are describing here. Over 10 years later, it is actually almost impossibly painful to read it partly because it so palpably brings back the feeling of that period of my life, but also because I wish I could go back and reassure that sad terrified version of myself that things would eventually be so much better. The last time I read it, though, I noticed a page from my first visit with my then new doctor, the one who eventually turned everything around and made my life livable again; after examining me, he looked right at me and said “well, we can do better than THIS!”. I wrote it down, with stars around it, when I got home. Many years later, I brought him the book and could point to the exact moment when he had given me hope, and cry a little with him for that poor girl. I don’t read that book anymore, and all the things I logged then are things I just unconsciously monitor as part of daily life now. But looking back at that page together with the person who brought me through that terrible time, was one of the most profound moments of my life, all because of a little notebook.

    Like

    • Wow wow wow. All because of a little notebook. That’s so moving and so lovely, yet each page contains a whole lot of fear and pain too. There’s a This American Life story narrated by a man whose uncle keeps a daily log, a list, of everything he does, everywhere he goes, everyone who calls. The narrator ends up thinking he does it because it gives him something to do, a daily way to avoid feeling lonesome. I think that’s partially true, but in your case, that “something to do” wasn’t to add to your life, it was to control the chaotic parts of it. So interesting, in terms of memory, record keeping, and how the tiny things we do one day, if recorded, might come back as profound. Thanks for sharing this!!

      Like

  3. My heart is like THIS BIG, all full of love for you and your little guy. Onto the next chapter…

    (I also haven’t been to the actual site in awhile because all your posts come through my reader; it looks lovely!)

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: