Master, the Tempest is Raging

Master, the tempest is raging,

The billows are tossing high!

The sky is o'ershadowed with blackness,

No shelter nor help is nigh.

After Noah's diagnosis with c. difficile a week and a half ago, we've tried three seperate medications. The first one, Flagyll, made him horribly sick, and he wasn't able to hold anything down all day. My poor baby laid on the couch almost all day with me, refusing to engage in even the most gentle play, refusing even Pedialyte and popsicles. I'd never seen him like that before, and before the day was out, I knew he could not continue on this medication. So our doctor called in another prescription, one that is not commonly successful with treating c. diff but much gentler on the body. The vomiting stopped, but the new medication still affected his appetite enough that he showed no interest in eating all his familiar, favorite foods. The only food we could consistently get him to eat was Cheerios, and the only drink he would readily accept was water. Further, the medication did not produce any results, even after a week of trying it.

When our pediatrician heard my report about his appetite, she insisted that we get him eating some higher-calorie foods, worried that the lack of nutrition would impede his recovery. I tried pushing him to eat some of his favorite fatty foods--avacados, chocolate rice milk mixed with coconut cream, and wheat bread spread with sunbutter. Whenever we presented these foods to him, he would mostly pick a little at them and then reject them completely. All our coaxing and all the healthy options we tried to present him with only won out about half of the time. He won the other half, and he got his Cheerios.

We got his medication switched again, and this time we started seeing results almost instantly. His appetite improved, though he was still extremely picky and resistant to the higher-calorie foods. Our pediatrician became worried enough that she decided to call the gastroenterologist himself, and they decided that we should try Elecare and Neocate, two formulas designed for children who have suffered severe trauma to their digestive system and are unable to process food correctly. On the plus side, these drinks are high-calorie and easy to digest. On the downside, they taste awful, despite the manufacturer's effort to make them more palatable with flavors such as tropical and chocolate.

So I went to the doctor's office on Tuesday to pick up a bunch of samples of this formula. While I was there, they basically told me that I needed to get Noah to drink 20 ounces of this formula daily, or else we would need to put him on a feeding tube. They gave us a rough deadline of two days to meet this goal. Suddenly, the main issues at stake changed from Noah's battle with c. difficile to Noah's failure to eat enough and gain weight.

I left their office with a heavy, worried heart. Noah doesn't even drink that much water--his current beverage of choice--on a daily basis. And lately he's become more and more resistant to accepting new drinks, even if he likes the flavor well enough. How was I supposed to get him to drink 20 ounces of some nasty, chalky formula?

However, the thought of putting him on a feeding tube scared me to death. So we started giving it our best shot. I offered him the drinks every chance I got, and always kept his cup close at hand. We tried buying new cups, hoping that the novelty would help him accept the drink. We even tried mixing the formula in a very thick, concentrated amount and giving it to him via syringe. Noah met each new effort with the most stubborn resistance. At best, he would take sips of the beverage here and there, and then lose interest completely. He began resisting the syringe violently, even when it was the new medicine, which he happened to like. Meanwhile, our two days were flying out from under us.



Carest Thou not that we perish?

How canst Thou lie asleep

When each moment so madly is threat'ning

A grave in the angry deep?

Tyler took the day off work yesterday to give me a break, and I enjoyed a quiet afternoon in Salt Lake shopping and trying not to think about the imminence of Noah having a feeding tube. I'd hoped that Tyler could do a better job of convincing Noah to drink while I was away, but when I came home, I found that nothing had improved.

I won't try describing the emotional journey I went through last night. Putting your child on a feeding tube is far from the end of the world, but when you start thinking about all the implications--the discomfort it causes the child, the daunting task of learning to put it in and take it out, weaning the child off of it when it is no longer needed--it becomes a very scary thing. The more Tyler and I thought about the prospect, the more we noticed the gaps in our doctors' reasoning behind the feeding tube, and the more we realized that they might not have enough information to make this decision correctly. We knew that before we put Noah on a feeding tube, we needed to sit down with our doctors and have them explain all their reasons for thinking it is necessary, and we needed to be convinced that they were right. If they couldn't convince us, then we would seek another doctor's opinion. I decided that if Noah hadn't magically decided to love drinking the stuff by tomorrow afternoon, I would call and set an appointment to discuss our questions with our doctor.

As I tried to go to sleep, exhausted from a lot of crying and worrying, I thought about the formula, thought about all our prayers and efforts to get him to drink it. I said in my mind to Heavenly Father, "There is nothing more that I can do. I've tried everything I can think of. We need you to take over." 

Master, with anguish of spirit

I bow in my grief today.

The depths of my sad heart are troubled.

Oh, waken and save, I pray!

Torrents of sin and of anguish

Sweep o'er my sinking soul.

And I perish! I perish! dear Master.

Oh, hasten and take control!

This morning, before I even got out of bed, I knew that there was one more possibility. I remembered that there used to be another drink that Noah would chug down as eagerly as if it were water, something I hadn't made in a long time. Before Noah got sick with c. difficile, I used to make him "green drinks," smoothies made out of spinach leaves, bananas, juice concentrate, ice, and water. I stopped because I was worried that the juice concentrate would make the diarrhea worse. However, I thought that maybe if I tried mixing up the formula in the style of a green smoothie, he might accept it more readily.

We didn't have spinach, but we had the rest of the ingredients. I dumped a bunch of formula in the blender cup with a banana and lots of juice concentrate. I whizzed it up and poured it in Noah's cup at breakfast. He didn't touch it, didn't show any interest in trying it whatsoever. I felt my hope slowly evaporating as Tyler left for work.

As soon as the door shut behind him, Noah realized that the cup was there. He picked it up and drank. He drank for a long time. He put it down, and then picked it up to drink some more. I could see that several ounces were gone from his cup, gone within a matter of seconds. I could hardly believe my eyes--yesterday, convincing Noah to drink that much would take an entire afternoon.

His interest in the drink, though sporadic, was enough that he had finished the entire cup by noon. I quickly whizzed up another batch and offered it to him before putting him down for his nap. This brings us to the current moment--Noah is still napping, and I have a newfound hope. He's already had a quarter of the formula that he needs for today, according to the doctor's recommendations. Again, this is much, much more than every bit of formula that he has drunk willingly over the last two days put together. I feel optimistic that we can get him to drink at least two more cupfuls, which will put us close to that 20 ounce mark.

Even if that doesn't happen, and even if our doctors are still pushing for a feeding tube, I feel much better about things now. I feel like my idea about the green smoothie was a gift from heaven, a merciful gift that is the start of everything really getting better. I feel calmer with the realization that it is perfectly within our rights as parents to ask to sit down with our doctors and make sure they have all the information they need to really make a good judgement about this issue, and that we have all the information we need to feel that their judgement is, indeed, correct. This has been an exhausting, scary process, and it's not over yet. But the tempest is, at least for now, gone.

Master, the terror is over.

The elements sweetly rest.

Earth's sun in the calm lake is mirrored,

And heaven's within my breast.

Linger, O blessed Redeemer!

Leave me alone no more,

And with joy I shall make the blest harbor,

And rest on the blissful shore.

The winds and the waves shall obey Thy will:

Peace, be still; peace, be still.

Whether the wrath of the storm-toss'd sea

Or demons or men or whatever it be,

No water can swallow the ship where lies

The Master of ocean and earth and skies.

They all shall sweetly obey Thy will:

Peace, be still; peace, be still.

They all shall sweetly obey Thy will:

Peace, peace, be still.

Master, the Tempest is Raging:

written by Mary Ann Baker,

as found in the LDS hymnbook.



The night is darkest just before the dawn

Before I launch in to today's story, let me just say that I'm not writing about all of these things because I want to be a Sally Sob Story. A big part of my reason for writing this blog is to be better at journaling. These last few weeks have been difficult, and I've learned a lot as a result. I'm writing this stuff down partly so that I can remember it and continue to learn from it. Thanks for putting up with me!

So, to start where we left off last time: Noah's wheat allergy test came back negative!!!! His reaction to wheat on the blood test was only slightly elevated--definitely not enough to be causing all those poopy diapers, and not enough to start buying gluten-free bread. Naturally, I was relieved that he doesn't have a wheat allergy, but that still left us with no answers about what was making Noah's body so sick.

The next step that our pediatrician advised us to take was to see a gastroenterologist. I took the first available appointment, and on Thursday morning I got both of us up early and drove in to Salt Lake to see what they would have to say. I met with their nurse practitioner, and we discussed the possibility of Celiac Disease based on certain things that made him a candidate. She ordered a blood test for it, but she thought that a bacteria called Clostridium Difficile (c. diff) was more likely to be responsible, and ordered a test for that as well. All of the antibiotics that Noah took for his ear infections killed all the good bacteria and thereby gave this c. diff. bacteria--normally dormant in most people--an opportunity to grow, eventually growing enough to cause this nasty diarrhea that has been plaguing Noah for over a month now. So we went to their lab, got the tests done, and went home to wait for the results to come on Monday.

As if all of this--the blood tests, the possibility of Celiac disease, bad diaper rashes, and Noah's increasingly poor and picky appetite--weren't wreaking enough emotional havoc in our lives, Noah had a rare complication from the month of constant diarrhea on Sunday morning. I was alone with Noah when it started, and I had no idea what to do about it. I'm not going to go into details here, because it really was an unpleasant business. All I'm going to say is that it was NOT life-threatening (thank goodness), but it was still scary, it put Noah in a lot of pain, and it was all very upsetting. After trying to handle it myself (with the help of my mom and mother-in-law over the phone--thanks, moms!), I called Tyler home from his church meetings and started trying to decide how we were going to make this better. It was evident that we couldn't deal with this problem on our own, but it also happened to be Sunday--a day that our normal pediatricians' offices aren't open. And, from our internet research about this particular issue, it appeared to be rare enough that your average pediatric Instacare wouldn't know how to handle it. We decided to give the Kid's Instacare a try anyway, and drove 40 minutes in order to get to a location that opened an hour sooner than our local one. Although the nice nurses and doctors at the Instacare recognized that this problem was not life-threatening, they didn't know how to handle it and told us that we either needed to take him to the ER at Primary Children's, or wait until our normal doctor's offices opened on Monday.

We didn't want Noah to have to suffer any longer, so we decided to go to the ER. Not only did they show us how to handle the problem and gave us pain meds to make it easier on Noah, they also had the results of the c. diff test, and told us that it was positive. The gastroenterologist on call--who also happened to be from the same office as the gastro nurse practitioner we saw last week--gave us the prescription we needed to start treating the c. diff, and since the hospital's pharmacy was open on Sunday, we were able to fill it right away and start giving it to him.

Even though it took a trip to the ER to get it, I felt very relieved that we finally know what's been causing Noah's illness a day early, and that we could get the medicine to treat it right away. A phone call to the gastroenterologist's office this morning confirmed that he does not have Celiac disease, and that it's just this nasty, stubborn bacteria that's making him sick.

Unfortunately, things still aren't simple and easy. This c. diff bacteria is very hard to get rid of, so Noah's road to perfect health may be long, and we might need to try several medications before we get there. The medicine that Noah is currently taking makes him nauseous, and while I'm hoping that his body will adjust to it and that the vomiting won't reach a severe level, we might need an anti-nausea medication to counter it.

Despite the many, many roadblocks we've encountered in this process, I'm so glad that we finally have answers. We know why this illness started, we know how to treat it and how to prevent it in the future, we know that he is not allergic to wheat and that he does not have Celiac Disease. Most of all, we know that he will soon be back to his normal, healthy self very soon.

Especially over this last weekend, I've been reflecting on the steep, steep learning-curve the first year of my motherhood has given me. I've become acquainted with the worlds of ear-infections and food allergies. I've learned creative ways to help pack some pounds on an underweight child who is allergic to dairy. I've learned the importance of taking a good probiotic after taking antibiotics for a long time (VERY important, folks!). I've learned that I can deal with things I never thought I could handle--things I never wanted to handle.

More importantly, I've learned how to enjoy my son. I've found a wealth of joy in the way he wrinkles his nose and sets his lips, the way he cuddles with stuffed animals and romps right before bedtime, the way he loves to look at books and carry my purses around. My child's vitality and curiosity and smiles enrich my life and causes me to say that I am truly blessed. I thank the Lord every day for a life so full of joy and love.

I wish I could say things were better

I posted a few weeks ago about how Noah has been having digestion issues. Without going into too much detail, let's just say that I've been changing an average of 6-10 poopy diapers A DAY. After a lot of troubleshooting, a round of expensive medication, two bottles of diaper rash cream, and multiple conversations with our pediatrician, dietician, allergist, and my mother-in-law (a NP), nothing has changed. It's been over a full month since this started, and we are getting desperate for an answer.

Fortunately for Noah, a bad diaper rash marks the extent of his suffering--to all outside appearances, he's a perfectly healthy, normal little boy. This is the one good spot I can be thankful for during this whole experience--that he hasn't felt or appeared to be sick. His oblivious cheerfulness makes everything easier to handle.

After trying all of the normal solutions, it's time to move into deeper testing. Today, we're going in to have his blood tested for wheat and corn allergies. We tested a few months ago for dairy, eggs, and peanuts, but we didn't test for wheat and corn since I had not yet seen any signs of a problem with these foods. Noah's been eating things like bread and graham crackers since he was 6 months old, and this is the first time I've ever suspected that there might be a problem with it. Now that this issue has gone on so long, though, I can't think of anything else it could be.

The thought that Noah is probably allergic to wheat has been extremely hard for me to handle. Is it silly to be so worried about this? I mean, it's just food, right? It's not like death or war or a hurricane or cancer. And there are so many resources for people with allergies today. Being allergic to major food staples like dairy, eggs, and wheat doesn't mean the same thing that it did for people 20 years ago. Alternative foods and ingredients are very accessible today, and I'm grateful for that.

Nevertheless, it's been really hard for me to put a positive spin on this. How is Noah going to feel, as he gets older, when he sees other people enjoying birthday cake and sandwiches and pasta and McDonald's Happy Meals and pizza and ice cream? How hard will it be to teach him not to eat these foods when he's out on his own? How can I teach him that things like this don't matter, when it matters so ridiculously much to me?

I've only been able to come up with three answers so far: First, I need to find a way to let go of it all. I LOVE cookies, and whole wheat bread, and french toast, and breadsticks, and pizza, and spaghetti. But in order for me to emotionally handle the fact that Noah can't have these things in conventional forms, I need to change my attitude about them. Spaghetti can be just as yummy with rice noodles. Wheat-free, egg-free, dairy-free cookies and brownies can be just as delectable and enjoyable. And skipping out on the cake and ice cream at family birthday parties doesn't have to take all the fun out of it. In order to raise a child who is not emotionally upset by all the things he can't have, I need to find a way to erase my own emotional attachments.

Second, I need to stop thinking about all the things Noah can't have and focus on the things he can have. Ice cream made with coconut milk, for example. Corn chips and guacamole. Otter Pops. Potato chips. Popcorn. Maybe whenever I'm tempted to list all the can'ts, I should habitually list all of the cans instead.

Third, I need to remember that the important thing here is that Noah is healthy and happy. As long as he doesn't eat these few foods, he will be perfectly healthy. And as long as he is surrounded by loving family, friends, and given lots of opportunties to expore and learn and play, he will be perfectly happy.

Well, that's all I have time for right now. There's another poopy diaper to change. And then it's off to the hospital to get this blood test done. And even though I've started to be ok with another allergy, I'm still praying and hoping and crossing my fingers that everything turns out negative!

Crazy Preggo Dreams

For the first time in my life, I think I've been having what some people might call a "recurring dream." It doesn't happen every night, and the details aren't always the same, but the pattern and the message is. I've had the dream about five times now, spread out over the course of my pregnancy. It's rather bizarre!

Since half of the reason why I'm writing this blog is for journaling purposes, I wanted to write about this dream mostly for my own sake--so I hope I don't wierd anyone out too much!

The dream usually starts out with me going into active labor. I go to the hospital--which always looks different with each new dream--and things get going. Strangely, I never remember the actual birth. My dream always skips that part, and the next thing I know, it's the next day, and I have no clue how the actual birth went. However, my body always feels fantastic, even though I've just given birth, and I start to do crazy things--like leave the hospital to run races with my sister-in-law or go to work. One time I gave birth the day before Thanksgiving (that's the week I'm actually due) and decided it would be a good idea to go to RC Willey and buy a TV the next day. I stood in the customer service line for an hour and a half, and I felt so proud of the fact that you would never know that I had just pushed a human being out of my body.

This time, I delivered my baby via C-section, at 20 weeks along (which is about where I'm at right now). In real life, I am terrified of having a c-section! I mean, I know I would survive if I ever had to have one, but I am still quite scared of the whole thing. But in my dream, I was perfectly calm and happy with it. I knew exactly why we needed the surgery, and I agreed that it was necessary. I remember up to the point where they were making the incision, and then--nothing. The next thing I remember is seeing our baby girl, dressed in adorable pink clothes and looking like she was perfectly healthy and fat, even though she was 20 weeks premature.

Again, even though I had just had a major surgery, I felt fabulous! I went back to work at my old job the next day, and I did a great job teaching and interacting with the kids. No one even asked where my baby belly went. I could feel the healing wound, but it didn't hurt at all.

By the end of the day, the memory of yesterday's events finally impact me. I just gave birth. I have a brand new baby at home, which I haven't seen all day. My body just went through a major surgery. Why am I working? I don't belong here, doing busy-people things. I belong at home, resting and bonding with my newborn. Just because my body feels energetic and carefree doesn't mean that I don't need to be doing new-mommy things. I need to go home to my baby.

These dreams always end that way--with the realization that, even though my body feels perfect and full of energy, I still need to be home, resting and taking care of the new child in my life.

I wonder what my subconscious is telling me here. Do I just want a positive birth and after-birth experience so badly that I'm creating this scenario over and over again when I sleep? Or is there a deeper meaning somewhere?

And mama bear says, "GRRRR!"

For those of you who don't want to listen to me grumble and complain for the next 500 words or so, here's a nice little summary of what I'm saying today: grrrrrrrrrr.

Let's start with the more trivial matters of my disgruntledness. I know I should be extremely grateful for the rain that is drizzling outside my window--heaven knows our poor fire-stricken state needs it! But remember my newly remade goals to go walking and do yoga and all that healthy exercise-stuff? Well, I had planned to go on a walk this morning. Of course I can most likely go on a walk later today, but I was really looking forward to starting my day with that burst of energy that only a fresh, sunny morning and a brisk, long walk can give you. Oh well. Better luck tomorrow, yes?

Next: I've been waiting for a dietician to call me for over a week now. Each day that passes, I feel more and more anxious about getting an appointment for Noah with them as soon as possible. With his egg, milk, and peanut allergies, it has been very challenging for me to find ways to give him enough protein and fat to help his little body grow. As a result, he has not gained any weight for the last 6 months. Calcium intake is also a problem, especially since Noah is now fully weaned. So at his 12 month appointment, our nurse practitioner said she would get in touch with this dietician, who would then contact me with information about setting up an appointment.

That was on Tuesday last week. Since that time, Noah has started having a lot of--ahem--bowel problems that are very worrisome. I'm positive they are connected to his diet--he shows no signs of sickness other than this one problem--so I've been doing my best to change it accordingly while waiting for help from this dietician. I've been giving him lots of applesauce, bananas, and bread for most of the last few days (I haven't stuck 100% to this diet, I admit. Like yesterday we went to a fun July 4th BBQ, and I admit to feeding him watermelon and grapes. And some steak.)

This morning, when it became evident that these efforts were not enough, I realized that I needed to look at the other sources of fiber he's been getting. Like the refried beans he had as part of his dinner a few days ago. And my homemade wheat bread. And, heck, don't apples and bananas have fiber in them, too?

So in a last-ditch effort to try and stop this diarrhea on my own, I'm making white bread this morning. I can't think of anything else I can change that will decrease his fiber intake without completely depriving him of the other nutrients he needs.

More fat, not less? Without any dairy and eggs? Less fiber, not more? White bread, not wheat? This is so confusing and backwards to everything I know about nutrition, and it just seems to get worse. I tried calling our NP to see if she could give the dietician another call to remind them that I'm still waiting for them to call me (I would call them on my own, but our NP seemed to want to do it this way), but she won't be in the office until Monday. So here I am, stuck in limbo, painted in a corner with a son whose poor body needs better nutrition than I currently know how to give him. Again I say: grrrrrrr!

Of course I haven't given up on solving this thing on my own. I'll keep trying to find the information I need until this dietician remembers that my son's not getting any fatter over here. It would be impossible for me to just sit on my hands and wait helplessly.

Sorry for the sob story. I mostly wrote about this stuff just to see if it made me feel better--which it has. I feel much less grouchy now that I've put it in writing. So don't worry too much about me. Things will be ok, and the rest of this day will be better than the first half of it has been. :)

Ashes, ashes, we all fall down!

This morning Noah invented a funny game while I was reading. He got a soft fleece blanket out and--for reasons unknown to me--tossed it over his shoulder and decided it would be fun to drag it around. He's still quite wobbly when he walks, and having to adjust his balance to accomodate the trailing blanket didn't make it much easier for him. So about every ten seconds or so he would fall down in a little heap on the floor, and he'd immediately try to get back up. He usually had to try two or three times before he successfully got on his feet again, and then he'd be off with his blanket, walking as fast as he could, trying to see how far he could make it before stumbling.

The way he was dragging this blanket around was so precious and very funny. As I watched this little play of his, I wondered if he might get frustrated from falling down so often. But his delight only seemed to increase with the frequency of his falls. At first it was only a few smiles, but soon he started giggling each time it happened. This made me laugh, too--which made him laugh even more.

There's nothing quite so entertaining as watching this kid learn how to play on his own. Of course, the times we play together are fun as well--but it has been quite the experience for me to watch him explore his world and initiate little games like this entirely on his own.

Happy Monday

It's a new week, with new goals, projects, and one of my favorite holidays to look forward to!

I went to the craft store on Saturday to get some inspiration for the things I'm going to make for Baby Girl over the next few months. To my delight, I found some lovely fabric that will be perfect for a play mat! I bought the first piece with a coupon, and I'm waiting for more 40-50% off coupons to come in the mail before I buy the other pieces. I'm excited to start working on it!

I am determined to get back on my exercise goals again! Going on 30-45 minute walks at least 3 times and doing yoga 3 times a week are my main goals. I also want to try some of these exercises that I found on Pinterest that are supposed to help your body support and heal the seperated abdominal muscles during and after pregnancy.

As I write this, here is what I'm hearing in the back of my head: "Do the baby vorkout! Make those babies gleeful! Hallo! Who are you? Get avay! I don't like vat you say!" One of the best movie moments ever. Anybody recognize this? :D

Well, I think that's all I have to say for today. Time to get Noah up from his nap...