Tuesday, June 30, 2009

Never a dull moment...

Here I sit in my living room, with a pounding headache and 7 staples in my scalp, typing out a post to fill you guys in on the never ending drama of Plum Frost Dr.

It all started around 2:00 this afternoon. I went to my doctor to have a small, in-office procedure performed. After all was said and done, the doctor warned me that I may feel a little dizzy and to sit tight for at least 2-3 minutes. Not wanting to cause any harm (ahem) I did as I was told. About 30 seconds after he and the nurse left the room, it began to spin. I remember putting my head in my hands and, the next thing I know, 3 people are standing over me calling my name.

"Where am I, and what the heck just happened??" I was so confused. I opened my eyes to see my doctor and two nurses, and pool of blood on the floor beside me. "Where's Ethan?" I thought I had fallen asleep and was worried I wasn't taking care of my baby. Then I hear them talking about trying to get me onto a chair. I wasn't really having any of that and opted to stay on the floor. "Where is the blood coming from? Am I OK?" About that time, I feel them rooting around my scalp. It hurts like hell and I have the worst headache. They inform me that I've cut my head and it's bleeding pretty bad. My doctor tells me I'll need staples and arranges for me to get to the ER at Rex.

(Let me take a second to tell you that Jeramie is at feeding therapy with Ethan at this point. I talked to him while I was still pretty out of it and managed to tell him to meet me at the hospital.)

Fast forward a couple of hours and we're in Room 10 of the Rex ER. The doctor there confirms that I'll need staples, and also tells me I'm suffering from a mild concussion. She orders an x-ray and CT scan just to make sure everything looks OK and gives me 3 super-powered Ibuprofen to help with the pain. The x-ray showed major stiffness in my neck, which is to be expected considering I fell from the exam table (about 2.5 feet high), but the CT scan looked clear. Thank God! She shot me up with Lidocaine (which hurt MORE THAN my epidural during labor, might I add) and proceeded to close up my scalp with 7 staples. I was given a prescription for some painkillers, a few discharge instructions, and sent on my way.


We're at home now, and thanks to Mandy and my wonderful mother-in-law Ethan was, in fact, well taken care of during this whole ordeal. Of course the cut is smack-dab in the natural part of my hair, so it's a little difficult to hide all the staples. That should make for some interesting looks over the next 7-10 days ... but probably not as interesting as carrying a feeding pump around Target.

Like I said, there's never a dull moment.


We have been SO busy this past week! Our amazing friends, Scott & Paige, were in town and we had a blast hanging out and catching up with them. In a way, it felt like they had never left. Spending time with them is so natural and easy, like breathing fresh air! Needless to say, I was sad (really sad) when they had to leave. Anyway, I digress...

Let's talk about Ethan, shall we? He has all sorts of new tricks up his sleeve! He is SO CLOSE to rolling over. He can get the bottom half going, but gets stuck with his arms. He doesn't cry nearly as much when we put him on his tummy now, so I think he's starting to dig that as well. His coos are becoming "conversational" and I get such a kick out of talking with him. I'm waiting for him to bust out a real laugh any day now! He's getting much better with head control, and can sit-up with assistance. (Do any of you IEP familiar teachers feel like I'm writing a PLOP right now?!?!) He's also starting to put weight on his legs when we stand him up. It's so exciting for me to see him reaching these milestones! Our CDSA case manager felt really good about his development so far and we created some goals to work on over the next few weeks.

Oh, and we found an orthopedist! On July 14 we'll head over to Duke and meet with Dr. F who will hopefully have lots of good info for us. Speaking of appointments, Ethan did well at feeding therapy yesterday (which I missed) and we head back to the cardiologist tomorrow. It sounds like Ethan will get an echo at this visit, so I'm a little nervous. I have been praying for a miracle for my sweet baby's heart. Everyone who sees him (including the cardiologist) comments on how great he looks; I really hope that's an indication of some good news...we shall see!

That's all for now. I should probably go lay down; this head injury thing is for the birds! Thanks for all of your prayers for Ethan (and me!). We appreciate it from the top of my broken head to the bottom of his broken heart.

Friday, June 26, 2009

Advice Wanted

Calling all nurses and g-tube moms (and dads!)...or friends that give good advice...

Jeramie and I took Ethan to Duke today to have his current g-tube switched out for the Mic-Key button. If you've seen Ethan's tube, you know how bulky and somewhat inconvenient it is. We were real excited to have it replaced with a low-profile, seemingly more convenient device.

However, as the nurse began going over the care and maintenance of this new tube, we began to have doubts.... "If it ain't broke, don't fix it" kind of thoughts. We currently have no issue with Ethan's g-tube, other than the fact that it's so bulky. We were informed that the new Mic-Key button could leak, or even come out. His current tube BARELY leaks and is stitched in place. At one point, I asked the nurse if she was trying to "vote for" keeping his current tube. (Both she, and the surgeon seemed to think there was no need to switch them out.) Her response was that she just needed to make sure we knew the good with the bad, which I can appreciate. I was just a little frustrated that I hadn't educated myself on the "bad" before driving back to Duke for the 3rd time this week. Anyway...

The pros of Ethan's current tube is, as I mentioned before, it works just fine. Although it is stitched in, it WILL eventually come out and will be replaced with a Mic-Key when it does. This tube is also very easy to vent (the process of "burping" Ethan, or letting air out of his tummy). We have to do this quite often in order to keep him comfortable. The cons are that it is bulky and the tubing stays attached (which Ethan has now found and tries to pull on).

One of the pros of the Mic-Key is how low-profile it is. It sits almost flush with his skin, and has detachable tubing (which I love). The cons are the possibility of it coming out, potentially more leakage, and extra care and maintenance that doesn't happen with Ethan's current tube. We were also told by the nurse and surgeon that this tube doesn't vent as well.

After hearing all this information today we decided to not switch out his tube just yet. We're going to educate ourselves, gather advice (that's your part!), and try to make an informed decision. The plan is to go back in a week or two if we decide that we do, in fact, want to switch it out.

So, we need your input. Nurses, what can you tell us from a medical standpoint? Moms & Dads, what is your advice from a practical perspective? Are there any other pros and cons that we're unaware of? Does it sound like we've gotten accurate information thus far?

We look forward to hearing your responses!

Sunday, June 21, 2009

Friday, June 19, 2009

Matters of the Heart

Today we went back to the cardiologist for a check-up. This was our 3rd visit in 4 weeks and I'm beginning to think they just like to see us over there!

This appointment went better than the other two in that we didn't get any bad news. It was also much shorter than the previous ones, which is always nice! The only test Ethan had today was an EKG to check out his heart rate. Dr. Idriss is still a little concerned about Ethan's seemingly high rate and is trying to figure out why this may be happening. It could be that he just has a naturally high rate, but we don't want to miss any potential problems, either!

It's expected that Ethan's heart function is still pretty crappy. We don't know this for sure since an echo wasn't performed, so we'll get a better idea about that when we go back in 2 weeks. Please, please, please continue to pray for the restoration of his heart. We have a very long road ahead of us still and covet each and every prayer that is being sent up on Ethan's behalf!

Dr. Idriss was very pleased, if not somewhat surprised, that Ethan is growing so well. The thought is that a baby with such poor heart function would be burning calories just by the heart having to work so hard. However, that's not the case with Ethan. His growth charts look AMAZING, even though he is still small for his age (less than 5th percentile for height, weight, and head circumference). BUT, he continues to trend upward and that's exactly what we want to see. He was 11 pounds today, by the way; my ity bity baby is turning into quite the chunky monkey!

So, overall it was a good appointment. By far, the best part of the day was spending time with Casey, one of Ethan's INCREDIBLE nurses from the PCICU. She played such a huge role in our lives during the 9 1/2 weeks we spent at Duke and we couldn't thank her (and the rest of the staff) enough for what they did in helping to save our son's life.

Thank you for your continued prayers, well wishes, encouragement, and support. Thank you for walking along this journey with us, taking the good with the bad, and loving us through it all!

Wednesday, June 17, 2009

Brain Dump

I've had so many things on my mind the past few days, but haven't felt that they warranted individual blog posts. I also didn't think y'all would appreciate me hijacking your Twitter/Facebook home pages with tons of updates so, here we are. Welcome to my thoughts... be afraid, be very afraid.

-As you can see, I redesigned my blog. I was feeling a need for change, and spent a few hours playing around on Photobucket. (You can do some really cool things on there, by the way.) This is the outcome of me not being able to sleep, and getting my creative juices flowing. What do ya think?

-As of last week, Ethan was tipping the scales at 10 pounds 4 ounces; we'll get another weight check this Friday with the dreaded lovely cardiologist!

-I'm wondering if Ethan is trying to get some teeth. He's not been himself the past few days, and he's showing some textbook signs of teething. Oh boy.

-We're thisclose to having his nursery all set-up. By practical standards, we're good to go. There are just a few decorating type things I'd like to do before I'll say we're finished.

-It's amazing how rude strangers can be when there's a crying baby in a store. I witnessed my sister and mama lay the smack down on a lady in AC Moore for bad-mouthing Ethan. NEVER, EVER push the buttons of these two ladies, especially when it comes to their nephew/grandson! Consider yourselves warned.

-Jeramie and I will celebrate our 3-year anniversary in exactly one week, and what better way to celebrate than with our beautiful son and our AMAZING friends, Scott & Paige, who will be visiting after a very long year!

-I'm pretty sure we've experienced Ethan's first laugh, although Jeramie and I have differing opinions on what is considered a "true" laugh. He's looking for more of a "tee hee" while I'm content with noises coming out of the mouth of a smiling baby!

-We're looking into purchasing a new computer, most likely an iMac. I've had our desktop since my freshman year of college (August of 2000), and our laptop technically isn't ours. I'd say it's about time for an upgrade.

-We're still looking for an orthopedist, although we've gotten some pretty good leads.

-We established a "plan of action" with our feeding therapist on how to figure out what's going on with Ethan when he eats. He'll have a series of tests done that will: 1) check his Nissen to make sure it's still intact, 2) assess the way he swallows when eating, and 3) check to see if he has delayed gastric emptying. Hopefully these tests will give us the answers we need!

-My Sister's Keeper is an EXCELLENT book; I would highly recommend it. There is a quote in there that IS deserving of its own post, which will be coming soon.

-I'm pretty sure Annie thinks all of these new baby gadgets are for her. Her latest love: the Bumbo.

-The CVS pharmacy at the corner of Tryon & Walnut has THE BEST customer service! I'd give them my business any day. And, believe me, we've got a lot of business to give!

There you have it. A sneak peek into my mind over the past few days. I'm sure I'm leaving out tons of updates on Ethan, but the biggest will be after our cardio appointment on Friday. Pray for us; I'm already starting to feel anxious!

Wednesday, June 10, 2009

Tuesday, Tuesday

Man...Tuesdays are proving to be pretty unique days. I LOVE them because Jeramie typically works from home, but this is because we also schedule most of our appointments then. Other than the busy-ness of getting to multiple appointments in one day, Tuesdays haven't been that bad.

Until yesterday.

We were scheduled to go to feeding therapy, the cardiologist, and the pediatrician. The first two didn't go quite as well as we hoped, and the third didn't "go" at all.

We've been having some trouble getting Ethan to eat from a bottle at home. He rocked it out with the therapist last week, but has been pretty reserved since then. Yesterday he gave her a taste of what we've been experiencing (crying after every suck, disorganization, not latching on very well...) and she wants us to go for a swallow study. This will show us if Ethan is a "safe swallower". One thought is that some of the milk may be going towards his airway, which scares him and, in turn, makes him cry. This study will let us know exactly what's going on with how he swallows. For whatever reason, Ethan is freaked out by the milk that comes out of the bottle nipple. We just need to find out if this is physical (swallowing issues) or behavioral (texture/sensation issues). Our therapist did say that it is not uncommon for babies to skip bottle feeding altogether and go straight into taking solids by mouth. So we'll see. For now, we're not doing anymore bottle practice at home, just small drips of milk around his Soothie. This definitely isn't the direction we want to be going, but as I've said before, we've learned to go where Ethan tells us...however fast or slow that may be!

As for the cardiology appointment...blah. I REALLY like our cardiologist, don't get me wrong, but those appointments have been the worst for me. They are a harsh reminder of how sick Ethan still is. And I HATE saying that. The Echo showed that Ethan's heart function still hasn't improved. The right ventricle is in pretty bad shape, and I think the doctor (and we) were hoping it would be showing some improvement by now. He considered admitting us back to Duke, but ultimately decided that they wouldn't have done anything more than he did in our 2 1/2 hours there. This is something that will have to be watched very closely, so we'll be going back next Friday (the 19th). There's also a small concern that Ethan's heart rate is a tad-bit high, so he's going to keep an eye on that as well. We're thinking this is just "how Ethan is", but he doesn't want to miss any potential problems. It's so scary to know that we were a small step away from being back in the hospital. I'm having trouble dealing with the reality of Ethan's condition, but also not letting that steal my joy of having him home and seemingly healthy. As I said, blah.

We never even made it to the pediatrician since our cardio appointment went way longer than expected. It was just a quick visit to give Ethan the rotovirus vaccine, and we were able to reschedule it for tomorrow afternoon.

Ethan (and we) are still in desperate need of your prayers! I know my God is bigger than any cardiac arrest and can restore Ethan's heart function. The catch is still knowing He is good even if that doesn't happen. My prayer is that Ethan will recover from such a traumatic event and be able to live a happy, active life. Please pray for the restoration of Ethan's heart and that Jeramie and I would find the strength we need to sit through appointments like yesterday.

We love you guys!

Monday, June 8, 2009

Three Months Later

I spent a little bit of time this morning reading through some posts from the past three months. As I sit in my living room and watch my beautiful son play in his activity gym, cooing and smiling all the while, I can't help but shed a few tears of joy. One of the posts that stood out the most was the one I wrote the day after Ethan coded. We were so lost, scared, and angry. I had NO IDEA what the following hours or days would hold for our precious baby. Now, here we are 6 1/2 weeks later and I'm simply amazed. I am thankful for God's grace that covers me and my family.

Being a mommy to this little boy has got to be the best job in the world! I feel like I could sit and watch him for hours. He's changing so much and I really try to cherish each day and every cute thing he does! While I get sad thinking about him "growing up" and not being this tiny baby anymore, I get just as excited about what each new day will bring. I look forward to watching his personality develop and seeing how he'll adapt to his special body. My prayer is that I'll be a mama who encourages him to figure it out, instead of inhibiting him in some way. I look forward to learning with him and celebrating each milestone along the way.

Here's to our miracle! Happy 3 months, Ethan; I love you so, so much!

Saturday, June 6, 2009

Is there a doctor in the house....

...who knows how to treat an absent radius?!

I know many of you are anxiously awaiting an update from our orthopedic appointment yesterday, but I'm here to tell you it was a no-go. I got a call Wednesday afternoon from Duke telling me that the doctor we were scheduled to see does not treat Ethan's condition. I'm still a little confused at how an orthopedist doesn't handle all things bone related, but I'll get over it.

Evidently there IS a doctor at Duke who DOES work with people similar to Ethan, but he's leaving. Of course. So now the plan is to find a doctor somewhere in the Raleigh/Durham area who has the expertise we need. It sounds like we may have a lead with another Duke doctor, but I'm waiting for a call back to confirm that.

I know there's nothing that could have been done yesterday, but I find myself getting a little impatient. I want to know everything there is to know about Ethan. I want to know what his future will look like, if he'll have two functional hands, how he'll learn to crawl and pull-up. I want to know what our best treatment options are. This is the one aspect of my son that I know nothing about, and it bugs the mess outta me!

I only want the absolute best for my son. Now we just need a doctor who can point us in that direction.

Thursday, June 4, 2009

Sweet Dreams

Look who slept in their crib last night!

I laid Ethan down while mama, Jeramie, and myself did some work in the nursery. He stared at the ceiling fan for the longest time, and when I went in to feed him at 9:00 he was sound asleep!

We decided not to wake him by moving him to the bassinet and he stayed put until about 6:00 this morning! Although, I may be using the term "stayed put" a little loosely. At some point during the night he made a quarter turn, and proceeded to turn again after we set him back the "right" way.

This is definitely a step in the right direction for us. I've been wanting to get him in the crib for the past few days, and it just all came together last night!

Here's to hoping tonight goes just as well!

Monday, June 1, 2009

Updates with Pictures!

I'm beginning to feel as though I'm neglecting my blog, and all of you lovely people who follow it, BUT, wouldn't you agree that I have a good excuse for not updating regularly?

This little fella takes up the majority of my time, and I wouldn't have it any other way! I'm not sure if I'm still in the "honeymoon phase" of this new adventure, or what, but I LOVE being at home with my son. I never saw myself as a "stay at home mom", but the thought becomes more and more appealing everyday. Unfortunately, that's not really "do-able" for Jeramie and I, so I'll be back with my other babies in August.

But, enough of that crazy talk...

Ethan is doing REALLY well! I LOVE being able to say that, and I smile like a giddy little girl when I do. It seems as though he's doing something different every single day!

Jeramie and I have been working with him on head & neck control, since he's a little behind in that area. (I guess we all would be if we had laid in a hospital bed for 9 1/2 weeks!) Anyway, I've noticed a HUGE difference in his ability to hold his own over the past few days. It was so impressive yesterday that we decided to break out the Bumbo!

Isn't he precious?! Man, I love him :)

Ethan went to his first birthday party on Saturday, then we took him on his first overnight trip that evening. Other than some medication leaking out of the bottle and having to call the on-call cardiologist at Duke to prescribe some more, things went really well! He slept great and enjoyed all the attention from PawPaw, Grandma A, and Uncle Nick (who finally got to hold him for the first time EVER).

In medical news, we head back to the pediatrician tomorrow for a weight check. I'm very interested to see how much he's grown. We're pretty much done with his newborn clothes, and I finally stopped squeezing his booty into newborn diapers sometime last week! I think part of me is in denial that he's growing (like he should be), and I don't want to let go of these newborn baby things. Oh well... I'll continue to remind myself that bigger = stronger = healthier!

We also go see the orthopedist on Friday. I'm very anxious to hear what she has to say about his arm and any treatment options. I've said before that this is the one issue that I feel like I know the least about. I'm looking forward to being educated on our options and plan for his future.

Grandma B (my mama) comes into town tomorrow and is staying with us until Thursday. I'm looking forward to having her here, and I know she's about to pee her pants with excitement!

Y'all feel free to follow me on Twitter (@joyemullis) or Facebook for more frequent updates on Ethan! And stay tuned for new pictures; I hope to get those up in the next day or two!

Until then...

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