Wednesday, February 16, 2011

The Laundry List

I might need to complain a little today.  I'm tired. So, so tired.  Elijah was up for brief wakings so many times last night that I lost count.  It could be a number of things.  Plausible reason #1: It could be the fact that when I went to nurse him at 11:30pm last night, my body decided there was not going to be any milk.  Great.   I started supplementing with formula about a month and a half ago, because he just wasn't gaining much weight.  My pediatrician and I thought it was worth a try to supplement the nursing with formula.  While Elijah was well hydrated, we wondered if my milk was "fatty" enough for him.  Sure enough, by substituting 2 bottles of formula for nursing feeds, he gained 14oz in a month (compared to 3 oz the previous month, and no greater gain than 6oz in the 4 months before that.)  When he refused to nurse last night, and seemed darn pissed about it, I put him back to bed and thought that we would give it a go without the late night feeding and see how he did.  Well, he did not do well.  He never woke up crying from hunger it seemed, but he woke briefly on and off throughout the night and early morning.  This isn't the first night this has happened, otherwise, I would put a check mark next to Plausible reason #1.

Plausible reason #2: Teething.  I see no teeth. I feel no teeth.  It seems that many kids with Down syndrome don't even get their first tooth until after their first birthday.  Many get them before that.  He's not fussy.  He's not cranky.  He's just up a lot.

Plausible reason #3: A VERY common issue amongst children with Down syndrome are sleep problems.  Sleep Apnea rating high on this list.  Elijah has been a perfect sleeper since almost day 1.  He was sleeping through the night so early on that I almost lied about it to other Moms, so I wouldn't get the evil eye.  Last summer we attended the "New Families BBQ" held by the Down syndrome association of Los Angeles (DSALA).  I met a really cool family there, and they mentioned that their son with Ds, has been having a lot of sleep problems and they are having trouble getting it figured out.  The boy's Mother asked me how Elijah was sleeping and I told her really well.  She casually mentioned that it doesn't seem to show up as a problem for many of our kids until they are a little bit older and are more aware of their world.  That little tidbit has been filed away in my brain, waiting to haunt me the moment Elijah has an interrupted sleep pattern.

All of this formula supplementing has not been good for my milk production, and once again I'm feeling conflicted.  It's not just all of the things that go through a woman's mind when she is considering the end of the nursing period: the bonding time, the helpful antibodies that breast milk contains, etc.  I also have the added weights of: "Nursing is especially good for babies with Ds, because it helps work the muscle tone in their faces." and "Children with Ds are considered immuno-compromised, so the antibodies in breast milk are especially important."  So, my breast milk is tapering off, because I'm nursing less and I don't have the energy (or frankly, the time) to start pumping 12 times a day to get my supply back up.  And all for what?  Milk that seems to not be "fatty" enough for him anyway? I'm gonna hang in until the bitter, milkless end, but I'm not loving this transition.  I'm trying to keep my eye on the prize: I usually lose the last 5 lbs after I stop nursing.  And yet...

I'll admit that I am a bit of a "heady" person, but there is specifically one reason that I get so easily thrown for a loop with Elijah: The Laundry List.  "The Laundry List" (as I call it) is the list that pops up, via Google, of everything that could potentially go wrong with a child who has Down syndrome.  Parents of children with Ds talk about these issues as though they are talking about what's for dinner and how best to prepare it.  I guess as things come up, you just deal with it. Like everyone else.  Only I get scared at the slightest indication of a problem, that it could be some looming bigger problem.  The Laundry List, is probably the number one reason I was so terrified when I received the news of Elijah's diagnosis.  I considered writing out the "list" to let people know what all are risk factors, but I decided against it.  I decided against it, because what is important to know is that none of our kids get ALL of these things.  So, just like in any situation, you take it as it comes, and deal accordingly.  However, it's a bit of a mind trip to know that because Elijah's "odds" are higher, that we should be looking at preventative measures whenever possible and keeping up with frequent, thorough medical check-ups. 

I'm also personally complaining, because in addition to being tired, I hurt.  I've had a corn in my right foot for 2 years and when a new corn (a very painful, excruciating corn) popped up on my left, I knew I had to get in to a Podiatrist to have them removed.  I did this on Monday afternoon.  The last time I had the corn removed, I had immediate relief.  This time, the right foot still hurts.  The doctor assured me it is just tender from having the corns taken out (they literally slice it out. No drugs, just a sharp razor tool.  Although because of the thick callouses on the bottom of the feet, it really didn't hurt.)  I hope so.  I'm not feeling the relief yet and am hoping that I get to feel some relief before those corns grow right back where they started from.  Add to that, my super-sore body from all of the yoga and dancing and Stroller Striding I have been doing and...well, that is why I am complaining.

I have complaints.  Actually, when I think about it, they add up to a little bit of a "Laundry List" don't they?  Come to think of it...I should add the fact that my laundry is piling up to my laundry list of complaints...
Not happy.
Hoping for sleep tonight


Brenda B. said...

I have been there done that with the "laundry list" of issues that come with having a child with Ds. It can be overwhelming at the beginning, and all throughout the first year. I know that as time has passed I have calmed down and been able to go weeks without thinking Gabriella has some crazy medical problem related to Ds. Your little men are so handsome and so blessed to have you as their momma. Looking forward to getting to know you (and your family) better!! xoxo

P said...

Sleep studies are recommended (and done every other year in Canada according to Nancy at Club 21!!!). But I think it might be fine to wait til three?

But get hearing tests every 6 to 12 months for sure! 80% hearing issues--and we need to hear to talk!

The list sucks but I always think of the quote about it from Roadmap to Holland book: I recall she wrote, "If that's the FIRST list, I don't want to see the second." I laughed and got some great perspective reading it.

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