Saturday, October 29, 2011

Not Okay

Emma is not okay.

Her pain from her reflux seems to have gotten worse, and sleep around here is a pretty rare commodity.

Up until this latest issue, we would have usually fed Emma about 40% of her daily calories overnight through her tube while she slept. And when this issue first started, we were feeding her even more overnight because she was retching and gagging so much during the day it was was hard to get enough in during daytime meals.

Then we started Plan A, which was a small amount of a medicine 4 times a day that was supposed to 'speed up' her digestion. The hope was that her food would get sent 'south' out of her tummy before it could travel 'north' in reflux. Plan A worked in that she started retching less, but ... well, not to be gross, but the plan of getting stuff to go 'south' quicker started working a little too well.

Next up was Plan B, which is an even smaller amount of the medicine 4 times a day. The big 'D' seems to have gone away for the most part; her diapers are back to normal (I know you REALLY wanted to know this ...). But now Emma's retching is slowly starting to come back. And this time, what's really making life miserable is that her nighttime reflux seems to be really really bad.

She wakes up at night moaning and retching and gagging and coughing. If we go to her, she just arches her back and reaches back for her crib; she clearly just wants to sleep. Then she does that 'breath-holding-breathing' that sounds like she's in pain for awhile, and finally she does fall back asleep for a couple hours until she's up again and we do it all again.

When I spoke to her pediatrician last week, she said that Plan C is surgery to redo her Nissen. This is a much more major surgery than just getting her ear tubes replaced, and I really don't want to put her through it. Her doctors (primary and GI) feel that we need to make sure we give Plan B a fair chance to work before we move on to surgery, so the plan was to call them during the second week of November. Drugs need time to really fully take effect, especially when we're talking about tummy drugs ... I know that ... but we want Emma all better NOW!

I don't think Emma's going to get all better now ... or tomorrow ... or the day after that. I think if the drugs are going to work it's going to take time. And even if we do move to Plan C, surgery like that doesn't usually get scheduled over night.

So we're plugging along. We're starting to feed her less than we have been, which is an awful feeling, but if putting food in her tummy while she sleeps causes pain, then we'll put less food in her tummy while she sleeps in an effort to cause less pain. We've been so good about keeping her calories up to where they are supposed to be, it feels irresponsible to feed her less than that, especially since her appetite has nothing to do with what goes in. I hate the thought that she might be hungry, but we can actually get her play with us happily when she's not in distress because her tummy is trying to empty in the right direction. And ... cue the Mommy-guilt.

God is good, all the time. We appreciate prayers. Emma will eventually be ok, just not right now.

This sucks.

Thursday, October 27, 2011

Smiling Pumpkin

As much as I wish Emma didn't have to go to school in the afternoons, I do love me some time with my boy.

Happy Fall!

Tuesday, October 25, 2011

You don't know

We were sitting along a window ledge at the Children's Museum eating lunch. She was sitting alone a few feet down, obviously waiting to meet someone.

She was old enough to be my mother, but was wearing more jewelry and had a much bigger purse than my mom does :)

As Charlie took his first bite of his PB&J, she struck up a conversation with him about how cute his shoes were. I sighed, because I had been hoping I'd be able to get away with feeding my daughter without a stranger commenting on it.

No such luck.

This lady was more bold than most, she opened with

"How long does she have to eat like that? When are you going to be able to start feeding her normally?"

Usually that question is about 5 sentences into the conversation, but I guess we were just diving right in that day.

I told her that Emma has been tube-fed since birth and that it was a matter of getting her muscles strong enough. I stopped there because it was already feeling like there were going to be more questions than answers in this conversation.

The woman told me that she had a friend with a grandson who was tube-fed.

She rolled her eyes toward me and said,

"Except he's almost THREE! Can you believe they're still feeding him that way when he's almost THREE years old?!"

As if it were a choice. She nodded at me as if she had just told me the juiciest gossip about the worst parenting decision she'd ever heard.

I asked why he had gotten the tube. She rolled her eyes and told me she wasn't sure, but it happened in NICU "because you know how those DOCTORS are!"

"and now they've all just gotten so used to the silly thing; it's made him LAZY!"

I opted out of telling her Emma's age and just smiled politely.

Then Emma pulled one of her hearing aides out. I told her, "No, no, Emma. We need to keep those in your ears!" And put them back in.

I was about to engage Charlie in conversation, but the aforementioned woman interrupted as Emma pulled the other aid out.

"Oh, come on, Mom! She doesn't want to wear them! It's too loud in here for her, let her keep them out!"

I didn't respond at that point. I put the aid back in and distracted Emma with a song and she kept them in for awhile.

"Does she talk?" was up next.

I just politely smiled and said that she will someday but that she's got a lot going on. Mercifully, Charlie asked me to open his applesauce for him at this point so I had an excuse to attend to my son.

And I'm not kidding when I tell you that this way this woman exited this conversation was to point to another stranger and say, "Oh my gawd, I NEED to ask her where she got that sweater!"

I didn't blog about this encounter when it happened because a) I had a WAY more important adorable video of Emma to post from that day instead and b) I didn't want to just whine. And actually, to be honest, she didn't hurt my feelings as much as she left me feeling angry and self-righteous. How dare she give me advice, right?

And then I read this post this week about assuming the best in others (on a different topic, but still applicable) and it got me thinking about that encounter.

See, when I left the Children's Museum that day, my inner monologue was going something like this:
You have NO idea what you are talking about! DON'T tell me you know best about how to feed my child! And DON'T pretend to understand how important it is that Emma learn to wear her hearing aids in a noisy place! I'm guessing you have NO CLUE what it's like to raise a child who you know might NOT TALK!

etc etc

It reminds me of a conversation I had one time with a friend of mine. She was going through a Master's program to become a Speech and Language Pathologist when I was pregnant with Emma. She told me that an important part of an introductory class she took was a concept of "Unconditional Positive Regard."

Unconditional Positive Regard is the idea that you, as the therapist, must assume the best of the families you work with. They may be totally disheveled and late and have forgotten a crucial piece of equipment, but the professor emphasized that the therapists must unconditionally hold the family in high esteem.

Haven't I heard that somewhere else before?

Like, from a source that should, perhaps, hold even more authority in my life than a professor I've never met?

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

(I Corinthians 13)

'Love one another'

But wait .... does that apply to ME, also? :) Like, I need to hold HER in positive regard as a fellow child of God?



The moral of the story?

I have NO IDEA where that woman was coming from, either. I have no clue what brought her to that conversation that day.

And, for that matter, I have NO CLUE what is going on in the lives of most people I see in public on a day-to-day basis. When I silently judge the stranger in Target whose three-year-old with a pacifier in his mouth stomps his foot and screams for candy because he knows that she'll give it to him if he yells loud enough, I NEED to remember that I have NO IDEA what her life looks like. Is her husband in Afghanistan? Second child in NICU? I don't know. And even if I did, I don't remember God putting me in a position to judge that person anyway. My assumptions are probably wrong, and judgement is not my job

Christ calls me to have a different attitude than what I had toward that woman when I left the Children's Museum.

I forgive her

Christ forgives me :)

Sunday, October 23, 2011

My consolation prize

I've been thinking a lot lately about prayer.

Actually, I've been thinking a lot lately about having the courage to pray a really big, specific prayer, knowing that the answer might be 'no.'

We learn from a young age not to ask for a pony or a motorcycle for our birthday because of how much it stinks to be disappointed when all you got was that lousy sweater.

"Gee, Dad, thanks ..."

I've been clinging lately to a passage in 2 Corinthians 12 about Paul's thorn in his flesh. We don't know what exactly Paul's struggle was, but Paul says that he pleaded with God three times to have the struggle taken away.

But he said to me, "My grace is sufficient for you, for my power is made perfect in your weakness." (v 9)

Paul prayed a faith-filled prayer, PLEADING with God that his thorn be removed. And God said 'NO.'

And what Paul got instead was grace, strength, and God's power at work within him.

But am I the only one who has a little voice in the depth of my heart tempting me to say "Uh, gee, God, thanks ..." when I pray a big prayer and I get those things instead?

I mean, Paul heard all the stories of the people Jesus healed! The blind could see, the lame could walk, a dead girl was brought back to life!

All he's asking for is one less thorn!

[And all I'm asking for is a little less GI reflux in my girl!]

But his faith-filled response is "When I am weak, then I am strong."

So I'm challenged. I'm challenged to once again approach the throne of grace with confidence and present my requests to my heavenly Father. The One who flung the planets into orbit and hung all the stars in the sky bids me come and ask.

And if His answer is 'no' to my request, then I know that what I will get instead is His peace, grace, and strength.

And if I remember that God is good, all the time, and that He loves me and that HE LOVES EMMA more than I can imagine ...

then I can accept that those things are a pretty sweet consolation prize.

Wednesday, October 19, 2011

Good Times

The kids and I went to the Children's Museum this morning and had a really great time!

Emma really got into playing at the water tables. I kind of almost cried, it was so normal :) She stood there playing just like all the other kids her ... umm ... height. And I was so enthralled by her exploration that I'd like to take this opportunity to publicly apologize for being "that mom" who completely ignores her oldest child while he shares nicely at the water boat station while trying to video her youngest child doing clearly amazing things.

I'm sure the novelty of this will wear off very soon, but I'm so excited! After 3 years, I am FINALLY the mother of two young children who are walking in opposite directions in public!!

I'm so proud!!!!!!!!!!!!!!!

And lastly, a riddle: What do good Daddy's do when they have to work late in October in Minnesota but their son still wants to play football in the backyard?

Drag out an extension cord and as many trouble lights as they can find and play in the dark! Pretty sweet, huh?

Sunday, October 16, 2011

Letting out some of the crazy

Life has been a bit crazy around here lately. We've discovered that Emma has some un-resolved reflux issues and we're starting to walk down the road of "Plan A, Plan B, Plan C, and then major surgery" ... it's stressful, and I don't really want to go into all the medical details right now because I'm not sure I understand all the possibilities myself.

But the bottom line right now is that we've been suspecting for awhile that Emma has some "discomfort" that isn't being addressed, and last week we took a trip to radiology that confirmed it.

So ... if you are a parent, you probably remember (or possibly you've blocked out the memories!) those early days when you brought your first child home. Those first few weeks certainly bring moments of joy, but do you remember the terror? The panic? The sleep deprivation that led to insane, illogical worry? I'm quite certain I am not the only new mom who ran, panicked, down to my son's room to see if he was still breathing the first time he slept for more than a 5 hour stretch! And I'll never forget the first time he got a good enough 'bonk' that he did that cry-and-then-run-out-of-air-and-not-inhale-for-long-enough-to-go-pale-and-mommy-panics-until-you-scream-again cry. (Please tell me you know what I'm talking about because that took a long time to type :))

But when you bring home a 'typical' newborn, eventually you realize that everything will probably be okay. You start to understand that a mild fever probably just means he's teething and even if he pukes his guts out, you will probably not even need to call a doctor. For a 'typical' child, you start to understand the power of a Mommy Snuggle and you soon get your sea legs about what does and does not constitute an emergency.

Well, I think for a lot of us parents who have kids with complex medical stuff going on, that initial period of mental instability never really leaves. There are seasons when I feel like Emma's health can turn on a dime ... and I don't mean that she might get the sniffles. So that 'season' of knowing that a full night's sleep is not guaranteed? I'm going on Year 3.

So I'm going to share a glimpse of the piping hot bowl of crazy bubbling just below the surface. It's okay, you can laugh. Letting some of the crazy out makes me feel better ... like a pressure release valve or something.

Emma is showing us in several ways that something is bothering her at night. And now that I know that her reflux is not as addressed as we thought it was, every move she makes at night reminds me that she may or may not be in pain.

So a couple of nights ago, I was having trouble quieting my mind before bed. So I had a beer (gasp!). That combined with the chili I had for lunch led to some indigestion. Nothing major, I wasn't sick, I just woke up at about 2 AM needing a Tums.

So I went into the bathroom to find some antacid and I started to cry.

I couldn't bring myself to take the Tums

Emma couldn't just take a Tums.

So why should I get to just take a Tums and go back to bed while my daughter suffers?

Instead, I felt the correct thing to do was to sit up in bed and literally feel Emma's pain.

Logical, I know.

And then, ladies, remember what happens the day after you've been up Mommy-worrying for no reason? If you're anything like me, you not only didn't get a good night's sleep, you are enraged that your husband had the audacity to sleep through what was clearly a crisis that needed attending to (like running to a child's room to check if he's still breathing when he's obviously fine).

So, while I was toughing it out without a Tums in solidarity for my sleeping Bear, my husband was snoring. Jerk.

I was the epitome of a loving and respectful wife the next day.

And I was a pillar of emotional stability the following day (which, by the way, was my grandmother's funeral ... my poor husband didn't stand a chance).

My husband is a very wise man.

And therefore, yesterday, he enforced a strict nap-time policy. For me. I slept for 5 hours.

I'm feeling much better now and ready to face whatever the week may bring on all fronts.

But if you feel so led, please pray for Emma's health? I was reminded this morning by a very wise pastor that my God is way bigger than my storm, but I'm sure 2 AM will bring all sorts of new SUPER LOGICAL reasons why worrying is CLEARLY the best thing for me to do.

So maybe some prayers for me, too? :)

Peace. Be Still.

Take a Tums and go back to sleep.

Thursday, October 6, 2011

A day in the life of the Bear

My mommy and daddy had to wake me up really early this morning for a swallow study downtown. My mommy told me that she knew I wouldn't like it but that I had to do some eating for some people to take some pictures.

I was mostly good. I knew I had to open my mouth for food for Mommy, but I didn't like the white stuff they put it in, so I had to spit it all back out. The mean therapist even put a syringe in my mouth to get food back far enough so I'd swallow, but I showed them! My tongue is a lot stronger these days (I've been working hard!) and I was able to even get that food out to spit it out.

The therapist said if I was strong enough to do that, I was strong enough to keep myself safe while I ate. I passed!

My teachers at school were so proud of me! They said I get to eat there now, too!

I had a very busy day at school. I have jobs to do. First we sit in a circle and take turns standing up from our chairs and putting our pictures up on the school chart. I picked out my picture from the board with everyone's picture on it all by myself today and moved it to the chart. I didn't need any help at all!

Then I had to make sure the tractor worked. It has a button that I push that says "GO!" when I want it to go. I drove that for awhile.

Then I had a picture to paint. I stood by myself (with my hand supporting me) at an easel and painted with red paint for about 10 minutes. I needed to change clothes after that. I also needed to wash my hands so I held my hands very nicely under the water for my teacher to help me wash them. This is one of those things that my teacher knows how to do but my mommy doesn't. So I wash my hands while I'm at school, Mommy had to wipe them off with wipes at home. Maybe someday Mommy will learn how to do it right!

After that, Ms C the audiologist needed me to play a hearing game with her. I looked in the direction of the toy that made the noise. My teacher told my mommy that I did a really great job finding the right toy. I've gotten so big.

Then we went back to the room for snack time and my speech teacher got to work on feeding with me and then before I knew it, it was time to go home! I didn't really want to leave, I was having such a great time, so even though they kept trying to get me to walk toward the door, I had to keep walking backwards to stay in the room. My PT told my mommy that this was something called a "Developmental Milestone" ... I'm not sure what that means, I just wanted to stay and play!

I walked out to the car with my teacher holding on to the pretty bracelet they give me to hold while I'm at school. I wanted to show my mommy the bracelet, so I walked without anyone holding on to it for 5 or 6 steps before I realized my mistake! See, Mommy can't know I can walk without help. I like holding her hand, so I'm doing my best to never walk while she's around so she'll keep helping me when I'm at home. It's my little secret, so hopefully I didn't blow my cover today by the car. My mommy talked to my teacher for awhile, so I took a couple more steps on the sidewalk with my PT while Mommy wasn't looking. I'll make sure to not do any walking at home tonight and I'm sure Mommy will forget about my mistake. And even if she wants me to walk without her, I can just look at her sweetly and say, "MAMAMAMA" and she'll give in.

She loves me that way.

And she says I'm lucky I'm cute.

But mostly she just loves me :)

Monday, October 3, 2011

The letter C

Charlie's preschool has a "letter bucket." Each week there is a letter of the week and one child is selected each week to bring the bucket home and fill it with things that start with that letter.

This week, the letter is C and Charlie got to bring the bucket home over the weekend to fill with things that start with C.

We filled it with a Car (a toy Corvette, to be specific), a Can, pictures of Cousins, and his Cat in the Hat book.

Then, this morning, he said to me, "Mom, Emma has CdLS! Can I bring her in?"

Um, wow. Okay, buddy!

We asked his teachers, whose eyes filled with tears, if Charlie could tell his friends about Emma's CdLS during his letter bucket presentation. They said yes. Emma was pretty sure she was queen of the world that she got to be in Charlie's class today.

I had asked him on the drive to preschool what he was going to tell his friends about CdLS. He said that it means that she "eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm."

Okay, then.

So I brought Emma for his presentation. She pretty much giggled the whole time.

So here's how it went:

"This is my car and this is a can and this is my cousin Sophie and this is my cousin Ruby and this is Emma, she has CdLS, and that means she eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm and this is my Cat in the Hat book."

No big deal, Mom!

After letter time, several of the kids wanted to play with Emma. One little girl asked about her button, so Charlie pulled up Emma's shirt and showed it to her and explained how it worked and then Emma chased another little girl around who had flashing lights in her shoes and everyone laughed. And then they went and did an art project. Whatever. Totally normal, everyday occurrence, right?

I love how normal this all is to him! These children seriously melt my heart everyday and I am so blessed that God picked me to be their Mommy.

Sunday, October 2, 2011

Knowing ahead of time

Around this time of year, I start to get a wide range of emotions about Emma's birthday. Today I was thinking a lot about the second half of my pregnancy with Emma.

We were lucky. We knew ahead of time that we were not going to be traveling a typical road with this baby. I'm not going to say we were "prepared," because NOTHING could have prepared us for the incredible journey we've been on for the past three years. But I'm really glad to be able to say that we knew SOMETHING was going to be different.

I have several friends right now who are pregnant with not-their-first child and several people have commented to me that they've noticed a change in standard prenatal care between this pregnancy and their others. I've been told that recently most insurance companies and therefore most OB practices have started including more genetic testing in their standard of care. Apparently, pregnant women now have the ability to have a much earlier ultrasound and meet with a genetic counselor early in their pregnancy to discuss that panic-inducing term ... risk.

Now, let me be very clear about this: If the Lord chooses to bless us with a third child, you better believe I'm going to jump at the chance to see that little baby in an ultrasound earlier than at 20 weeks! And, knowing that our minds are already made up and that there would be no "decision to be made" if tests did reveal something abnormal, I think it's great that we have the opportunity to know ahead of time if there are preparations to be made beyond just painting the baby's room.

But something about this trend in prenatal care makes me sad.

In 2008, a study was released from Denmark about the impact of a national pre-natal screening strategy for Down's Syndrome. Further studies have also been released, and what they've found is that after offering screening for Down's Syndrome to every pregnant woman in Denmark, the number of babies born with this syndrome has been cut in half every year. One article predicted that soon very few babies will be born with Down's Syndrome in Denmark.

Pause for a moment. If, in 2008, the number of babies born with Down's Syndrome decreased by 50%, what happened to the other 50%?

They weren't born.

(Don't panic. I don't write political blog posts, remember? Just my perspective and my emotions from my journey)

Now, I get it. Emma, from an insurance company's prespective, is expensive. Her life is, and will continue to be, WAY more expensive than covering pre-natal screening for genetic differences.

And the fact is that insurance companies can be quite certain that the more they can help parents know ahead of time (and early enough to "do something about it") that something is different with their child, the fewer "expensive children" will be born.

And that just makes me very very sad.