Only afraid in the dark

2016 is going to be the year that makes me tough.

Or maybe tough isn’t the right word. Let’s try ‘resilient.’ It sounds a little more like there’s a light at the end of the tunnel. Which theoretically there is. Remains to be seen though.

I keep trying to write about this thing we’re in, whatever it is. Phase. All of motherhood is one phase after another. And in their own way, they’re all hard. This one is, by far, the hardest. At least as far as I can remember. Sleep deprivation makes all things fuzzy and, to some extent, rose colored.

Anyway, back to the topic at hand… Oliver is sick, again. I’ve long since lost track of how many times. It started in September, I think, right at the beginning of flu season. Oliver scared the crap out of me by waking me up with a fever of nearly 105 degrees. Every time I tried to give him medicine, he threw it up, so we headed off to the ER at 3-something in the morning. They sat with us while we rode out the fever, and finally got some medicine in him, and then we were sent home, exhausted.

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A couple of weeks later, it happened again. We had just been to his doctor so we knew he had an ear infection, so we were ‘prepared’ with antibiotics and fever reducer. But again he woke up at 2am burning up. He was still a couple of hours away from being able to get another dose of his Tylenol (I didn’t know I could double up acetaminophen and ibuprofen yet.) So when he was already running a temperature over 104, we went back to the ER. They tried to give him medicine, which he promptly threw up like usual. They did a chest x-ray, a urinalysis, monitored his blood oxygen, all looking for what could be causing his crazy fever, because, according to the doctors who examined him, his ears didn’t even look that bad.

Finally the fever broke again, and they were just about to send us home, but they wanted to check his pulse/ox one more time, and it was low. So we were transferred to a pediatric hospital and admitted. It was an exhausting whirlwind of dehydration, several hours of trying to just get a damn IV started, a mega-dose of antibiotics, no clear diagnosis, and eventually going home. The only good thing I can say about this episode is that the hospital staff was amazing, and now we were finally armed with the tools to combat his high fevers from home.

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He continued to get sick though, every week or two. After the third (?) time since his hospital stay, I sat down with his doctor and said we need some answers. We agreed to look into allergy and immunology testing, and he gave us the name of a fantastic specialist. We were seen within a week, and again, I was super impressed with the level of care we received. The doctor heard everything I had to say, and actually told me I had done well and my instincts and experience were spot on. So now we knew what we were up against, finally. Officially: Transient Hypogammaglobulinemia of Infancy. Basically the immune system he was supposed to start developing between 6-12 months old is lagging behind. They think he will catch up and be ‘normal’ at some point (usually by 3 years old), but he will have to undergo regular testing to see what progress he’s making. And, his situation is further complicated by food and environmental allergies. And… AND… There’s no treatment, unless he were to not outgrow the condition.

Here is where we wait for that light at the end of the tunnel. But we’re not there yet.

Basically we do everything we can to protect him (including cancelling the trip back to Indiana for Oliver and me [even though that was kind of a bust because Brandon and Nora came back with colds, and he got sick anyway]), we almost never go out except for our weekly grocery runs, and even then I sanitize every surface within a foot of him and make him wear mittens the whole time.  And still he gets sick.

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Not one night goes by that I don’t reach out in the dark to feel his forehead.

I know in my head what the doctors say: that some day this will all be a distant memory. But my heart is tired. A sick baby burning up with fever is pitiful. He still scares me sometimes in the night, a couple of hours before he’s supposed to need medicine, too warm.  The rest of the time, I can be brave and roll with whatever his little body throws at us. In the dark though, you never know.

164

That’s what the scale said a couple of days ago when I last stepped on it.

I love it.

It’s only about 15 more pounds than my lowest weight over the past decade or so. That was just before my wedding, of course.

It’s about 35 pounds less than I weighed a week after Oliver was born. And less than 10 pounds more than my pre-pregnancy weight.

It’s just under the line of obese to overweight. (If you’re into that BMI stuff.)

Most importantly, it’s progress.

164 is self love. It’s hard work and finding balance. It’s breastfeeding and finding nutritious food that doesn’t make my son sick. It’s keeping up with a toddler and her constant desire to play soccer.

It’s patience. It’s remembering that with Nora I didn’t even start to lose the baby weight until well after her first birthday. It’s keeping on, finding a couple of minutes here and there, and moving my body with energy I’m not convinced I actually have sometimes.

It’s perfection. Or it might as well be, since it’s an ideal that no one ever achieves. I truly love where I’m at, and where I’ve been, and where I’m going.

A Gift

It’s been fully two months since I’ve taken on this ‘vegan-ish’ diet, so I’m probably due to give a status update.
The craziest thing so far is all the weight I’ve lost: 18 lbs in 8 weeks. I honestly don’t know how. I’ve been eating plenty, because I simply cannot function when I’m hungry. (It quickly escalates to “hangry”, especially when things are not going well with the child. Or the dog. Or even the cats, if I’m honest.) So yes I eat. I have bread, and pasta, and even the occasional cookie if its been one of those days. Plus I simply cannot jeopardize my milk supply by under-eating.

I actually am below my prepregnancy weight finally, less even than my wedding day, according to my records of obsessive calorie counting & dieting. I won’t kid you though, I’m still far squishier than I was that day since I was working out constantly then, and had seriously good muscle tone.
(Have you all seen this picture?)
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(What about this one?)
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(Crazy, huh!?)

Anyway, beyond weight, I feel good. Great even, when Nora lets me get a half decent night’s sleep. I don’t stress about food on a daily basis, and I don’t struggle with guilt over my less than perfect choices. The only tricky thing I’ve struggled with is eating out. Right now there’s a great vegan restaurant down the street from us, and a few other places that offer vegan options on the menu. But when we go to someone’s house or even another person’s choice of restaurant, I have had to snack before and/or after just to get a decent meal besides side salad. But I can deal with that, and it’s getting easier to remember to make a plan for those situations.

The next thing to do is have some blood work done, both for Nora and myself, to make sure we aren’t developing any nutrient deficiencies. I am really not worried though because I’m still taking prenatal vitamins for breastfeeding, and she’s become very agreeable about taking her gummy multivitamin too. But better safe than sorry.

So in the name of full disclosure, I did have a hamburger last week. I’d been feeling curious for a few days what it would taste like now, and it wasn’t good. Kinda gross even, but that’s pretty much what I expected. I felt kind of sad after, but not guilty, at least. I had the answer to my question and that has some value. I do sometimes miss the convenience of meat, and even the idea of the taste (at least the taste I remember). But I don’t really want to eat it. I’ve found a lot of peace and satisfaction these past couple of months, and no burger or steak or even bacon is worth trading in that gift.

You’ve come a long way, baby

Despite the title, this post is entirely about me, not Nora.

I ran into an old friend over the weekend. We’d lost touch a while ago, so I wasn’t planning on stopping to say ‘hello’ unless she noticed me back. But then suddenly Brandon was flagging her down and inviting her over to meet Nora and ‘catch up.’ After a few minutes of very awkward banter, we parted ways again. Brandon looked at me in a What Just Happened kind of way, and to answer his unspoken question, I said, “She seems to think we’re pretty lame now, huh?”

And that was it. Until I found myself Facestalking her late at night. Same drama, same problems. Nothing had changed for her.

‘Huh,’ I thought to myself. ‘I figured that would have gotten old by now.’ But maybe that’s just me.

Don’t get me wrong; I’ve made my share of mistakes over and over. But finally I realized I wanted more out of life, and even though I’m far from perfect, I take pretty good care of myself now. And as a bonus, I somehow managed to realize my dreams of being a wife and mother, too.

Nineteen year old me would be pretty damn proud. And she was a mess, and sinking farther each day. I still wanted these things, but it was easier to party and drink instead. Combined with worsening depression, breaking up with a guy I thought was ‘IT’, and then sleeping around far too much in hopes of putting him behind me… it’s really a wonder I was able to recover at all. And it was another couple years before I hit the proverbial ‘bottom’. But some tough love from my family, getting some real help, and then some utterly tender love from my husband, and here I am.

There’s a tattoo I’ve been wanting to get for a long time, but I keep putting it off until I get myself a little ‘better.’ It’s a passage from Hebrews that says, “… you have struggled with God and with man, and have overcome.” I had this mental picture of what my life would look like when I got to the ‘overcoming’ part.

But honestly, maybe I’m a bit hard on myself. Maybe this is it. Not perfection, by any means, but the other side of the hill. Or, in my case, that very dark valley.

 

Ok, maybe this post is a little bit about Nora, but only because she’s so dang cute!!

Sweating the small stuff

It’s no secret that I’m a bit of a worrier, mixed with a serious dash of perfectionism, a side effect of which is insomnia inducing mommy-guilt.

I’ve been caught up in a massive change-up of my routine (again) due to Nora’s new mobility (crawling, cruising, and crashing, oh my!) and those precious 20 minutes I had for two whole weeks to get in a workout have once again vanished.

It sucks.

I’m just not a dieting kind of girl. I’d rather eat foods I enjoy and then kick my own ass for a couple hours at the gym. It makes me feel strong. Being hungry makes me feel weak.

And cranky.

And like a bad mother.

I know I’m just in a rough headspace the past few days, still playing catch up from my time in Greenfield helping my sister’s family and now having some new concerns about Nora’s hips that will go unanswered for a couple more weeks until we get down to see her doctor again… I’m just a little stressed.

Unfortunately, 3 a.m. isn’t the best time to get resolution so I should probably try getting some sleep instead.

Part-timer

Tonight I finally allowed myself to shed a few more tears over Nora’s hip dysplasia situation. This time, however, they were good ones… tears of relief and joy, letting go of a little worry, and even a little misplaced guilt.

After a very restless night last night, we all got up early this morning to head down to Indy for Nora’s follow up to see 1) if the brace was working, and 2) for how much longer she would have to wear it. All of the research I had done told me that typically the brace is worn for 6 to 12 weeks and then at least part time for an additional 6 to 12 more weeks. And if the brace didn’t work, the next step would be surgery and a hard cast.

I had already mentally prepared myself (this time) to not be so shocked should we get the worst news, but I tried to put it out of my mind for a bit longer while we enjoyed a pleasant detour to have lunch with Tiffany, Calvin and the new bump that is rapidly growing. It was a lot of fun to watch the kids stealing glances with each other and the other restaurant patrons, and garnering lots of compliments on how adorable they were. Even though it was a brief visit, we left in good spirits and headed to the doctor’s office to see what would become Nora next.

Even though she  had been a little fussy when we were finishing lunch, by the time we got to Nora’s appointment she was in a good mood again. She thankfully stayed pretty happy through the whole x-ray process (a VAST improvement over last visit) and was still smiling and drooling away when the doctor came in. I had a pretty good feeling as we sat waiting because a nurse had brought in the pictures and her hips looked a lot better, to us at least. Her doctor was thrilled at her improvement too; in fact, when he came in he announced that she really didn’t even need the brace anymore! But, just to be cautious, he recommended we keep her in it for about 8 hours a day, and then we’ll follow up again in two more weeks. After that, he seems to think we’ll just be back on the ‘keep an eye on it’ track with visits every three months.

Holy moley!

The best news I was expecting to hear was that she’d be wearing the brace full time for another month! Obviously we’re overjoyed, even though we’re still not in the clear just yet. I’m so grateful to her pediatrician for catching the problem so early and also for the specialist for giving her the right treatment and saving her so much pain and suffering down the road!

Resilient

The past couple of days have been really trying for me as a mother. But even as my heart aches knowing I can’t “fix” my baby, it sings with joy to see her tears of frustration quickly transformed back into her usual babbles and coos of amusement and contentment.

A couple of months ago we learned that our sweet little girl had a very slight case of developmental dysplasia of the hip (DDH), but our first visit with the specialist was actually reassuring since he told us that many of these cases simply go away on their own; we’d just have to come back for evaluation every three months.

So now after Nora’s three-month ‘birthday’ we trekked back down to Indianapolis to hopefully hear some good news. In fact, we did hear a tiny bit: her right hip, which was originally the cause of concern, was much improved. But her left hip had gotten worse, so the doctor decided that it was time for a brace.

I was utterly crushed. On top of all of this Nora has been crying her eyes out since the x-ray when we first arrived, and now they were strapping her into this contraption that looked uncomfortable and awkward. I tried to hold her to nurse and could only manage to get her latched while sitting upright on my lap, and still she was pretty much inconsolable. We did get to take the brace back off to fit her in her car seat, and as we got on the road to go home, she finally passed out. I sat in the back seat and wept most of the way home.

Even though I knew better, I wondered if somehow I could have prevented this, or if I had done something to hurt her. Unfortunately her condition is usually congenital, genetics are a ‘factor’, and the highest risk is in first-born females. It can also be caused by tightly swaddling the hips, but we’ve been practicing ‘safe swaddling’ ever since we learned of the risk. So unfair as it seems, there really was nothing we could have done better or differently.

When we finally got home that evening, we were all completely worn out.  After a quick diaper change, we strapped her back in the brace and tried to sort out how we were going to get through the night and the next day. With a lot of trial & error, we finally got into a comfortable nursing position, and many tears later she fell asleep again.

Normally she only wakes once each night, but between the discomfort in her belly (crying creates lots of air bubbles) and her inability to move with the brace, we were up every hour and a half to two hours. By this morning I was so utterly exhausted, I caved. I took off the brace, and we snuggled down for a three-hour stretch. And when we woke up, she was able to wiggle and poop before we dressed & re-braced for the day.

Each passing hour seemed like a struggle at first, just trying to sort out the most basic elements of our routine: nursing, burping, napping, and diapering. She dozed off and on, at first waking up screaming in apparent agony, but slowly realizing that all her needs were being met and this brace is the new normal.

I’m still reserving judgement on saying she’s completely adjusted until we get through tonight, but she really has brought back hope that we’ll all be able to get through this trying time together. Her strength and resilience are a soothing balm for this mother’s heart.