Soul Gardening

Laryngitis, 42 Bites and Failure To Thrive

I'm not done yet. I know it seems like it, but I'm not.

I've lost my voice for awhile now. I haven't had time or energy or inspiration to write anything and I'm not sure how long it will be before I'm able to do so again on a regular basis but I wanted to get some things down during this time so I don't forget.

Things have been good at times, blissfully incredibly wonderful. We've done a lot of incredible things in the last few months and have had visits from friends and family. But life has also been difficult and draining and frightening.

I'm going to borrow text from an e-mail I sent to some wonderful blog friends who have inquired in the last month or two because I literally do not have the energy or the time to come up with something new but I want to get this all down so I don't forget. Because I figure someday soon, things are going to be better and when they are I want to look back on this time and see how far I've come.

Myles' first birthday was April 28th and I cannot believe how fast this year has gone. He's walking. Oh my GOD. And he's sweet and and smart and funny and happy (sometimes) but he's also difficult and emotional and high maintenance (I think the politically correct term is spirited and man is he ever) and he's been diagnosed with an eating/speech delay that we are trying very hard to correct.

I don't get much time to myself when Myles is awake because he pretty much relentlessly demands every second of my attention. And while we have finally got him sleeping mostly through the night (he only wakes up once or twice and I don't feed him anymore), he's not much of a napper which leaves me very little time during the day to get anything done. I rarely get to check my e-mail anymore and blogging is a luxury.

There are times when I have to put Myles in his crib and let him cry (okay, scream) just so I can get a shower or brush my teeth. I didn't think things would still be this intense at one year and I know many of you seasoned parents will chuckle here at my naivete.

The eating delay - at 12 months, Myles still cannot eat/chew/swallow anything that has any kind of texture. This means that we are still feeding him stage 2 (pureed) baby food and it has been a major struggle to get him to eat and gain weight. Two weeks ago at his one year check up he weighed 15 pounds 13 ounces.

The thickest food that he can manage is the stage 2 stuff. If we give him anything with chunks in it, he swallows the more liquidy part and spits out the chunks. He doesn't seem to have an issue with putting food or other things in his mouth, but he just never swallows any of it. On the bright side, I don't have to be as vigilant about him eating the cat food because he won't swallow it anyway.

Thus far he has been tested for Graves' disease and thyrotoxicosis (both negative) and a blood screen has been ordered for Cystic Fibrosis, Leukemia and Celiac disease because he hasn't gained any weight in three months. Yesterday we did a complete upper GI radiology series just to rule out any physical malformations or abnormalities.

Right around the time of my last post I was in the middle of trying to get an evaluation through our state's Early Steps (early intervention) program. Though it's taken a few months and several rounds of beurocratic bullshit, he was finally seen by a team of developmental specialists a few weeks ago. This is HUGE for us because it means we don't have to pay out of pocket for therapy which we are doing for all of Myles' other treatment and testing because our private health insurance has excluded GI conditions as pre-existing due to a reflux diagnosis he got as an infant.

As I suspected, he has no major developmental delays other than the oral motor problem that is causing him to gag at any kind of textured food. This will probably also mean a slight speech delay. At this point, we've had one session with an occupational therapist who has given us some exercises to help strengthen his oral muscles and desensitize his gag reflex.

I'm pretty sure there is something physiological going on that may be causing the hypersensitive gag reflex but that it is not the only problem. After we get the radiology results, we'll be heading back for a radiology swallow test that will show exactly how the mechanics of his mouth works as he eats and drinks and I am hoping more than I can say that this will tell us what is wrong.

I'm not going to sugar coat it. All of this has been so hard for me. I know in the grand scheme of things we are incredibly lucky that Myles' problem is not worse. In the last few weeks, I have seen some kids Myles' age and younger in much worse situations. But the truth is, trying to get Myles to just eat and to eat enough to sustain his weight is a full time job on top of the fact that he's an extremely high energy and emotional kid and I end each day exhausted and frazzled.

I'm still battling major hormonal issues. I quit taking the anti-depressant I was on two months ago because it didn't really seem to be helping with the negative stuff and it basically dulled me out so much I felt like I wasn't experiencing any emotions at all, happy or sad. I went to see my doctor for a new prescription (Lexapro -  anyone know anything about it? I've never tried this class of drugs that works on dopamine rather than seratonin but I'll try anything at this point.) that I can start when Myles is weaned.

I've decided against my better judgment to wean him now because I need this medication desperately and additionally we need to know exactly how many calories Myles is consuming each day (as if I didn't already aside from the breastmilk).  I'm struggling to get enough calories into him with the pureed food. I've been mixing in powdered formula and oatmeal with everything he eats and his doctor has also recommended that we start putting olive oil in his food. Doesn't sound very appetizing to me, but I'll try anything.

Jeff is traveling a lot for work and I struggle to keep my head above water when he's gone. There are many days that I feel like a terrible mother for getting frustrated with Myles when he won't eat or sleep. I don't want mealtime to become a battleground, but every feeding seems like an insurmountable obstacle and I worry about his nutrition/weight gain almost constantly.

I feel like I'm admitting defeat because this isn't working for me. Sometimes I hate being a mother because it just all seems so fucking hard and I know it shouldn't be and I feel like Myles is missing out on a lot because we waste so much time trying to get him to do the most basic things like eat and sleep. I resent that I don't have time for myself and that I'm not taking care of myself the way I should and I feel guilty for resenting anything that has to do with Myles when none of this is his fault.

I wish I had the time and energy to get back into writing on a more regular basis. It would really do me good right now, but I just can't, not only because of time constraints but also because I don't know what to say anymore. I don't feel like I have much of anything positive to write about and the negative stuff is just swirling around in my head in an incoherent jumble.

I hate to sound like such a downer. Aside from the feeding and weight issues, things are pretty good, but unfortunately the eating thing pretty much dominates our lives. And I know I need to take care of myself because my energy and patience levels are nowhere near where they need to be to handle all of this and that really just scratches the surface of how all of our lives have been affected.

It simply shouldn't be this hard, but it is. And my beautiful boy deserves a mom who can handle things much better than I have been. And I want to find my voice again. And I want things to be okay, for him and for me and for Jeff.

Mostly I want to find my voice again.

42 Bites referred to in the title - the exact amount of spoonfuls it takes to get 4 ounces of pureed baby food (mixed with olive oil, oatmeal and powdered formula) into my son in any given meal. Sometimes on rare occasions it takes ten minutes. This morning it took an hour an a half.

***Failure to Thrive - the diagnosis Myles has been given as a result of being under 16 pounds at 12 months when according to the doctors based on his height he should be closer to 22. That's 35% or more underweight for anyone keeping track.

Minutes

Here's a question I've asked myself pretty frequently: "Does it reflect badly on my mothering skills that my child's favorite toys are a champagne cork and a feathery cat toy on a stick?" The conclusion that I've reached is that if there is something out there that keeps Myles occupied and quiet for five minutes that won't stab, burn or otherwise maim him, by god, he can have it.

And here's a mantra that I've been repeating over and over lately: "Motherhood is an endurance sport." It really feels like I'm at mile 8 of a marathon every single day. I suppose all of this will get a lot easier when the PPD eases up (any day now, seriously, universe I've had enough). But there are some things that will be the same, PPD or not.

Myles is a pretty high maintenance kid, requiring my almost undivided attention when he's awake. Maybe all boys are like this, or all ten month olds for that matter, but he's only content to sit and play by himself for a few minutes at a time, barely long enough for me to run to the bathroom or grab something to eat. And since he's pulling up and cruising on anything he can and we have ceramic tile floors, the solution is either to get him a helmet, or keep a constant eye on him.

For the record, I'm seriously considering the helmet, at least for him to wear at home. I don't want to humiliate the kid, just keep him from giving himself daily concussions. So. Damn. Rambunctious.

The sleep situation has improved ever so slightly since my last post. The longest stretch Myles has ever slept at night is seven hours. That only happens once in a blue moon though and he's still waking up at least twice a night. Last night he was up twice, once from 3-4am.

So I'm still having a hard time coping, especially when Jeff is out of town which he has been all week. As for daily naps, there is no regular schedule - usually 20-40 minutes in the morning is the most I can count on and he's been forgoing afternoon naps altogether lately.

Aaannndddd. I know someone mentioned in comments on my last post that it seems I'm always talking about Myles' size. So, if you don't want to hear more about my tiny boy and what we've been doing about it, you might skip ahead a few paragraphs. At his nine month check up a few weeks ago, he was 15 pounds 3 ounces, literally not even on the growth charts. At 27 1/2 inches he's still only 22nd percentile for height.

There's nothing I can do about his height, and I don't really care. He's probably not going to be tall. No big deal. But we have to do something about his weight and the even bigger problem of his issues around eating.

He's being evaluated by an early intervention specialist for some possible oral motor delays. I don't think he's got a serious problem, but at ten months I know he should be able to swallow chunks of food. He doesn't. He can't swallow anything that isn't a thick puree. He gags and spits out anything with any texture. This has been an ongoing issue and it's nearly impossible for me to get enough calories into him with purees and breastfeeding alone.

Luckily the problem seems to be confined to eating. His verbal skills seem to be on track and if they're not hopefully any therapy he gets for the eating issue would correct speech as well. Additionally, he doesn't have motor skills problems. He picks up the cereal and vegetables and teething toast and puts them in his mouth. He even swishes them around, but eventually they all get spit back out. It seems like he just needs some help in learning how to get the food to the back of his mouth and swallowing it.

In the meantime I've been upping his caloric intake and gradually getting him used to thicker purees by mixing all of his food with powdered formula and oatmeal cereal. It seems to be working already. And even if turns out that the evaluation shows a slight delay that will correct itself without therapy, then at least I'll know what to do.

All of this worry around what and how much Myles eats and trying to be patient with him while simultaneously fighting with him to get him to eat solids three times a day has been an ongoing thing and it's utterly exhausting

I just keep thinking that sooner or later I'll have more time for myself, that I'll have more energy and won't just want to collapse on the couch and watch election coverage (Which by the way is fascinating. I'm more into this election than any in my lifetime.) whenever Myles goes down for a nap or to bed at night.    

On the other hand, this kid is beautiful and funny (so funny) and sweet and high energy and smart and filled with an incredible personality that I'm learning more and more about every day. Yes, he makes me work for it, harder than I've worked for anything in quite some time. He's strong willed and stubborn and easily frustrated and if he's not happy about something everyone knows it.

But the reward is that every day, with increasing frequency we have these perfect moments, these amazing encounters in which we completely understand one another - like when Myles initiates a game of monkey see-monkey do or another game I call "name your facial features" in which he touches my eyes, nose and mouth and I touch his, telling him what they're called.

Those are the times when I realize with perfect clarity that in some respects things will get easier soon and in others they are about to get so much more challenging. Because he's going to be walking before long, god help us all. But he's also going to be talking in earnest and hopefully using some of the signs we've been teaching him. And man, it's going to be nice to be able to communicate with him.

So, I'm realizing that's the way motherhood goes. You reach the top of what you thought was a really high mountain only to see an even steeper one ahead of you. But if you're lucky you get to enjoy the climb and you can make a game out of getting to the bottom by rolling over over and over through the grass.

Who doesn't love that?

Glad

"Welcome to the spinning world, the people sang...We are so glad you've come."

It's usually at this line in Debra Frasier's book that I start crying every time I read it. The beautiful story reminds all of us how magical the world is, how connected each of us are to everything in it before we are even here. It's something I truly believe.

I think it's a product of the medicine that I'm taking as well as the fact that we've hit six and a half months*** and Myles has suddenly exploded developmentally, but things have suddenly gotten so much easier. Don't get me wrong, we still have our moments, several a day in fact. Right now though? I am enjoying motherhood more than I ever knew I would.

I can't wait to see Myles first thing in the morning when he's so happy to see me that he wriggles so hard his whole body flips off of the mattress and his smile lights up his beautiful face. He's suddenly become incredibly interested in discovering every aspect of his environment. You can see the wheels turning in his head when you watch him looking around at everything all the time.

He's so much more interactive now. He runs everywhere in his walker chasing the cats or following me. Sometimes we play Hide and Seek. I'll call him then go around the corner. Then Myles runs full tilt until he gets to where I am and squeals with laughter every single time. Everything is new to him and he's having so much fun experiencing all of it.

We also play a game I like to call "Take Things Out of the Toy Box" (TM). In this game I take a small bin and fill it up with various books, rattles and toys. Myles sits in front of the bin and takes each toy out, inspects it then puts it aside until the bin is empty. Then we start all over again. The best part about the game is that it keeps him occupied for ten minutes at a time.

He's getting very close to scooting or crawling and always lurches forward onto his hands and knees when he's sitting up. Sometimes I'll place an item just out of his reach to entice him (usually a bottle of beer or my cell phone), but he just doesn't quite know what to do next. He'll move his arms, but only one foot. So he ends up spinning around like a propeller. It's hilarious and I think he loves it as much as I do.

I hope this post doesn't sound sound like me being all "look what my kid can do". I am just so thrilled and amazed and happy that I'm finally here in this place where I can find so much joy in the smallest aspects of being a mother.

I don't have the time I used to, to write, or read blogs (I promise to catch up with everyone and return all the e-mails in my inbox soon.), or clean the house or shower some days, especially when Jeff is gone. But none of that seems as important as soaking in every little moment, breathing in deeply and knowing that I am a part of something miraculous and each day will bring more wonder, more joy, more love, more laughter. And it all means so much more to me because I couldn't have imagined feeling this way two months ago.

Yeah. This is what it's all about.

***This reminds me, can anyone tell me at what point I'm supposed to stop counting the actual weeks for Myles' age and start using the actual date/month to calculate? Is it just me that's confused by this?  

The Shape Of A Muffin And Some Great Shoes

The other day, I mentioned I have a slight muffin-top in my pre-pregnancy jeans and DD challenged me to show it. I think we've already established there's not much I won't share for entertainment value.

So, behold my muffin. It's more noticeable from the side or when you're looking down at it, which, let's face it, most people are since I'm only 5'4". Also when I  bend, sit down or slump over, it's really not pretty. But I'm not showing you that. I have some pride.

Here it is in my "uniform" of shelf tank top. I usually layer two of them which has the added benefit of making breastfeeding virtually seamless while holding the belly flab in check and camouflaging any rolls with gathers in the fabric. 

Can you see why I love these jeans? They hide a lot.

And just to be clear, I'm not complaining. I'm thrilled that these jeans fit comfortably and a little bit of belly flab certainly won't stop me from wearing them. If that was the case, I wouldn't be able to wear any of my clothes.

In other news, I just posted a review of the cutest baby shoes on earth

at the Full Mommy complete with a contest to win two free pairs and a discount offer.

Seriously, these shoes are adorable.

If you're in the market for a great baby shower or Christmas gift go check them out.

Milk, It's What's For Dinner

I call this the "Kiss My Ass Facebook and Bill Maher" series.

Myles says: "Breastfeeding Sucks".

 

Coincidence My Ass

"Experts disagree about whether teething actually causes symptoms — like fussiness, diarrhea, and fever — or whether these common symptoms are not related to teething at all and just coincidentally appear at the same time as emerging teeth."...

Clearly these "experts" have never had a teething child. Poor Myles. Can anyone tell me how long it takes for teeth to come in once you can see them under the gums?

Please don't say a long time. And any ideas or advice on how to soothe teething symptoms without using pain medication or numbing agents would be greatly appreciated.  

Big

File this under things I know with my head, but am having trouble convincing my heart.

Myles is small. There's no getting around it. At birth, he was 5 pounds, 15 ounces and 19 inches long. Today, 18 weeks later, he's 12 pounds 8 ounces and 24 3/4 inches. That's the 6th percentile for weight and the 35th for height. I don't know why, but it feels like some kind of failure on my part.

Every time I see a younger baby that is bigger than Myles, which is almost a daily occurrence, (mostly because out of morbid curiosity, I ask every mom I see whose baby is bigger than Myles how old they are) it hits me. I know I shouldn't compare him. I know I'm setting myself up. I swear, I don't do it (the comparison thing) with any other aspects of his development or appearance.

I could truly care less if his motor skills, or physical development or verbal ability is on par with anyone else's baby and I'm not the kind of person who is ever going to go on and on about how advanced my child is because I know none of that really matters. (Although I will say he's definitely hung like a six month old.) But for some reason, every time someone comments on how tiny he is, it stabs me right in the heart. 

Neither Jeff nor I are very big people so Myles was already behind the eight ball, genetically speaking. And I'm not starving the kid. He eats six to eight times a day, whenever he's hungry. In fact, I try to make him eat more because I'm concerned he's not getting enough, but he always seems full after a meal.

He's built like me, sort of wiry and compact. He's never going to be a big roly-poly baby with three chins and chunky thighs. I know that, but it still bothers me to think that either through genetics or the nutrition that I'm providing from my body to his, he's being limited in some way.

I know he's fine. I know that I should stop driving myself crazy trying to figure out how much he's eating and how much he's supposed to be eating and how much he's grown in the last week.

I know I should never have even asked about the stupid percentiles in the first place. And I can promise you, I'll never do it again, because therein lies madness. Chalk it up to a lesson learned in motherhood that I'll definitely pass on to anyone who asks.

But I'm curious. Is it just me, or do all mothers have that one thing (or perhaps more than one thing) that they obsess about? Anyone care to make me feel better by sharing their secret or not so secret worries? 

Push/Pull

He still doesn't sleep or nap as much as he should. He prefers being carried or riding in the sling to being put down by himself. Sometimes he drives me batshit crazy.

But can you see why I'm having trouble leaving him?

 

Third Nipple - A Breastfeeding Tale

When Myles was born, at 5 pounds 15 ounces, he initially had difficulty with his sucking and swallowing reflexes. (Definitely not a trait he got from me. Har har.)

Seriously though, it was rough going for the first few days. He couldn't latch on and didn't eat at all for the first 36 hours. We finally decided that although breastfeeding was the end goal, we needed to get some nutrients into him until he was strong enough to breastfeed.

We fed him round the clock with a syringe and we were measuring his formula input in milliliters rather than ounces. In the meantime, I was pumping every two hours and getting only a few drops of colostrum, which we would suck into the syringe for him. 

After a day of syringe feeding, we were able to get him on a bottle nipple, but he still had latch issues, thrusting his tongue up to the roof of his mouth so it was very difficult to get the bottle in. Still desperately wanting him to breastfeed, I would try at every feeding with no success. It was so hard to see him struggling to eat. We would end up with him screaming and me in tears every time I put him anywhere near my breast.

After two days on formula, mixed with the smallest amount of breast milk, the constant pumping began to pay off and my milk finally came in. We were able to transition to feeding him exclusively breast milk, albeit from a bottle, by our second day at home.

Although the formula was a godsend, I felt better about the fact that he was  drinking breast milk. But pumping and bottle feeding was extremely time consuming and ultimately we still needed to get him on the breast.

When Myles was eight days old, I went to see a lactation consultant who got him latched on within a few minutes using a nipple shield. That thing was a godsend and although I knew in the back of my mind we probably wouldn't be able to use it forever, I was just thrilled to finally have him breastfeeding.

Things went on like that for the next month. I had no problem at all with the nipple shield, although it did make breastfeeding in public a little more difficult. I attended a La Leche League meeting at five weeks and asked the group leader the best way to get Myles off the nipple shield and her (crappy) advice was to just stop using it and if he got hungry enough he would latch on without it.

Yeah, not so much. I was already worried that my baby was small and possibly not eating enough, so the last thing I planned to do was to deprive him of the only way he knew how to eat.  I figured when he got older and stronger, the latch issue would just work itself out.

And so we went on for the next three months. Every now and then I'd try to feed him without the shield. Sometimes it would work and sometimes it wouldn't. In the meantime, I still pumped a few times a day for milk bank donation and so that Jeff could feed Myles a bottle for the 11pm feeding and I could get to bed earlier. Things were working pretty well.

Last week, I decided to make a real effort to try to ditch the nipple shield again. I tried feeding him without it and like magic, he latched immediately. No problems at all. Who-hoo! The next feeding went just as well. And just like that, after four months, we were done with the nipple shield and all was right with the world.

Or so I thought.

It seems now that Myles has enjoyed the real deal, with no silicone between him and the boob, he's decided that he won't settle for anything less and he won't take a bottle at all anymore. So it's all me, all the time, which is fine for the most part.

He'll likely be starting solids in eight weeks or so and we'll gradually start lessening his number of feedings. But in the meantime, I'm doing every feeding. He's never been much of a napper and Myles has recently decided that sleeping through the night is for chumps so we're back to a middle of the night feeding as well.

So, I'm sleepwalking through a big part of my day until we get back on a better sleep schedule. Yesterday, I was feeding Myles, sans nipple shield. I was tired and trying to watch the news at the same time (so I can get even more worried that all his toys are laden with lead paint) and I wasn't paying close attention.

After a few minutes, I realized he had been sucking an inch or so higher than my nipple. He hadn't been fussing or complaining and I was so out of it, I didn't even notice. Now, I have this huge nipple hickey on my left breast.

It's still there today, looking for all the world like a third nipple. That's a kind of nipple confusion I never anticipated.    

Pins And Needles - A Follow Up

Update - Here is the link to the audio of the Revolution Health conference call on vaccination. There is some really great information here, covering many of the issues raised in my last post and your comments.

*****************************************************************************

I wanted to thank everyone who participated in the discussion on my last post about childhood immunization. Your insightful and respectful comments on what can be a divisive issue have given me food for thought.

One thing I wanted to mention, since I'm breastfeeding, I'm passing on immunities to Myles for all those things that I've been vaccinated for as well as those illnesses I've already had. Because of this, I feel we have a little more time to make decisions regarding timing of vaccinations.

Last night, I was able to participate in a conference call sponsored by Revolution Health in which many of the issues raised in my post and in your comments were discussed. As soon as it's available I'll be posting a link to the audio of the call and an online transcript.

We are on our way to the airport, headed to Atlanta to see friends and family. Myles will be joining Sage as the newest member of the mile-high nursing club. And we have tickets to see Rufus Wainwright at one of our favorite small venues in Atlanta.

Have a great weekend!