Saturday, August 29, 2009

Monday's the Day

Hey er'body. Just a quick post to give you an update about Ethan's cath. We are back on the schedule for Monday morning, 1st case! His cold seems to be A LOT better, so I'm really hoping it will happen this time. Obviously if there's any doubt, I'd rather it be put off but Jeramie and I (along with Ethan's doctors) are very anxious to get this information!

I'll be out of work Monday and Tuesday, and my little cherubs will be in the hands of a friend of mine, who just so happens to be a signing substitute for Wake County. (Thanks, Kathy!!)

Here's to hoping all goes (and goes well). I'll be sure to update again sometime on Monday.

Finding His Voice

Isn't he just the cutest?!

video

Thursday, August 20, 2009

Plan F...

...or something like that.

For those of you who don't receive my Twitter/Facebook updates, I want to let you know that Ethan did NOT have his cath today. We woke up super early, packed our car with about 2 days worth of clothes, and headed to Duke. The whole morning I kind of had a feeling that Ethan's cold would stand in the way of this procedure, and it did.

The anesthesiologist was not comfortable putting him under with so much congestion in his upper airways; and if she wasn't comfortable with it, I sure as heck wasn't! No doubt, the whole team (us included) was frustrated. This whole mess is a bit of a double-edge sword. Ethan needs to have the cath in order to obtain some critical information for his future course of care. However, the risks associated with anesthesia rose significantly due to his cold. So do we cath him anyway, in order to get the info we need, and risk the (very high) possibility of him being in the ICU for a week or so on the vent? Or do we let the cold "run its course", go ahead with the cath when his lungs are in better shape, but potentially lose time in the process? Ethan's cardiologist assured me that we WILL get the info we need, hopefully sooner rather than later.

The NEW plan is to wait out the cold, with the hope that it will be clearing up in the next week or so. The doctor in charge of the cath would like to re-schedule for next Thursday, or potentially the following Monday. Of course, all of this depends on Ethan's health over the next week.

The hardest part is knowing that all of this is out of our control. There's absolutely nothing we can give him to make this cold go away any quicker. We can manage the symptoms, but only time will allow him to become healthy enough for anesthesia. And so the waiting begins...

(Have I mentioned that I'm impatient?!)

Wednesday, August 19, 2009

Change of Plans

So... it looks like Ethan's cath won't be happening on Monday afterall. Instead, we'll be going to Duke TOMORROW morning. The plan is for us to be there at 7:00 and Ethan will be 1st case.

This is all somewhat dependent on this little cold he has. It sounds like things should be OK, but if the cath team finds anything that makes them uncomfortable with putting him under, the procedure will be cancelled.

Please pray that Ethan would be healthy enough for this to happen. The information we'll receive from the cath is critical to our next steps, and everyone agrees that we need this info ASAP (hence, the chaotic scheduling). Pray for the overall success of the cath, and that our hospital stay would be as minimal as possible!

I'll try to send out short updates throughout the day through Twitter/Facebook. Stay tuned...

Monday, August 17, 2009

The News

Hey y'all; I want to take a second to fill you in on some news we received today. You may remember this post about a potential heart catheterization for Ethan. Well, we found out today that the time is now. He will be admitted to Duke sometime Monday for the procedure and will spend at least 1 night there. Depending on how the cath goes, he may need to stay in the ICU for a night.

I found myself asking "why?" A LOT today. Not so much in regards to why this needs to happen; I'm fully aware of those reasons. But why NOW? Why the day before the 1st day of school? Not only did I not finish out the year with my kids, but now it looks like I won't be starting it either. Don't get me wrong, I'd rather be with my son ANY DAY, but I just can't keep myself from thinking about how horrible this timing is.

But who am I to decide when things should happen? Who am I to tell God what's best for me and my family?

I think somewhere deep inside of me, I knew it would be like this. I've had so much anxiety and stress about going back to work. I was, and still am, stressing about being stressed out. Thankfully, I work for an administration that understands my situation and reminds me that Ethan is my mission and focus, and that we'll figure out Tuesday. I know this, but it's very difficult to maintain balance in the midst of two huge events.

Will y'all pray for us? Pray that I would find some peace about the situation; peace about being back in the hospital, about getting my classroom set-up, about missing the 1st day of school. Pray for Ethan, of course, that he would come through the cath with flying colors, and that he won't have to spend any extended amount of time at Duke.

Oh, and we'll be sharing our story (Ethan's story, really) at our church, Visio Dei, this Sunday. If you're around, feel free to come to either the 9:00 or 11:00 service. Y'all can pray for that, too, while you're at it. These wounds are still very fresh, but we feel as though we have an obligation to share our son's story, and to give God the glory through it all.

Thursday, August 13, 2009

Emotions

Ever had one of those weeks that made you wish there were a "do-over" button? That's kinda how I feel about this one. My emotions have been running haywire lately and I'm not exactly sure why.

Actually, that's probably a lie. I can think of a couple reasons...

For starters, Ethan has somehow acquired his first cold. This, paired with these darn teeth, is really making him one unhappy baby. I imagined my last week at home with him would be full of smiles, laughs, and games. Not so much. He is absolutely miserable and it has been tough for both of us. We have gotten in a couple of good cuddle sessions, though. Who knew a snotty baby laying on your chest could create such a sweet moment?

Then there's the whole "going back to work" thing. One minute I'm fine with it, and the next I'm crying all over the place. I think I'm more worried about how I'll balance it all than I am about being away from him. You've got to understand, I had to leave my baby during his most critical moments in life; I know the heartache that comes along with leaving your child in someone else's hands. In a way, I feel like our time at Duke allowed me to "get over" that. And, as far as childcare goes, we have the most ideal situation. Not only will Ethan be at home 2 days a week with Jeramie, but he'll be with Mandy the other 3 days. Aside from me staying home with him, it doesn't get much better than that. I know I'll miss seeing him throughout the day, and I'm sure I'll even cry the first couple of weeks, but I'm more worried about the big picture. I pray I'll still be able to manage our crazy appointment schedule (and hopefully make it to most of them), as well as continue to advocate for him with as much energy as I do now. I pray that Ethan will have a smooth transition, for his and Mandy's sake. I worry about what will happen when he has weeks like this one. Worry, worry, worry...

It also hasn't helped that we recently bought a new computer, and we're in the process of moving over all of our pictures. Looking at pictures of our first days in Duke, as well as seeing pictures of precious babies who are now in Heaven, just sent me over the edge. I couldn't help but think about how unfair all of this, and wish for that do-over button like never before.

Tuesday, August 11, 2009

5 Months (and 3 days) Later

Ethan turned 5 months old this past Saturday. That seems so hard to believe, in a way, but it also feels as though he's already lived a lifetime. Five months ago, today, he was in the OR with his chest wide open, as his incredible medical team (the Ultimate Physician, included) performed a miracle on his tiny little heart. I hope I never lose the sense of amazement that comes along with that.

And speaking of amazing, here are a few of Ethan's current "stats":
-14 pounds, 9 ounces
-24 (and some change) inches long
-eating a little over 4 ounces every 3 hours (except we've been able to drop his 1 a.m. feed -- can I get an AMEN?!)
-on average, takes about 1-1.5 ounces through a bottle each day
-started eating rice cereal with a spoon
-has given us a few giggles, but we're still waiting on that "true laugh"
-has two of his bottom teeth, and it's suspected that more are on the way
-loves it when his daddy sings "Twinkle, Twinkle Little Star"
-can sit up with very little assistance
-rolled from his back to his tummy once (but that darn cast got in the way!)
-looking more and more like his daddy each day:

We love you, Ethan. You are simply amazing. Happy 5 months!

Friday, August 7, 2009

My Girls

This weekend, I'm headed to the beach with these lovely ladies:


It's sure to be full of fun in the sun, catching up on life, and laughing about those crazy college days! This will be my first full weekend away from Ethan, and I'm sure I'll miss him a lot (and Jeramie, too) :) But, I'm really looking forward to getting away and hanging out with my girls.

When I get back, keep your eye out for a big update about today's appointments (genetics and urology), as well as the monthly "birthday" post. Our toothy little man will be 5 months old tomorrow; can you believe it?!

Have a great weekend!

Wednesday, August 5, 2009

A Week in Review

Man, it's been one heck of a week since the last update! Jeramie and I want to thank y'all for the prayers and encouragement you gave us during our first casting experience. I have to say that I am pretty stinkin' excited about the results from round 1! Even Ethan's orthopedist was shocked with the amount of correction that was achieved.

See for yourself:

Before cast #1



After!

As you can see, his forearm (the ulna) is being straightened, thus gaining some length. Ethan is now sportin' a 2nd cast and we plan to have y'all decorate them from this point on, so get your Sharpies ready!

This week has also brought about a few exciting "firsts" for our little man. If you follow me on Twitter, you already know that Ethan now has TEETH! I noticed them on Friday night and he's been pretty mad about it ever since. They've both completely broken through the gums, so I hope the pain will start to subside.

Two down; how many more to go?!


Then, at feeding therapy yesterday, Ethan tried his hand (um, mouth?) at rice cereal!

**I interrupt this update to inform you of the following: I asked my husband, "Jeramie, is that last sentence corny??" With a slight pause he replies, "No ... it's RICEY!!*
*

Wow.

So, like I was saying. Our therapist decided that it's time to introduce solids, and Ethan did GREAT!! It was such a good sight to see food all over his face, and even better to see that he enjoyed it. I think we're all in agreement that Ethan may just skip the bottle altogether and head straight for spoons and sippy cups.

More, please!


On Saturday, we took Ethan on his longest car ride ever to Concord, NC! Our friends Meredith & Jonathan welcomed their son, Charles Yates Ellis, into this world on July 19. We, along with some other friends, went to meet Charlie and Ethan did great for the most part. We won't hold the hour of screaming on the way home against him. Like I said, these teeth are making him pretty darn angry.

Jeramie & Jonathan with the little boys


So, there you have it. Consider yourselves updated. Oh, and you should all go and purchase one of these. Ethan's adorable face will adorn part of a page in this calendar and, better yet, proceeds from this sale will benefit children living with congenital heart defects.

It doesn't get much better than that.
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