Tuesday, January 25, 2011

I just need to vent.

Hey friends. Ever since last week's cardio appointment, and all the sickness that surrounded it, I've been in a bit of a funk. Maybe it's the fact that Ethan now has an ear infection, on top of all of his other ailments, and is back on as-needed breathing treatments, plus an antibiotic. Or, it could be that my own eye is starting to feel a little strange, and I've gone through more tissues than should be allotted to one person in two days.

Back in September, when Ethan's cardiologist told us to "let him live" during the cold and flu season, I was so excited about a winter out of confinement! However, now that we've been a little more loose with where we go and who he's around, he has managed to pick up a little bit of everything from everywhere!

(Disclaimer, just so y'all don't think we're completely inept: we haven't knowingly taken him around anyone who has been remotely close to being sick. Yet, those hidden germs still find their way into baby boy's system.)

So, now staying home is just naturally forced on us. And it sucks. Last night, my sister and I went to the grocery store and I'm not sure who ran out of the door the fastest: me, or her. She was home all day yesterday dealing with the insurance company after getting into a wreck this past weekend. The fact that we jumped at the chance to do some late-night shopping at Aldi (in our sweats, nonetheless) gives you an idea of how desperate we were for some fresh air.


Now, due to Ethan's general feeling of sickness, he's not eating. And, because he's not eating? Yup, you guessed it. He has lost weight.

Didn't I just say I was done obsessing about this??

I'm trying, y'all, but it makes me crazy when my boy won't eat. I don't like the person I become when he refuses two out of three meals a day. I know how vital every bite is to his nutrition, growth, and development; however, I also know that when I don't feel well, I don't want to ram a bunch of food down my throat, either. So, I struggle.

It especially drives me batty when he refuses breakfast but then devours an entire banana, with a side of pretzels and hummus an hour later. I'm starting to wonder if there's a power struggle going on? I'm positive I force food on him more than the average parent, which I believe is a direct result of medical professionals stressing me out about his weight. So, because he's almost two, and I've been told that's what two year olds do, he turns all defiant on me, which makes me push harder, which ticks him off, and then the only place the food ends up is on the floor.


I am so incredibly thankful that Ethan has overcome most of his texture/sensory/non-eating behaviors. I'm thankful that, on a good day, he consumes more calories than some adults I know. I KNOW he's able; I just don't know what to do when it turns into a "no!" fest. I would love to read any ideas or thoughts y'all have on this; I know lots of you out there have dealt with very similar situations!

If I'm honest, I think the news from last week's cardio check-up is factoring into my stress about his non-eating. I know that if a third heart surgery is looming in our near future, those doctors are going to want him as chunky as he can be, and his body will need that for healing, too.

I do trust God to take care of Ethan in ways that I can't. But, just as I know my parents only wanted the best for me, too, and acted as a result of that, I still feel the need to shake my fist in the air and say, "Daddy, what in the heck are you doing?!"

Thursday, January 20, 2011

Breathe in, breathe out.

I'm tired. Ethan has been sick since he woke up yesterday morning ... high fever, lots of snot, and just in an overall really bad mood. I took him to see the pediatrician yesterday after his fever continued to creep up, even after alternating Tylenol and Motrin. She was able to rule out strep and the flu, but he does have pink eye.

Pink eye?? How in the heck did that happen?!

The snot and fever, though? Just a virus. I have mixed feelings about these stupid viruses. On one hand, I'm glad there's no infection but, on the other hand, I really want to give him something that will take it all away. At this point, he is absolutely dependent on a pain reliever/fever reducer every 3 hours to keep him happy.

Enough of my whining, though. I'm sure y'all are really reading to see how today's appointment went.

I will start off by saying what I've been trying to tell myself since we left the office this afternoon: overall, it was a good appointment. Overall, it was a good appointment. Overall, it was a good appointment.

Thank you for your thoughts and prayers. Despite being sick, Ethan did surprisingly well with the various tests. Although, they should probably just forget about getting a blood pressure reading until he's at least seven; he HATES that cuff! With a little Elmo, and some reassurance that nothing they did today would hurt, he laid perfectly still as Dr. I interrogated his pacemaker, Mrs. Cathy ran an EKG, and Mrs. Lindsey took pictures of his heart. He really was a model patient!

A note about his weight: yesterday he weighed 25 pounds and 5 ounces, wearing just a (mostly dry) diaper. Today, he was 24 pounds, 11 ounces (completely naked). So, you know what? I'm done obsessing about it. He's gaining slowly and that's all that matters. When his cardiologist can look me in the eye and say, "I'm not worried, are you?" I think Somebody's telling me it's time to let go.

So, onto the results from today. As I typed out my last post with the specific prayer requests for today's appointment, I had the fleeting thought, "What if God chooses to not answer any of these? Will I still believe that He is mighty to save and is rejoicing over my son?" The short answer is yes. I don't have the energy or brain-power to go into the long answer right now.

The good news? Ethan's pacemaker is doing its job beautifully. The settings are optimal and it still has about 2.5 years of battery life left. The not-so-good news? In Dr. I's words, "the pacemaker will outlive the conduit." (Read: Ethan will need another heart surgery sometime between now and 2.5 years from now.)

Breathe in. Breathe out. Repeat.

The pressure where the conduit meets the pulmonary artery has climbed to 75-80 mmHG. That's a difference of 20 mmHG in a little over four months. We were all taken aback by these results, Dr. I included. Unfortunately, the spot where this narrowing (what's causing the high pressure) is taking place can really only be fixed by replacing the entire conduit. The folks in the cath lab have been unsuccessful in the past at ballooning or stenting open that spot; it's just in a really tricky position.

So, instead of all looking well and us coming back in six months, we've been demoted. Dr. I wants to see Ethan back in half that time. He'll take another look at this heart, via echo, in April and we'll go from there. He did say that when the number enters into the 90's, it will be "go-time", so to speak. At the rate the pressure rose between September and today, we very well may be going back into the OR this spring/early summer.

Just keep breathing.

It is our reality that Ethan will face heart surgeries for the rest of his life. However, knowing that doesn't make it any easier to accept. It's like when someone passes away and you ask, "was it expected?" Does it matter?! We completely expected Ethan to need another heart surgery before his 4th birthday; does that make laying him on an operating table a year or two shy of that mark OK? No!

Already, I'm trying to think of all the reasons why it would be "OK" for Ethan to have surgery sooner, rather than later. Already, I'm trying to take over some sort of control of the situation. I have already confessed these messed up thoughts I'm having, though, and I am still trusting God to be what He says He is.

I really don't think He thinks this is OK, either.

Tuesday, January 18, 2011

Upcoming Cardiology Visit

Hey y'all! A couple of posts ago, I mentioned that Ethan would be going to see the cardiologist this week. His appointment is on Thursday and, as usual, I'm feeling the "pre-game jitters". I have a few specific things that I would like to ask y'all to pray for:

-Cooperation. Ethan is turning into quite the opinionated little boy these days. If it's not his idea to have his diaper changed, or to close the pantry door, a full-on temper tantrum emerges. I'm talking throwing himself on the ground and flailing around like a fish out of water! Because of that, I have horrible, horrible images in my mind of him on that echo table. He's not the least bit afraid of the exam rooms or staff, but he does.not.want to be held down. Period. The echo is probably the most important part of Thursday's visit. His heart has not been looked at in over four months, so his cooperation is greatly needed in order to get some vital information!

-Echo results. Assuming Dr. I can get a good look at Ethan's heart, I would like for you to pray specifically for the pressure in his heart where the conduit meets the pulmonary artery. This is the number that will, most likely, determine Ethan's next heart surgery. Back in September, the pressure was measuring 55-60 mmHG. Pray that this number has not gone above 60. Also, pray that his ventricles still show a nice, strong squeeze!

-Weight Gain. At last check, Ethan's weight was headed in the right direction! On January 3rd, Ethan weighed in at 11.25 kg (24 pounds, 12 ounces); this was up from 24 pounds on December 6th. When Ethan is weighed on Thursday, pray that he will weigh between 11.4 and 11.6 kg (25-25.5 pounds).

Got it? Cooperation during the tests, conduit pressure less than 60 mmHG, excellent heart function, and a weight of at least 25 pounds. Is that too much to ask? I certainly don't think so...

"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

And, just because it has been a while since I've been able to put pictures with my posts, here you go!

Friday, January 14, 2011


A Week in the Life of Ethan

Written by: Granny, as Ethan

I am a total non-stop ball of energy. There is no cabinet I have not opened, even now the upper pantry doors. No appliance I haven't kissed or opened ... no knobs I haven't turned. I even found out I could remove the drain plug from the chest freezer. I can even open that now, too.

There is no chair I can't pull away from the table, and I can even climb on top of said table. One night, I got the honey pot and had a ball before Ninny (Granny) found me. Boy, do I love honey! I have turned Poppy and Ninny's bed into my very own trampoline and Poppy's back makes a very good diving board. I can climb on any couch, chair, and coffee table. And, I can jump, roll, or fall off all of the above. I even can get in the tub with my clothes on!

I had my first taste of snow cream and found out I love popcorn (and I didn't choke eating it)! I hope I gained a few ounces as my Ninny sure fed me good. I got to see my Aunt Bubbie because she came home on Sunday night! She even gave me a haircut.

I am so glad the snow came and got me stranded at Poppy and Ninny's, but I sure do miss my Mommy and Daddy! I have had a very busy week at Ninny's and now I will think of all the things I can get into next time.

And, we won't even talk about the sewing room ... yet!

Wednesday, January 12, 2011

Paying it Forward

Amidst all the painting this past weekend, Jeramie and I took a break on Saturday night to head over to Duke University Medical Center.


Side note: A few months ago, I was asked if I would be interested in joining a council made up of other parents whose child had stayed in the PICU (pediatric intensive care unit) or PCICU (pediatric cardiac intensive care unit). Of course, I said yes!

Myself, along with a handful of other parents, and Duke staff members began the Family Advisory Council in October. Our main goal is to move both pediatric intensive care units to a family-centered care approach. Don't get me wrong. Duke is an incredible hospital and I believe the doctors there could hold their own against some of the top-notch doctors across the world. However, the pediatric floor has a long way to go before it could really be considered "family centered". Since our first meeting three months ago, tons have changes have already been made! We are thrilled to have such a strong voice within the hospital that has taken such good care of our babies, and it's wonderful to have support from so many staff members!


So, back to Saturday night. After a successful fundraiser back in November, the council felt it was time to plan our first event. Everyone rallied together and we were able to plan a great dinner for the families currently in the units. Saturday night was the perfect culmination of our efforts!

Jeramie and I spent our time in the cardiac unit with the families there. We had such good conversation with the parents of these sick, sick babies. As much as I wanted to be strong for those families, tears were all that would come at some points. You could see the hurt in their eyes and, at times, I felt as if I was looking in a mirror. In fact, one dad watched me bring load after load of food into the unit and we joked about hoping everyone was hungry. Then he asked, "So, what church are y'all from, anyway?" I stopped, looked him in the eye and said, "No church, sir. We're just parents who have sat where you're sitting and have felt what you're feeling. We just want to help." His eyes welled up with tears and he was able to squeak out a thank-you. I hope I never forget that moment.

Later, two moms came in to get some food. They both willingly shared the stories of their children and it seemed as if they were just waiting for someone who would listen. Then, at one point, one mom looked at the other and said, "Isn't your baby right beside mine?" The other mom confirmed, then they traded names and promised the other they would pray for their child. In that moment I realized that these moms have been sitting by their babies' beds for 2-3 months now and, for whatever reason, have never reached out to the other. All it took was a few slices of pizza and sharing stories. I've thought about these two moms everyday since Saturday. I pray that God continues to bring them together to encourage and support one another along the difficult road they've been asked to walk.


Another side note: In regards moms supporting moms: a few days ago, I got an e-mail from a friend of mine. We met in the PCICU in April of 2009. Ethan had just coded and her son had just been born. God planted us smack dab in front of each other, literally, and her friendship has been irreplaceable. Her words in the e-mail brought me to tears, and I asked her if I could share it. This seems like an appropriate time as ever to do so, and nothing says, "I get it" like reading something like this:
"...I can't help but feel bonded to you guys after watching what all he went through and what we as their parents endured during those long PCICU days. No one else understands what you've been through like someone who went through the same thing you did. You and me, trekking over to the pump room every three hours, just so you could squeeze out whatever ounces of milk you could for your son, thinking that maybe if you gave them some of your lifeforce would help give them the extra strength they needed to get through. Crying and prayers as tears stream down your face, dripping down to the breast that so eagerly wanted to nurse that sweet baby boy. The ache your heart felt, longing to hold him in your arms and cover him with kisses, instead of leaning over the hospital bassinet, trying to avoid knocking a sensor off or pressing down on the breathing tube ... We love you guys and hope to see you again soon! Maybe us mothers could meet up one Saturday afternoon and have coffee and shop with our boys, like other mothers do!"
If you're reading this from the waiting room of an intensive care unit, or from your baby's bedside, look across the room. Chances are, there's another mama feeling just as helpless as you are, who's just aching for someone to share those feelings with. Char -- thank you, my sister from another mister.


After the families had gotten their fill, we invited the nurses and doctors to eat. It was so nice to be able to give back to them, and catch them up on Ethan. Pizza doesn't even come close to being enough to say thank you for everything they do, but I think they enjoyed it nonetheless!

I feel so blessed to be a part of this council. Serving families (whether it be through food, or emotional support) in critical medical situations is what I feel called to do. I look forward to what we'll be able to do in the future; I really feel like God is going to use this group to serve Duke in a mighty way, and to bring me a little closer to His heart in the process.

Tuesday, January 11, 2011

Checking in

It's about 9:30 on Tuesday morning here in North Carolina. I'm sitting on my couch, in the middle of a freshly painted living room, worrying about whether my husband will make it to work safely, and missing my baby boy like crazy.

It has been a wild past few days here, which all started when I took Ethan down to my parents' house on Friday night. I left him there on Saturday to visit for a few days, while I came back to Raleigh to begin a massive painting project with Jeramie.

Y'all, we started painting around noon on Saturday and stopped around 6:00 last night. I hope to never see, or hold, a paintbrush again for a really, really long time.

The plan was for us to paint all weekend, then my mama would bring Ethan back to Raleigh on Monday (only after being surprised by my sister's move home!). Well, the weather had other plans. In between slathering on the four coats of paint it took to cover our kitchen walls, I checked the news stations and weather reports like a mad woman. It was not looking good.

By the time everyone woke up on Monday morning, there were 3 inches of snow on the ground at my parents' house (near Wilmington, NC). After it was all said and done, they got about 5 inches total! And Raleigh? We got sleet. Lots and lots of sleet. As you can imagine, there was no traveling across the state to bring Ethan back home yesterday, and there will be none of that today. In fact, my sister has a meeting here on Thursday, so Ethan will be coming home then.

Thursday?! When I finally see his sweet chubby cheeks that afternoon, it will have been the longest time we've ever been apart and, man, does it feel strange. On one hand, I've really enjoyed the extra time Jeramie and I have had to get the house back in order, have a date night, and sleep in, but... I'm ready to see my son!

A few of you knew that Ethan was supposed to have his 4-month check-up with his cardiologist today. Obviously, that is a no-go now, but I was able to get him in next week. I'll write a more detailed post on that later, but I would love it if y'all would go ahead and start lifting us up in prayer for that one!

As for me, I have an appointment of my own today, and I hope to be able to get some more stuff done around the house. At some point, I'll post pictures of our downstairs transformation. Our iMac has been packed up for about a week now and I'm itching to upload photos!

Y'all stay safe out there and, for those of you who actually got snow, have fun!

Wednesday, January 5, 2011

Five days in...

I wrote 2011 (well, "11") for the first time yesterday and it didn't feel the least bit strange. Usually, when that time comes each year, I find myself habitually writing the old year or at least commenting, "Wow, that felt odd."

But, not yesterday. It felt natural. It felt good. Almost as if I've been subconsciously waiting for 2011, but I'm not even sure why that would be. It's not that 2010 was a bad year, by no means. Aside from the medical drama, we enjoyed a lovely year at home with our son. I was able to quit teaching and begin the one job I never thought I'd do: become a stay at home mama.

The thought of a new year, a fresh start, has not resounded so loudly with me as it has since 2009. Ethan's birth, and journey thereafter, changed all of that for me. I've said it before, and I'll say it again; I have not had to rely on God's promises and His Word as heavily as I have since March 8, 2009. Not just asking him to bring my son out of the operating room alive, but trusting that He'll provide groceries for the week, or gas for our cars. And, y'all, let me tell you ... He will and He does!

I am really excited about 2011! I know that God has been chipping away at the hardened pieces of my heart over the past two years; I feel refined and refreshed. I look forward to claiming His promises over my life and I feel ready to greet whatever new adventures may come our way.

Happy new year, friends! May we all be blessed with a happy and healthy 2011.

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