Monday, August 25, 2008

"Underweight" child.

When my daughter was 6 months old, things started going haywire with her growth chart. By haywire, I mean she wasn't gaining weight the way they like to see it happen with kids her age.
By not gaining weight the way they like, I mean her growth curve plateaued. Flatlined. Freaking STOPPED. It's almost impossible not to panic in that situation.

The worry was compounded by the night, referenced in the previous post, when she had what we later found out was an absance seizure. There were no more until 7 months, when she had several more of them. She was hospitalized, an EKG and EEG were run. There were blood tests and the fear in our house was a fog as thick as pea soup. We were absolutely terrified.

The tests were all normal, and there's not been another seizure since shortly after that hospital visit at 7 months. Ultimately, after a lot of research and connecting of the dots, when we saw a recurrence of the rashes that appeared when she had seizures, we found out that she is extremely intolerant of foods that are high in salicylates. What started out as a major orange juice craving for me turned out to be dangerous for her - but it saved us the scare of her first introduction to orange juice being straight out of the cup at around a year, when it might have been incredibly dangerous for her.

Back to the weight thing.

We could not understand why she wasn't gaining weight, blood tests had ruled out any genetic or metabolic reason, and we were all just perplexed. On paper, she fit the definition of failure to thrive. However, we knew that couldn't be right. She was ahead on every possible milestone and doing extremely well. In fact, if we had never laid eyes on a growth chart we'd know she was petite but never would have thought something was wrong with her. Even with the people who asked "don't you feed her?" At one point we were having weekly weight checks. I'd get excited, knowing she'd eaten really well in the previous week, only to be devastated by a growth of an ounce or two...sometimes none. I'd just know she'd grown, her clothes fit differently.

Then we realized during one two month period, she'd gained only a few ounces but she'd grown two inches in height. Further talk with the pediatrician pointed to the knowledge that calories go first to their growing brains, then their heights, THEN weight. She had two out of three, and we decided unless there were other reasons to worry, we were going to STOP freaking out about this.

It was hard to let go of the worry about why she wasn't gaining, especially having heard that kids grow really fast the first year and slow down the second. My daughter was the complete opposite, and when she hit 18 months she really started gaining faster. She's still petite, but you'd never look at her and think she was underweight. She's tall and thin and has a quick metabolism. She eats until she is full and stops, something many of us just don't know how to do.

Last night I talked with a friend who was worried. Her son, 20 months old, hasn't gained much weight in recent months and her pedi has her worried. I've seen him very recently and petite isn't a word ANYONE would use, but because he's in less than the 10th percentile for weight (he's TALL!!!!) they are concerned. She was asking me what we did with Em and food.

I told her the things my friends told me when I was worried about my own baby. To keep offering healthy foods, including good fats, but don't force food. To avoid making eating a power struggle and look at the baby, not the growth chart. To remember that if someone is in the 90th percentile, SOMEONE has to be in the 7th and that doesn't mean there's something wrong with them. That it's okay to rule out any problems, but assuming all comes back well it's ok to just acknowledge this may be his body type and that's ok. I reminded her of her brother - tall and lanky his entire life. I told her if the tests come back ok, and I'm confident they will, then to go with her instincts. If she wouldn't have worried BEFORE looking at the growth chart, it's ok not to worry after.

I realize the system of weight checks and growth charts is intended to track a child's progress, to catch problems before they get out of hand, but this system is not perfect. Just as there are children who achieve developmental milestones on their own time, they aren't all going to grow at the same rate or on a nice little curve.

And for the record - if you look at Em's growth chart now, and cover the plateau with your fingers, she's right back on her original curve. My son is now at the age where she started plateauing. I've introduced foods in the same order (Though I'm not drinking OJ while nursing!), and he has gained in a completely different manner. He eats more, gains more and weighs what she did at over a year. More than ever I realize she grew and is growing the way she is meant to, and so is he.

Wednesday, August 20, 2008

Reach out, reach out and...oh. wait.

When Emily was a newborn, I was amazed by so many aspects of motherhood. The reality can be so different from the imagination at times, but I'd never even really thought about how her cries would affect me. Yes, I thought I would pick her up and comfort her. I knew I would try to calm her with loving noises or songs or rocking motions.

I didn't realize the effect of a baby's cry on her mother would be so physical, so instinctive that I would react before I'd consciously acknowledged the cry. I lost count of how many times my body tensed, my arms moved and my breasts leaked. It amazed me there were nights she would cry and I would find myself by her side before I was even fully awake.

The night she had her first seizure, she was 6 months old. I was up late, trying to get some work done, and I heard a cry from her room that was different than anything I'd ever heard from her. It wasn't a diaper, hunger or discomfort. Something was WRONG.

I had her door open, light on and had her in my arms before the cry itself was even finished. It was an instinctive, gut reaction and while I don't know exactly what I'd have done if the boogey man had been in her room, I can tell you he'd have been very, very sorry he was.

As someone I once knew used to say - I told you that so I could tell you this:

I have tried to understand my mother, and it is just never going to happen.

So many times in so many ways she has let me down and I've been the walking definition of insanity, expecting one day things would be different. I've felt deep down that somewhere in there she has the capacity of being empathetic or at least understanding, but I'm finally acknowledging I was wrong.

I've tried picturing her as a young girl, as a teen, as a young woman with a family. When I think of her in this way I fully recognize that she never set out to be the way she is, didn't intentionally decide she was going to cause the hurt she has. It makes it a bit easier to think of her that way, but it doesn't erase the way she was and is. Doesn't make it easier to swallow when she lets me down, yet again.

My mom works in a profession where she is bolstered by the notion of being needed, and more times than I can count she has put the people she works with ahead of her family. Treating them better, being there for them when she is not for us, constantly reminding us that they need her, that they are like her children. Except she treats them better than she has treated/treats us, so the last one is hard to swallow.

I understand having needs outside your family, I get it. But when one of the people she works with had a medical issue recently, she called me in a panic and worried. She kept saying that losing him would be like losing one of us. Only, she's treated the medical issues I've dealt with in the last year as an inconvenience. Mostly I hear from her if she has a problem and wants me to help her with it. Financial or otherwise.

When she called about this medical issue, I was torn. I knew the person she was worried about and I prayed for his well-being (he's fine now) but I also knew that when I was having surgery, she really couldn't be bothered. She moved heaven and earth to take care of this person and even my dad took several days off. There was nothing like that with any of my medical issues. When I was put on modified bedrest and told not to travel more than 30 minutes from the hospital with the level III NICU, she didn't even come to see us for Christmas. They didn't see my son until he was a month old. They live 45 minutes away. She did offer to come when he was hospitalized for pneumonia, but didn't. She didn't offer when we went back to the hospital because he almost bled to death after his circ. She didn't come for my daughter's 3rd birthday. She did come for my son's baptism, last month (5 months after the last time they'd been here) but left early, in a huff, because I didn't stop cooking immediately when she wanted to show me something, even though I was just trying to get food on the table for everyone. But I digress!

Shortly after that phone conversation, my sister came to stay with us so my husband and I could go to an event. My mom called when we were getting ready to leave and said, "I've been thinking about our conversation the other day..." For a brief, stupid moment I thought maybe she was going to say something about likening her clients to us kids, about how that might have come out wrong or maybe say something about how she'd been worried about me too at some point in all this.

There was nothing like that, however. She has some health issues of her own, and she was calling about the pain medication I was given by mistake that I can't take. It was yet another example of me thinking that maybe, just maybe she might come through and kicking myself in the butt for having that hope.

She called last night, a few weeks now after the incident above. Not to talk to me. Not to find out how I am or even tell me how she is. To ask me to ask some billing questions of a company she deals with, when she had all the information to do so in her hand. I mistakenly decided to tell her I'm overwhelmed, I'm frustrated, I'm trying to recover from all the medical crap and not getting enough rest or relief. She really didn't sound interested, and the conversation ended pretty quickly.

I found myself wondering, how could she not recognize that cry? How is it that I can be so in tune with my children and want to do anything I can to keep them safe and comforted, and have a mom who alternates between clueless and uncaring? How is it that she's motherly when she has an audience, but not when I need her? What happened? Why? How is it that she gets so caught up in how much these other people need her that she doesn't hear her own children when they do?

Why can't she be there for me, if only to say something soothing?

More importantly, how do I stop reaching out for the mom that just isn't going to be there?

Monday, August 18, 2008

Let's pretend aka WWYD?

Say you were a month out from major surgery, getting there but still sore and easily fatigued. And you had two broken bones in your foot.

Add in a 7 month old and a 3 1/2 year old.

Now, say your husband in an attempt to do something nice and fun for the family bought tickets to a Major League Baseball game.

The game is a one hour drive from your house, takes place two hours before your 3 year old's bedtime, and will be at least an hour and a half drive from your home.

And while he did get 4 seats, they are tiny and in the full sun.

Would you suck it up and go, hoping for the best but knowing at best you'll have a good time and be thoroughly exhausted at the end ? Or would you try to encourage him to go and take the three year old, and maybe the thirteen year old nephew and BIL?

Just wondering.

Friday, August 15, 2008


My nephew is going to be ok. By late last evening they'd been able to turn his oxygen down half way, he was breathing a bit better and they were hoping to have him completely off oxygen by late this afternoon. My SIL is hoping he'll be able to go home then,and I am too, though I know there's a possibility they'll want him for one more night. She did say he's now (lunchtime today) down to a third of the oxygen they were giving him, and he'll need to be off of it for 4 hours AND keep his saturation up before they let him go home.

We're grateful for all prayers and good thoughts, and hope he'll be home soon. They've decided it's something viral, that he must be more succeptible to this stuff, and they'll prescribe some medications and a nebulizer for home use for a while until he hopefully outgrows this tendency.

Several times I've started to write something about what happened last night, after the kids were asleep and my husband was off helping a friend. I tried to write how yesterday brought about memories and flashbacks more severe than the ones I'd been having already. I sat on the living room floor and cried, open mouthed and loud, until my eyes were puffy and I had the hiccups. Until my shoulders were heaving and the cats were looking at me like a creature from the lagoon.

I tried to write about how and why that meltdown happened, and my hopes that it was the beginning of getting over some of this. Nothing came out right, though.

Today I feel like a raw nerve, yet again. On the verge of tears from the moment I woke, I'm trying not to worry that means there's been a setback (I know realistically it's just an emotional hangover). I'm tired from little sleep, thanks especially to my own congested little man, and I must have overdone it yesterday because I am sore hysterectomy wise again. (post about that coming soon).

Thursday, August 14, 2008

We'd appreciate your prayers.

My nephew, just under 18 months old, is at the hospital right now. He's on oxygen, struggling to breathe, and we don't yet know if this is RSV, pneumonia or asthma.

Please pray for my nephew, for my SIL and her hubby. This is really scary stuff. He had a problem in June with breathing troubles while they were out of the country, and we'd hoped for no recurrence.

I'll update when I can.

Update from shortly before lunch - they've ruled out RSV, but still really aren't sure what's going on. He's still on oxygen, was going to be getting another dose of prednisone around lunchtime, and was sleeping but still breathing quite heavily.

Tuesday, August 12, 2008

Who says it can't be real AND fun?

When I first started this blog, I had plans for it to be fun. FUN!

Yeah, another thing that didn't happen quite as I planned in the last year. It's been honest, which I would like to think counts for something.

Recently I've been thinking about what I'd ultimately like my site to look like. I'm picturing a real website, banners, different pages, the whole deal. I'm picturing some fun aspects to the site, including reviews of some great books and awesome products and companies I've come across, and I'm hoping eventually I'll even be able to incorporate some contests with real life giveaways. I want to talk about food, marriage, kids and writing. Especially the writing.

I don't know how soon this will happen, but I'm working on it. There are many reasons, but a big one is all about bringing some of the fun back.

In the meantime, here's a bit of trivia about me. I love hitting a farmer's market with $20 and a canvas shopping bag, leaving it with more fresh produce than I can easily carry. It makes me feel as if I've conquered something and I love having enough veggies in the house I have to find excuses to put them in everything, including breakfast. (Made a fantastic zucchini, squash, red onion, egg scramble this weekend)

Now excuse me, I'm off to try to blanch 4000 green beans.

Monday, August 11, 2008

We don't HAVE to tell my mother.

We've had some behavior issues with my daughter recently. Nothing we can't get around, but she's cranky and prone to meltdowns. We've adjusted nap and bed times accordingly and that helped a bit, but there was still something nagging as well as the feeling she just wasn't getting enough rest.

I think we've found part of the answer.

My dear, sweet girl has been getting out of her bed at nap time, grabbing books off her shelves and spending the majority of her nap time looking at the books instead of sleeping. Further, she's figured out that if she turns on the extra nightlight in her room at night, I can't tell from outside the room she's done it and she can look at her books for a while at night too.

I was notorious for reading by nightlight, flashlight and even opening my bedroom door after my parents were asleep to read by the light that came down the hall from the bathroom nightlight. One of my most vivid childhood memories is of being told it was time for bed and asking permission to finish the chapter I was reading in a Nancy Drew mystery. Mom agreed and I kept reading until she finally stopped me....a full two chapters later, as I was a fast reader and just had to push that limit. She finally made me go to bed, but I'll bet you can guess the first thing I did when I woke the next morning. I finished that book before breakfast when I'd only borrowed it the afternoon before.

She comes by it naturally.

Tuesday, August 5, 2008

Not the End.

Yesterday, I wrote:

The magnet on my fridge declares for all to read:

"Everything will be okay in the end. If it's not okay, it's not the end."

I'm exhausted, frustrated, spent and at my limit in almost every regard. I have hope things will get better, but better seems so far away right now. I haven't had a full day of rest since my hysterectomy, despite that being what I'm supposed to do. There hasn't been a day, including the day of my surgery, I haven't done something directly contradictory to doctor's orders for recuperation.

It's not that I'm being stubborn or willfully ignoring them, I just don't know what else to do. "

Then my son woke, smiled, cooed and babbled while I changed his diaper. I decided to put in some music while I fed him, and sang louder when I discovered my singing was making him laugh. When he was done eating, we danced. Despite my pain, regardless of how tired I was, I decided I was not going to let another day go by without dancing with my son.

An hour after that dance, I found out my foot is broken in two places, contrary to what I'd been told before. It wasn't just a torn ligament, and the suspected damage to the tendons is in fact there too. (Did I even mention this, that I stepped down shortly before my surgery and hurt myself? I don't remember) I go back in a month, I'm still wearing the same lovely boot I've been wearing for weeks, and if all goes well I will not need surgery. The bones are already trying to knit back together.

Several hours after the dance, I learned the cuff from my surgery is healing fairly well but showing signs of potentially being infected. (Pain, extreme tenderness, etc). So, once again, I find myself on antibiotics. At least I'm finding this out NOW. It's quite possible with as long as everything else went on, this is just the last little bit of ick left over.

I started my day frustrated, in a lot of pain, looking for a break and didn't mean in my foot.

By the end of the day, though I didn't feel I'd crossed anything off of my to-do list, I felt like a success. I danced with my son. I laughed with my daughter when she came home from school until our stomachs hurt. I did the "made of state" puzzle with her three times in a row, and marveled at her memory of the states, who lives where, where she's been.

I booked a flight for our family to go see my dear friend, at the end of this month, and I am over the moon.

So, while it isn't over, I'm healing. It's about freaking time.

Monday, August 4, 2008

What a crock.

Moved Heaven, Earth and way more weight than I was supposed to in order to get to my post-op appt only to find out my surgeon's nurse had cancelled my appointment. The receptionist didn't think I was supposed to be there, then saw it had been cancelled. They called the nurse up and she must have been having a bad day, as she acted as if I was an idiot for not knowing the surgeon schedules postops for a month after on hysterectomies.

I suspect this got messed up when they changed me from a laparoscopy to hysterectomy, but regardless of the reason I put a lot of effort into getting there and now I'm frustrated and in pain.

Oh, and having to wait until August 25th to get the rest of my answers.

I'll be back, after these short messages.

This afternoon I'll meet with my surgeon for my post-operative visit. He'll go over the details of the pathology, the pictures of the parts I can no longer call my own, go over what his nurse told me and those details he wanted to discuss with me personally.

I've already heard the word benign, several times. Gratitude is too small a word for hearing that term, but I didn't expect malignancy to be a worry. Now I just need the rest of the story.

It is my greatest hope this is the beginning of a new chapter, a return to the old normal....though I do not think I could have possibly come through this year unchanged. I just hope when the dust settles, the changes are mostly for the better.