Day o' Doctors

This guy...

...is finally asleep.

I'm not sure how much longer Ethan can be on steroids and I can, simultaneously, keep my sanity intact. If that picture doesn't say it all, take a look at the video-graphic proof I've captured over the past few days.

Ethan LOVES Chocolate Pudding! from Joye Mullis on Vimeo.

Untitled from Joye Mullis on Vimeo.

The child is eating like I've never seen him eat before! It's true that he loves the chocolate pudding, but he consistently eats 1/4 cup of yogurt at 2 out of 3 meals each day (along with the pudding). Tonight, at dinner, he ate some feta cheese. Like, lots of it. Then he tried some BBQ potato chips and gulped down some water from a standard open-mouth cup. This sure is a funny way of God answering my prayers, don't ya think? I just hope this new-found love and interest for food doesn't stop when the steroids do!

His behavior is leaving much to be desired, however. One minute he's wide open, tackling a throw pillow at every turn. The next, he's throwing a fit about the smallest thing. Thankfully, he's been sleeping well at night, but naps are hit or miss. Come 7:00 in the evening, he's so tired he can barely hold his eyes open, but continues to fight it. Tonight is a good night. He's in his crib and asleep before 8:15. Can I get an amen?!

Anyway.

The whole point of this post is to ask y'all to say some prayers for us. We've got a loooooong day tomorrow, full of appointments. When I say long, I mean leaving here at 8:30 tomorrow morning and not getting home until 5:00 or so. That's like a workday. Shouldn't we be getting paid for this??

Our day starts with the pediatrician for a follow-up visit from Thursday. I am really, Really, REALLY hoping that we get the go-ahead to stop the breathing treatments and prednisone. I feel like Ethan is sounding better, but we'll see what the professional has to say. Pray that the doctor will notice healing in progress, and will give an order to discontinue these medicines!

After that, we'll go visit our beloved cardiologist. We haven't seen Dr. I (in the office) in 3 months, which is the longest time between appointments yet! I always have a lot of built-up anxiety about Ethan's cardiology appointments. I just never can tell what's going on in that unique heart of his, and I brace myself for the worst. Every time someone (pediatrician, resident, med student, etc.) listens to Ethan's heart and comments, "Well, that sure is one funny sounding murmur!" I tense up a little. Sure, I know that to be true, and it probably always will be. But... does it sound even more funny? Is something going on in there that I can't see from out here? It could make me (even more) crazy if I let it. We'll just have to wait and see what the echo and other tests show. Y'all know the prayer for this one ... restoration and healing of Ethan's heart, and peace for Mama and Daddy.

Lastly, we'll head to Duke to see Ethan's original orthopedic surgeon. He'll assess the situation with Ethan's finger and we'll make a plan for what our next steps will be. Tomorrow's appointment may also involve having another brace made that will double as protection for his finger and maintaining correction of the original surgery. I will say, as horrible as this sounds, that I pinched Ethan's amputated finger yesterday in 2 different places and he cried both times! This means feeling is returning, y'all! Those nerve endings are finding their way and Ethan is on his way to making a full recovery. NOW, can I get an amen?!

We will need lots and lots of patience to make it through that last appointment. I can imagine that Ethan won't nap very much at all tomorrow, which probably means that Jeramie and I will get a little testy with each other come 3:30 or so. That last hour and a half has the potential to be ugly. Pray it ain't so.

As long as I'm still standing tomorrow evening, I'll update y'all on how everything went. For now, I'm going to go savor the quiet and get all the rest I can ... good night!

Before the Morning

About a month ago, I was driving to work listening to the radio. A couple of minutes into this one particular song, I realized I was really connecting with the words. I remember it had been a stressful morning and I was feeling overwhelmed about some things that were happening. I cried a bit, went into work, and the words repeated themselves over and over in my head throughout the day.

Fast forward a couple of weeks and Jonah's sweet mama, Patrice, posted about an experience she had with the same song, "Before the Morning" by Josh Wilson. It spoke to her, so much so, that she redesigned her blog and named it after the song. Up until that point, I never even knew the title of the song, but I then spent some time reading through the lyrics and listening to it again. Hearing it for the second time was just as powerful as the first, especially thinking about it in light of Ethan's & Jonah's situations.

Then, a couple of days later, Patrice posted a video about how "Before the Morning" came to be. It was a short clip about the background story of the the song, and there was a website where you could go to see more.

There, I found a documentary, if you will, on why Josh Wilson wrote the song, and there is an interview with the family who inspired it. It is 10 minutes long, but it is SO worth your time. If you've been affected, in some way, by congenital heart defects you'll definitely want to watch!

My favorite quote from the whole thing: "If we can trust God with our eternity, we've got to trust Him with our now."

Ethan Update

It sounds so cliche, but the phrase "never a dull moment" just fits our family all too well. Those of you who have Facebook (I did away with my Twitter account), already know that Ethan is one sick little boy right now.

I stayed home with him yesterday after he was up a good part of the night on Wednesday/Thursday coughing and just acting all-over uncomfortable. He took a great nap Thursday morning, but sounded awful after he woke up. I managed to work him into our pediatrician's schedule for the afternoon, and I'm glad I did.

Turns out that he heard some wheezing in Ethan's lungs, as well as a crackling sound. He prescribed breathing treatments (albuterol) and a steroid (prednisone) for the wheezing and an antibiotic for the crackling, which could be indicative of an atypical pneumonia. He's on the albuterol and prednisone until we go back on Tuesday, and the antibiotics for the next 10 days. The first breathing treatment in the office was an absolute nightmare. You would have thought we were poking him for an IV. Thankfully, they've gotten much better since then! Whoever thought of disguising the machine as a fire truck is my hero!

Ethan even likes to help hold the mask from time to time. Makes me wonder what's in that stuff that keeps him going back for more!

I'm not convinced that any of this is helping, though. He still sounds "junky" to me, and I guess I was expecting to see more of an improvement. Do any of you have experience with these post-croup coughs? How long do they tend to hang around? Should the meds be providing more immediate relief?

His poor little tummy is also having a fit. On top of the antibiotic he's taking for the pneumonia, he's also on another antibiotic for his finger. Mr. Ethan decided to rip the healing scab off of his amputated finger with his teeth on Tuesday. Because his mouth came in contact with open skin on that finger, the surgeon wanted to play it safe and put him on a 7-day course of antibiotics.

Say it with me, now ... never a dull moment.

All of these medicines are creating quite the comedic relief, though. I have a really funny video of Ethan after a breathing treatment, a dose of both antibiotics, some prednisone, and, of course, some chocolate pudding! Vimeo is taking its sweet, precious time, though, so that will have to wait until later!

I have a feeling this is going to be an interesting weekend, indeed.

Blended Diet

A few weeks ago I started reading up on ways to give Ethan better nutrition through his G-tube. At that point, he was getting Pediasure 5 times a day (including an overnight feed), and something about that just felt so wrong to me. I read many websites, mommy chat boards, articles, and blogs, then Jeramie and I eventually decided that we would start to create a blended diet for Ethan. Two sources, in particular, helped us reach this decision. The first was a story from a gentleman who has a g-tube himself. He talked very honestly about how differently formula/Pediasure feels on his stomach than real food. He challenged the reader (me) to think about drinking a sugary milkshake every day, for every meal and every snack. How would that feel? Probably not so great.

Then, I came across one blog in particular that was just FULL of information on blended diets. This lady is a heart mama, as well, and has seen great progress in her son ever since she stopped the sugary milkshakes and began giving him real food though his tube. Reading her experience was the final deciding factor for us.

When I first started out, I had no idea what I was doing (I still don't, really...). I just started throwing stuff in our Magic Bullet that I thought Ethan would eat, if he were able to. We've definitely been learning as we go, and we've managed to give Ethan more calories per ounce than the Pediasure could even think about giving him. And, they're GOOD calories: flax seed oil, whole milk, tons of fruits and veggies, peanut butter, you get the idea. So far, he has tolerated everything really well!

We've seen his interest in food pick up a little, too. Because we're able to get so many calories in him during the day, we rarely have to do an overnight feed now. This means he actually wakes up hungry, eats some breakfast, gets a blended breakfast on top of that, snacks a little, gets a blended lunch (if we're home), snacks a little more, and then it's dinnertime! Then he goes to bed, without a tube attached to him, and this awesome little cycle repeats itself the following day. I'm stoked!!

Plus, due to the fact that Pediasure isn't making up 100% of Ethan's nutritional intake, I feel a little less guilty about letting him indulge in a chocolate pudding pack here and there. This kid loves him some chocolate pudding!

"Pucker up, Mama!"

I feel really good about what we're doing for Ethan right now. I've often times regretted not being able to breast-feed him, or not keeping up with pumping for as long as I wanted to, and now I feel like I can give a little more of that care back to him. However, I have been convicted recently that Ethan's feeding issue is the one area that I haven't completely given over to God. Because there is so much I can do to control it, I miss out on asking for His help. (I'm starting to see a trend here with this whole "asking God for help" thing.) I want Ethan to eat. I don't want him to be attached to a feeding tube for the rest of his life. I want him to enjoy the pleasures that good food can bring him and to grow up appreciating his Granny's cooking, or the sweet taste of a fresh strawberry. This is one of my many prayers right now. That Ethan would eat. While I will do everything in my power to encourage that down here, I'll also be sure to seek guidance from the One who knows way better than I do!

Stress.

Ethan's asleep in the crib, Jeramie is at the grocery store, and I'm taking a minute to listen to some music and write. I've been in a funk today and a little bit of alone time is just what I need.

I think I'm beginning to get stressed about our house situation. I've been pretty cool, calm, and collected over the past couple of months, but after 12 showings and 1 open house (that NO ONE came to), with no offers, I'm getting a little discouraged. Our realtor has done a great job advertising for us, so now we're thinking our asking price may be a little off. I think our next step will be to reduce the price a little and see what happens. I really, really hope we can sell soon, although that may mean we'll have to put a good chunk of change on the table to do so. I feel like God is making me more than a little uncomfortable to see what I'll do, now that it's getting down to the wire. And, I can tell you, it's not very pretty. I feel more tense lately than I have in a while, and Jeramie would probably agree that I've been just a tad bit grumpy. Why is it so much easier to lose my temper with my husband than to just say "hey, God, I could use some help here."? Us humans are such warped creations. I'm sure that makes God pretty sad, considering we were meant to be absolutely perfect. I am definitely so far from that!

I can also attribute some of my stress to knowing that I will receive my last paycheck, for a good long while, next week. It is official that I will not be returning to teaching next year and, even though I am ECSTATIC about staying home with Ethan, the money worries are beginning to creep in. It seems like we've been hit with so many unplanned, expensive events lately, and it has really affected our ability to put back money like we planned to do. Add, on top of that, the fact that Jeramie is completely out of PTO, and it is enough to give me a headache just thinking about it. I'm really not sure how we can afford to stay in our house with me not working, but staying home with Ethan is a non-negotiable right now. This school year has been unfair to so many people, in so many different ways, and I know that being home with my son is what I need to do right now.

I'd appreciate it if y'all would say some prayers for me. I am an inpatient person by nature and, although that's something I've been working on over the years, those nasty tendencies come rearing their ugly heads from time to time. Pray that I can face this huge life change of becoming a stay-at-home-mama with the excitement that I feel deep down, instead of with fear and worry.

I feel like my family is going to come alive in a whole new way in just a few weeks, and I can't wait to see what's going to happen! I just pray I can be wise and full of grace as we make this transition as a family.

CDSA Evaluation

(Side Note: I'm trying my hand at basic blog design. I've been playing around with Photoshop for a few days and have managed to create my entire blog, by myself! I am justalittle proud, and I'm surprised by how much fun I have doing it. There are still a few things I would like to add but, so far, I'm pleased with how everything has turned out. What do y'all think? Any suggestions/feedback?)

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On Monday afternoon, the Children's Developmental Services Agency came out to our house to perform an extensive assessment on Ethan. They are the group of people who coordinate early intervention services here in North Carolina. We've had a very positive experience with our caseworker, as well as Ethan's therapist, so I had high hopes that this evaluation would go well, too.

I won't bore you with all of the details that the special education teacher in me thrives on, but the gist of the results is that Ethan is a developmentally-appropriate 14 month old boy!! Take a second to think about that....

The same boy who spent the first 2 and 1/2 months of his life laying in a hospital bed, with very little opportunities to reach crucial developmental milestones...

The same boy who's heart eventually just gave up after having to work so hard...

The same boy who has learned to cope with 1 functional hand, while the other has been casted or braced for the better part of his life...

The same boy who has received sedation more times in his first year than you and I probably have in our lives...

THAT boy is considered developmentally on-track, and I really don't think I could be more proud!

He did lose points in a few areas. The first was in his ability to take 2-3 steps at a time. Although, had the evaluation team come out the following day, he would have earned them! Ethan is getting more and more confident on his feet and will take 3-5 steps at once towards me or Jeramie. It is SO exciting, and he realizes that he's doing something good. Once he falls on his bottom, he grins so big and starts to clap his hands. It might be the cutest thing I've ever seen.

Ethan was also "docked" because he isn't able to get on his hands and knees. The evaluators felt this was a very unfair part of the test for him, given his orthopedic defect and his amazing ability to compensate for it, but the test is the test. So, he lost a big chunk of points there.

Lastly, they would like for us to monitor his language development. They feel as though his receptive language (understanding what others say) is right on track, if not above average, but they would like to see his expressive language develop a little more. They are happy with the amount of words he has in his vocabulary, but they would like for him to use more of that "baby Chinese" style of talking. He isn't considered "language delayed" by any means; they just gave us something to keep an eye on.

All-in-all, it was a very encouraging assessment! I am so in awe of how far God has brought Ethan. He has so many things stacked against him, yet he continues to soar. I really hope that, one day, he can stand in awe of his story, too.

Long Overdue

Hey y'all. Yes, we're still here! I apologize for making some of y'all worry about Ethan's results from the geneticist; it has been an absolutely crazy week for the Tri Mulli.

For starters, Ethan spiked a fever of 103 last Thursday night and neither Tylenol or Motrin would bring it down. We took him to the pediatrician on Friday, who sent us to the ER, who ran all sorts of tests to make sure the bone infection wasn't trying to make a comeback, only to be diagnosed 8 hours later with hand, foot, & mouth disease. Yes, our pediatrician should have most definitely caught that while we were there Friday morning and, yes, we are currently looking for a new one (for real this time). If you, or anyone you know, has a great pediatrician in the Raleigh area who has experience with special needs babies, please. Please. PLEASE let me know!

Because of that day of "fun", we never actually made it to our appointment with the geneticist. I called them early Friday morning to explain how sick Ethan was and to ask if just Jeramie or I could come to the appointment without him. To that, the nice lady replied, "Well, honey, I can just give you the results over the phone." Really?! Because we've only been waiting since November of last year!

She proceeded to tell me that the genetic testing showed normal/negative variations in the TBX5 gene, which is located on the 12th chromosome. Mutations in this gene are known to cause Holt-Oram (hand & heart) Syndrome. Due to Ethan's orthopedic and cardiac defects, this is the syndrome that he has been loosely diagnosed with. However, now that we've received normal results, we're kind of back to square one. This is great news, in theory, but it's not 100% accurate. For the research that has been done on Holt-Oram, and the known mutations, we know that Ethan does not possess it. However, since this is such a rare syndrome, there is not tons of research on it, and mutations could exist elsewhere (other than in the T-box area). Basically, in order to find out if Ethan truly does have Holt-Oram, we would need more extensive (read: expensive) testing, some of which doesn't even exist yet.

It is pretty safe to say that neither Jeramie or I carry this mutation for Holt-Oram, because it is autosomal dominant. This means that for us to have passed it down to Ethan, one of us would show characteristics of this syndrome. Since we don't, the chances are pretty low that we would be able to pass this along to a (possible) 2nd baby. Also, the chance of this being a de novo mutation (a genetic mutation that neither parent possessed nor transmitted) is 85%. According to my genius friend, Dana, this is incredibly high in the genetics world, and should be very encouraging to us.

So, it definitely sounds like Jeramie and I have a lot of talking to do. I've mentioned before that we wanted our children spaced about 3 years apart before all of this with Ethan ever happened, so we've got plenty of time to make a decision and still be within our desired "window". We covet your prayers as we dig deeper to learn more about this syndrome, seek advice from friends, family, and medical staff, and begin to make decisions that will have a huge impact on the future of our family.

Oh, and did I mention that Ethan was diagnosed with croup on Tuesday?

Yeah, it's been that kind of week.

Mother's Day 2010

Not only have I been blessed with a Mama who has loved me from the start, who encouraged me to do my best, who never let me give up, who let me make mistakes and learn from them, who has been a source of strength and advice now that I am a Mama ... but in the past 5 years my life has been doubly blessed by the presence of another woman, Jeramie's mom, Amy.

I realize how incredibly lucky I am to have such a strong, positive relationship with my in-laws. The support that both of my moms have given me, especially in the past year, is nothing short of phenomenal. I know that they have a direct impact on how I am as a mother, and at times I'll do something and find myself saying "Oh my word, I am becoming my Mama!"

And, let me tell you, that would not be a bad thing.

If I could be half the mama that mine has been to me, Ethan would never doubt how much he is loved and wanted. The same holds true for Amy. Both of these women love their children (and grandchild) with a passion I can only hope to emulate.

Mama and Amy, thank you for being the wonderful mothers & grandmothers that you are! We are so thankful to call you ours. We love you!

Happy Mother's Day.

Ethan Update

Hey y'all ... just wanted to give you a quick update on Ethan's latest (and future) appointments. He's currently sleeping in his crib, with a fever of 102, so I'm sure this is going to be a not-so-restful night of giving him Tylenol & Motrin around the clock.

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Yesterday, we took Ethan to see the hand surgeon and he was very happy with how everything looked! The cast came off, and a custom-fit plastic brace was made. It is removable, so we were able to give him a bath tonight; his first since April 18. Glory, hallelujah! I'm not sure who felt better afterward... him, or me.

I also clipped his fingernails this evening and it really sunk in that there are now only eight. I am proud, though. I didn't get all sulky or "woe is me". I'm learning to take all this in stride. God has really spoken to me through a variety of people and situations lately, and I know that Ethan is going to be A-OK, whether he has 8 fingernails or 10.

We'll go back to the surgeon next Wednesday and, if all looks well, we'll resume our follow-ups with Ethan's original orthopedic surgeon, Dr. F.

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Today, I took Ethan to see our primary ENT physician. Based on an exam by a pediatrician at Duke last week, I "knew" that both of Ethan's PE tubes had fallen out. Imagine my surprise (and delight) when Dr. H told me that not only are both tubes in place, but they are also completely patent! They re-tested his hearing, as well, and I'm happy to say that it is perfectly normal. We'll follow-up in 6 months to check the tubes, and hopefully there won't be any need to return until then.

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Tomorrow, my friends, is going to be a biggie. Tomorrow is the day that we receive the results of Ethan's genetic testing. Tomorrow is the day on which the future of our family hinges. Will we find out that Ethan's birth defects are genetic, and then eventually have to make a difficult decision about trying for more children? Or will they tell us that this was all some sort of fluke, but the worry and fear of it happening again will still linger? I think I've purposefully pushed away the weight of tomorrow's appointment, but I can't really ignore it much longer.

More than sitting by Ethan's bedside, watching his heart beat through his open chest; more than standing outside of his hospital room, watching a team of people work to bring him back to life; more than either of those things, I think the results we receive tomorrow will challenge my trust and faith in God's ability to take care of my family. Can I trust Him with the decision to have another child, possibly knowing this could happen again? Is my faith strong enough to even attempt to make that decision? Or will the fear of it all ...the worry, the pain... tell me to just stop where I am? To not believe that He can handle this much better than I can?

I'm not ready for the challenges that will be undeniably evident after tomorrow. I pray that Jeramie and I will receive the results with grace and faith, and that we'll be given the wisdom to make the best decisions possible. Now, don't get me wrong; we're not trying for Baby #2 anytime soon, regardless of Ethan's health, but the thought process of even going there has already started. That flame will only be fueled by what we hear tomorrow.

I would love it if y'all would be praying for Jeramie & me. Our appointment is at 11:00 tomorrow morning, and I pray I'll be filled with God's peace when we sit down with the geneticist. Pray I can control my emotions, whatever they may be, in a way that will still allow me to really hear what he has to tell us.

And, while you're at it, you can also pray that this fever of Ethan's will be gone by tomorrow morning. After experiencing what we did last week, a fever is not exactly a comforting sign.

We love you guys; I'll be sure to update tomorrow evening, if my mental and emotional state allows.

Good night!

Jennie & Charlotte

My heart is heavy tonight as I think about two very special families in my life. I hope they don't mind that I share a little bit of their stories here, but I'd like to ask all of you to be keeping them in your thoughts and prayers over the days and weeks to come.

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If you've been reading the blog for a few months, you'll remember my friend Jennie that I mentioned back in November.

(You should really click on those links to read her story; it's breathtaking.)

It is absolutely amazing to think about how far this amazing, strong woman has come. Just 6 months ago, many doctors were not very optimistic about her future, and now she is HOME! I get tears in my eyes just thinking about it. The word "home" has so many emotions attached to it when you've been through something as traumatic as she has.

Jennie is scheduled for surgery on Tuesday to replace the portion of her skull that was removed in the first few days after her accident. She and her family will be meeting with the neurosurgeon tomorrow to go over the specifics of the procedure. Jesse (Jennie's sister, and one of my dear friends) has asked specifically that we pray "that Jennie's bone has survived well in deep freeze and will be able to be used, that the doctors are focused and calm, and that the surgery goes exactly as planned with a quick recovery."

I will be praying fervently throughout the coming days; will you join me?

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Many of you also know that we became very attached to a family we met in the PCICU during Ethan's first days at Duke. Rob & Charlotte became such great friends of ours; they understand our emotions in a way that not many people ever will. We've watched our sons go from tiny little intubated babies, to strong 1-year old boys. That experience has created a bond that will not soon be broken.

Just a week and a half ago, one day after Charlotte & Bobby's birthday (they share the same one!), Charlotte was diagnosed with breast cancer. How is that even fair?? I still find myself getting angry, sad, frustrated about her diagnosis and, yet, she handles it with such grace and stead-fastness in her faith. She amazes me.

Charlotte had a very long day at UNC last week to begin some preliminary testing. She will go back on Tuesday for another biopsy, then again on Wednesday to receive the results. Would you pray that the results will show that the cancer is contained to her breasts? Pray that God would continue to place people in her path to encourage her and keep her strong.

You can follow her story here.

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I can spend so much time and energy trying to figure out why bad things happen to good people, especially those who have already had their fair share of "bad". I can get angry and question God, and wonder if He really knows what He's doing up there.

BUT, I'm learning that's exactly what Satan wants me to do. He wants to find these moments of weakness and frustration and use them to twist my idea of God's goodness and righteousness. He wants me to forget God's promises, to blame Him for all that's wrong in this messed up world.

Instead of all that, I'm choosing to trust His timing, to believe in His might, and to just simply hold on.

Hold on, Jennie & Charlotte, for "the Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing." -Zephaniah 3:17

Hold on.

HOME!

I apologize for not updating sooner but, yes, we are home!!

We were discharged late Thursday afternoon and spent some time visiting with our PCICU friends, as well as our cousin Slade who was at Duke for a clinic visit. I'm pretty sure Ethan doesn't remember the first time he and Slade met and, heck, I'm sure he won't remember this time either; but they sure were cute together!

We were, in fact, home by dinner time and Ethan was so excited! He crawled around every inch of the downstairs, playing with anything he could find in the process. Jeramie and I managed to unpack most of our things, then spent the rest of the evening relaxing on the couch. We all slept beautifully that night!

I went to work Friday while Jeramie stayed home with Ethan. I was pretty sure I would fall asleep eating my lunch, but I managed to make it through the day. Jeramie was oh-so-gracious and took Ethan grocery shopping with him after I got home from work. Needless to say, I used those 2 hours of silence to take the best. nap. ever.

Now, here we are. Nine days post-op and Ethan is doing really well! His cast has slipped a teeny-tiny bit, but I'm hopeful that it will stay put until Wednesday. We'll go see the surgeon then and find out what our next step will be. I've gotten a few good looks at Ethan's hand & arm, and I am really pleased with how everything looks. Please keep praying that the healing will continue and that he will have full sensation back in his hand, sooner than later.

I hope y'all are enjoying the sunshine today! As soon as Ethan wakes up from his massive morning nap, we'll begin our fun-filled weekend! I can't wait to spend some quality family time together outside of Duke's walls!